When people talk about Fibromyalgia symptoms, they usually think pain. However, whilst more people recognise now that Fibromyalgia symptoms include other key symptoms, they are often surprised to learn that there is an extensive Fibromyalgia Symptoms list.
IMPORTANT NOTE:
This list is not to be used for the purpose of self-diagnosis as many of these symptoms may be produced by other serious illnesses. Hence you must seek the advice of a medical doctor to ensure that you receive appropriate medical care.
Core Fibromyalgia Symptoms List:
Fibromyalgia Pain
The fibromyalgia symptom of pain is actually much more varied than many people realise.
Fibromyalgia pain is often described as a deep muscle pain, but the pain can actually be quite different for different people. A primary diagnostic symptom has historically been tenderness and pain upon pressing on a number of tender points located in specific locations around the body. But pain can be all over the body similar to the ache you feel when you have a flu, or it can be more specific like a burning or stabbing pain which can throb and even be described a shooting pain.
So whilst the pain is usually widespread, it can be more localised and feel different than you might think. Many people experience pain even upon the touching of the skin which is called Allodynia, as well as joint pain (especially the temporomandibular joint (TMJ)) and neuropathic pain which cause odd nerve sensations like tingling, pins and needles, crawling or itching sensations and even numbness(called Paraesthesia).
Fibromyalgia Fatigue
Patients experiencing Fibromyalgia often wake up tired, even if they have slept a long time. The fatigue is often severe interfering with most daily activities. It is an exhaustion that goes beyond feeling tired.
Sleep Disturbance
Fibromyalgia symptoms include a number of sleep problems. Besides waking unrefreshed, many people have difficulty getting to sleep and/or wake up in the middle of the night without being able to return to sleep. Research studies have shown that even when people don’t realise their sleep is disturbed, their sleep is disrupted from Stage 4 sleep, reducing the restorative quality of sleep. Another common co-existing sleep condition is sleep apnea.
Cognitive Impairment
One of the most noticeable fibromyalgia symptoms is cognitive dysfunction often described as ‘fibro-fog’ or ‘brain-fog’. This fibromyalgia symptom may include difficulty concentrating, confusion, memory problems, difficulty processing information, word retrieval and disorientation.
Other Fibromyalgia Symptoms:
It is often not recognised that there are many more fibromyalgia symptoms than the ‘core fibromyalgia symptoms’ listed above. Not all people diagnosed have these, but other fibromyalgia symptoms include:
- Neurological Sensitivities such as aversion to touch, strong smells, lights, sounds and even tastes
- Gastrointestinal disturbance including diarrhoea, constipation and other difficulties (sometimes a diagnosis of Irritable Bowel Syndrome is made)
- Low grade fever
- Low body temperature
- Vision problems
- Dry or sore eyes, sometimes described as pain behind or inside the eyes
- Need to urinate, often along with unquenchable thirst
- Muscle twitching described by some people as jolts or flashes
- Chills and cold hands or feet
- Allergies
- Tinnitus
- Significant change in weight
- Decreased libido
- Morning stiffness
- Alcohol intolerance
- Rashes
- Strange smell sensations often described as ammonium
- Profuse sweating
- Multiple Chemical Sensitivities
- Electromagnetic Hypersensitivity
- Painful or swollen lymph nodes
- Hair loss
- Shortness of breath
- Temperature or weather sensitivity (weather changes can lead to symptom exacerbation)
- Canker sores and infections in the mouth
- Vertigo
Psychological Fibromyalgia Symptoms List
People experiencing fibromyalgia often also have psychological fibromyalgia symptoms including:
- mood swings
- anxiety
- depression
- irritability
- emotional “flattening”
Fibromyalgia symptoms from secondary diagnoses (co-existing conditions of fibromyalgia):
Given the large range of Fibromyalgia symptoms, many of these symptoms are actually attributed to ‘other’ illnesses, with patients often thinking of themselves as being ‘particularly unlucky’ to have so many different things wrong with them. Often as symptoms change, a diagnosis of ‘separate’ syndromes of Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS), Multiple Chemical Sensitivities (MCS) or similar syndrome is made. However, these conditions are more and more recognised as being part of the same syndrome and in essence the same illness with merely different symptoms.
But when you realise that Fibromyalgia affects every major system of the body, including the nervous system, endocrine system, digestive system, cardiovascular system and even your cellular functions and metabolism, then it’s easy to see how so many symptoms and ‘different illnesses’ can occur.
Some of these are genuinely separate illnesses, however, they are often experienced by people with Fibromyalgia (FMS) and can often resolve when recovery from FMS is made. Such conditions may also exist before or after the patient has experienced FMS and include but are not limited to:
- Severe premenstrual syndrome (PMS) or exacerbation of symptoms before and during period
- Irritable Bowel Syndrome (IBS)
- Endometriosis
- Tinnitus
- Benign Positional Vertigo (BPV)
- Hypothyroidism
- Adrenal Insufficiency (Adrenal Fatigue)
- Bruxism
- Temporomandibular disorder (TMJ)
- Restless leg syndrome (RLS)
- Interstitial cystitis (IC)
- Small intestinal bacterial overgrowth (SIBO)
- Autoimmune conditions
Fibromyalgia Symptom Severity
It’s important to remember that different patients experience symptoms differently.
Whilst some have milder Fibromyalgia symptoms most of the time, allowing them to care for themselves, do light housework and work part or even full-time, they usually do so at the cost of reducing all other activities including social activities.
Some people experience moderate Fibromyalgia symptoms that restrict their abilities to a greater extent, with reduced mobility and usually not being able to work at all.
At its worst, Fibromyalgia symptoms can be severe and debilitating where people are mostly bed-bound (or couch-bound) and need support caring for themselves.
Many people will waver between these symptom severities over time as they experience flare-ups. However, it is important to realise that the illness is not necessarily progressive. So whilst some people experience a worsening over the years, others find their symptoms reduce as time goes on. Reading and watching videos about patients that are severely ill can be quite distressing and should be avoided. Given the impact that stress can have, such activities can sometimes even lead to worsening of symptoms.
It is also important not to compare your Fibromyalgia symptoms to others. Just because others have more severe symptoms or have been sick for longer, doesn’t diminish your experience or make it less significant. Being chronically ill is difficult and whilst your focus is best placed on recovery and finding some enjoyment in every day regardless of how you are feeling, please realise that compared to a healthy person, your experience of FMS symptoms is of course a difficult experience for you regardless of severity.
The danger of misattribution of Fibromyalgia Symptoms
With so many symptoms and so many co-existing diagnoses, patients often experience ‘diagnosis fatigue’ where they no longer get their symptoms investigated and simply see them as just another Fibromyalgia Syndrome Symptom.
So whilst many people with Fibromyalgia Syndrome (FMS) stop panicking every time they get symptoms that look like some other major and serious disease, it is all too easy to become complacent.
It’s absolutely essential that any worsening of symptoms or new symptoms be reported to your doctor so that these can be appropriately diagnosed and treated where possible.
Want to help?
You can help by
- Making this article better by commenting below with any symptoms of fibromyalgia or co-morbid diagnosis of fibromyalgia that you have experienced that are not listed above.
- Sharing this article or above YouTube video (https://youtu.be/ihEgDT084fM) on other sites where fibromyalgia is discussed, either in the comments section or in the main section by embedding links/videos directly if it is your website.
Fibromyalgia is much more than pain
How about muscle randomly occurring muscle twitching in legs, feet, tongue? Muscle tightness, weakness. Exercise intolerance, tremors. Tremors especially after mild exercise.
Thanks for adding those!
Tremors! Yes, I have fibro and have been diagnosed with essential tremors and take medication for it daily!
Exercise intolerance is definitely another symptom doctors ignore… they just tell you to get more exercise…”just go slow” sighhhh
??♂️
That’s exactly what my MD told me as I was walking out of his office at the completion of our visit. I had asked him to sign a driver disability so I didn’t have to walk a mile in a parking lot to get to the store. He refused and said I don’t do that. You’ll have to walk slow and proceeded to watch me as I left.
Wow
Above all, find a primary care physician who does recognize fibromyalgia as a valid medical problem. Also, learn to say “no” when you can’t commit to something beyond your capacity to perform. Offer to do things you can do without being in bed the next few days. I have been dealing with this for approx 15 years. Pacing myself for a “high energy person” is difficult. I have also learned that some days I actually get to feeling better as I begin to move around some slowly. Share your limitations with a close friend in which you can confide when you are just not able to “meet for lunch, etc”.
don’t be so hard on yourself. Everyone has a limitation, but we must be able to say “no” when appropriate. Your friends will still love you and understand.
Yikes. My fibro treating doctor was the one who filled out mine and sent it in. And I received my car placard in the mail. So I can park close because of my back and leg pain. Ask your family doctor they can do it also.
Best Regards
my doctor did that to me too. Later after i got a walker from a friend who was getting a new one, he told me if I used a walker I could get disability tag. and I did
So true and so very frustrating! I now have a fluctuating weight problem.
O My Gosh I do too! Don’t you hate it? I also crave sweets like crazy too. It’s like I can’t stop once I get started. Do you have that problem?
I lose and gain like a titter totter. Up and down. It effects my blood pressure, breathing, and makes me tired on top of being exhausted from fibromyalgia. My doctor said, to do Keto until I was down to my weight go and then do small portions. Hope you do well.
Hi Jacque, I have been feeling quite ok lately (touching wood as I speak!) I avoid all processed foods and it’s been quite a culinary journey for me :). I cook fodmap friendly foods and avoid gluten if I can. I don’t eat red meat as it makes me sick, and I do gentle yoga every morning (10 min) .I don’t know if this has made a difference or not but am willing to try anything if it means avoiding the crippling fatigue and shoulder pain. Have gained a lot more weight this cycle, nothing seems to affect my healthy appetite!
Hi Bev….Keep up with your Yoga…Proud of you….I also have Fibro…
and as a Yoga Teacher I am limited in my movements…But…..I keep on keeping on….I teach one class per week now compared to eight…It really helps me mindfully…Keep up the good work…Gentle movements…If I can help in any way…please let me know….Stay Bendy with Fibro..(as much as humanly possible)!!!! ?
I’ve been having shoulder pain myself. The tooth grinding has cost me three teeth.I have ocasinal eye problems, I tell people it’s like hen a cartoon characters’ eyes swirl and don’t focus.
For a few months now I have developed the urge talways eat sweets and once I start I don’t want to stop. I hardly eat and I feel like a yoyo with my weight gain. I try to loose weight but is not easy. I exercisd the other day in the bicycle and when I got off, ibsttod up and fell on my knees because my left leg have out. I also was diagnosed with thyroid issues. Gastroparis. And I can not be touched because it hurts like crazy. And my hands are giving out the ability to do normal things is diminishing as the days go by.
Hi Gladys
There are common symptoms and experiences.
Obviously you don’t want to experience excessive weight gain, so staying stable is important.
But I would urge you to prioritise recovery from fibromyalgia over weight loss. The right diet for fibromyalgia is an important component for recovery from the syndrome.
Sir, I can’t wait to get hold of those pages from your book. I need some serious guidance on this evil disease. Thank you n God bless you n yours.
Can craving sweets be attributed to candidiasis, estrogen/serotonin deficiency, and or adrenal fatigue? Even insulin resistance? All of these are possible symptoms of fibromyalgia.We crave the sweets because sugar gives us a short burst of energy.
A symptom I would add to your list is allodynia.
Hi Krysta
Yes, we often get caught in that cycle of eating sugar for a boost – but of course it doesn’t last.
In the recovery stories you regularly hear people talk about changing their diet.
Indeed we can attribute this to a range of secondary dysfunctions and of course it is a cycle of dysfunctions leading to symptoms, symptoms leading to dysfunctions.
DOES MARIJUANA OR CBD HELP
People have varying experiences.
My advice is always to seek recovery from the illness as a whole rather then treating symptoms in isolation.
In other words, to seek recovery, rather then symptom supression.
People have varying experiences.
My advice is always to seek recovery from the illness as a whole rather then treating symptoms in isolation.
In other words, to seek recovery, rather then symptom suppression.
Same with me. Herminia Salinas from Laredo, TX. Diagnosed about 10 years ago. I have frequent flairs, 58 years old and I believe I have had this since I was a child. They called it growing pains, migraines, abdominal issues, sensitive to light nausea and vomiting. But I grew up with my symptoms had 3 daughters and my son who is 18. My symptoms got worse fatigue, exaggerated, pain, everywhere, I was unable to get up let alone sleep, tinnitus, muscles jerking, My oldest daughter 40 years old now has been diagnosed with it an RA. She has realized I had not been faking it. For she was the first one to take me to all kinds of doctors who just would all say we don’t know. Until one doctor did a series of lab work and it included ANA test and came out positive. Turns out that there is something wrong with my thyroid. Now with the pandemic its all tele visits. So just so if you ladies have noticed hair falling of that is another major sign I will come up with a flare. No medication works for for me. From being a body builder up until I was like 45 to a thin little person who is weighing 120 to 130 lbs. I have much more to say but I will cut it here. I pray for all of you who are going through this horrible unseen disease may GOD almighty and my Lord Jesus be with you.
Me too girl! I think I’ve had this a while! Explains all the aches and pins I’ve had and the reasons for not being able to do certain exercises without severe pain!! I always wondered what it was…pains in my neck, severe pain in my waist but in my lower back. Explains it all!
I’m right there with ye, been dealing with same symptoms for YEARS, finally diagnosed, Fibromyalgia, Ra and Lupus, my 43 yr old daughter the same,poor thing poor us! Tis VERY frustrating when people say ” oh I get aches too !” And ye get sooo tired of being in PAIN COSTANTLY !! I’m disabled Rn, but volunteer at medical clinic n do lots of charity quilting to keep moving,going and sane !! I’ve gained 30 more pounds on 8 monthsBUT I cant hardly eat or dont have appetite!! If I try to exercise, I’m down for the count !! But sure is ,in a weird way to know we r not alone in feeling these symptoms n not in our heads !! Is supportive to chat with others thanx a MILLION!! God bless us all
It’s rough isn’t it!
What did you think about the recovery interviews?
I thought I was going nuts . I lost strength in my lower legs out of the blue, major headaches,couldn’t sleep, thought I was going crazy. Finally found a dr. that diagnosed w/ this but I said isn’t this for hypochondriacs?. She filled me in as do these articles that it is real. Thanks!
I gained weight and then my husband as diagnosed diabetic.we went on a low carb diet and have lost 65 pounds this year.I feel so much better. It makes you feel better tonot eat sugar and white flour. Although I do not folow the keto diet I joined everalgroupsofFB.It has been a great suc forlow carb recipes. Good luckand Godbless.
Yes, diet changes can help.
However, the key is understanding WHY this is helpful – the answers are not just due to metabolic health, but also as diet can trigger the root cause of the illness, ANS dysfunction.
I encourage to keep building on this strategy for a fuller recovery.
Keto is an awesome diet to follow. I lost 90 lbs the first year but gained back 45 when I ate my first bite of sugar and my body craved it after that!! Keep it up and you’ll be happy you did! My plan is to start back and get this extra 45 off and some!! It’s all worth it! Plus you don’t hurt as bad because the foods you eat determines how you will feel! Good luck everyone!
My sister and I have fybro. She is on the keto diet and has lost 4 stone since feb so in 7 months her body has changed and has also managed her pain better. Hope this helps. The keto done right is really good for you.
In my experience, some people find that transitioning to such a diet when they have fibromyalgia/CFS/POTS is troublesome and makes their condition worse.
I always recommend caution around making such extreme dietary changes.
Another example is fasting. There is much evidence about the health benefits of fasting and I think healthy people can greatly benfit from this – but again, people with this illness often get much worse when they fast. I explain why this happens in the book and the program, but basically it is because it triggers the nervous system.
I have severe fibro, am 63 years old with several co-morbidities. I’m 5’7” and 117lbs and I can’t gain weight to save my life, so to speak. I admit to eating a pretty clean diet with the addition of the occasional ice cream. I am way beyond exercising anymore but I do care for my elderly MIL who is still mobile. Currently in a fibro crisis, not just a flare. I’ve been dealing with this disease longer than I haven’t. I’ve seen so many doctors and have read so many books and articles. Still do. I believe it acts up at will, with little regard for what we do. We can slightly influence a mild flare here and there with over activity/stress and feel better with healthy food (who doesn’t) but other than that it’s a crap shoot.
I am sorry to hear that Judi – hopefully things settle down soon.
Yes, reducing stress is key, that’s why it’s a key strategy for people to recover.
Have you watched any of the fibromyalgia recovery stories?
I found that the best advice I’ve received over the years is to quit sugar. At the time I heard the advise as impossible but over the years I’ve seen it is the best medicine. It is similar to what I imagine alcoholism might be like. I’ve been carnivore for 4 mos and cutting out all carbs helps immensely with the symptoms. I’m sensitive to all carbs and cough drops can spine into intense cravings but I’m learning that giving in just brings on the symptoms and makes it harder to climb back out of that pit. And a tbsp of real butter will usually stop the craving or some natural salt. Fat is my energy source now instead of carbs. Try looking into Keto diet and after a few months, start eliminating things that might be symptom triggers. Coffee is my next and last elimination challenge. Hope this gives some hope… It is a lifetime journey.
Same here my doctor is making me take medication for my fibromyalgie and there is 2 meds that cause weight gain, im a person Who needs to move around , now i have fibromyalgie chronic pain i need to use a walker to help me walk, i ve tryed soooo many medication i used to be in good Shape now i ve gain weight and i ve tryed everything. I m 46 years old and i have no one in my life why i dont want anyone to go through what im going and my moral is low , also have a learning disabillaties, and im trying cannabis oil but i find there is no change .
What do i do now my doctor has given up on helping me.
The key Teddy is to move beyond treating symptoms and address the root mechanism of the illness.
As people recover from the Fibromyalgia as a whole, the symptoms abate. Treating the symptoms in isolation is not only not very effective, but not really logical.
Have you seen any of the recovery interviews?
I am the same way. I found one I love ❤️ it is called body groove Delicious Dance by Misty Tripoli. You will love ? it. She’s fun, easy and just do it your way she says. Worth the try!
I saw this advertised on FB and it looked like something that I could do. I started doing some of it in the pool bc I sweat so much! I can get out of a lukewarm shower and within minutes I ama giant sweat all!
I’ve heard this so many times…and ‘You just have to MAKE yourself do it”.
Unfortunately most people with Fibromyalgia tend to push to hard, which usually makes things worse. ?
That is what mine said and I just wanted to scream.
Your so right about doctors, and they haven’t changed. In my records pain in knees, don’t know why. Other things that they put are lies. My brother actually called me a liar! I have chronic dry eyes, & mouth. I get tingles in my feet, hands freeze & my feet. Doctor says excersize, memory problems…. And more.
Sorry to hear that.
This video may support you on how to deal with some of those reactions!
Have you listened to any of the recovery interviews?
You can see you are not alone in dealing with such things!
I was diagnosed 22 years ago with fibromyalgia. 7 years ago I stopped going to the doctor because I just thought every symptom was due to fibro. Well I had to go recently for a torn meniscus and they ran cbc….sjogrens and elevated ANA. So yeah even though it feels just like fibro doesn’talicua make it a fibro symptom for you personally
Sharp pain in corner of eyes, jaw and teeth hurt so bad you have trouble eating, very week legs and heel pain you can hardly walk.
Same with me.
Hi Carole. I’m not a doctor, but I have lived with a multitude of Conditions for at least 27 years like Primary Shogrens Syndrome, Fibromyalgia and atypical Trigeminal Neuralgia. You describe jaw pain, teeth pain and pain in the corner of your eye which describes Trigeminal Neuralgia very well. If you have not seen a Neurologist already, I would recommend that you see one and rule TN out. God bless and I pray for all chronic pain sufferers.
I experience horrible tremors as well. I was hospitalized at 15 believing to have a brain tumor. They still never told me what caused the tremors I am so glad to know I am not alone.
I was diagnosed in 1988, but I was not told much about fibromyalgia. In looking at the symptoms I have had or have had all. I am now 69 and Have since gone on disability because I never knew how bad a bout would be or for how long the flare-up would be. I have days when my skin hurts and I am lucky to get by with a baggie dress, or how to move my hair hurts like a headache. I am so glad to have listened to your talk. I am sure my 46 yr. old daughter has it as well Her dr. doesn’t seem to see it. maybe by showing my daughter this she will have more info to share Thank you and keep up the good work.
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I was diagnosed in 2011 along with a myriad of other things and all of the things that I have experienced since then including the mouth sores, panic attacks, extreme fatigue to the point where I cannot stand up while I’m in the middle of work and kind of melt to the floor and have to have someone come pick me up. I have continuously gotten worse with more and more symptoms. I have vasculitis as well and it has spread up through my torso, my feet and one thing that is really odd but I’ve never heard of before I end up with various spots around my body that will swell up and be hot like there’s a fever in it and just one spot or maybe two at a time about the size of a tangerine on the side of it my knee or my elbow or my head takes a couple days for them to go away. What I would really like to know is how did you manage to get disability.? I have been trying since I was diagnosed I have not been able to work more than a few months at a time and I was just denied again. And the thing is I don’t care about the money I need the medical I have so many issues along with ones that are not associated with fibromyalgia cirrhosis of the liver lymphoma arthritis and just weird odd things like the hair on my legs and arms growing backwards but I can’t seem to get them to understand that I am disabled and I cannot work. I have applied and applied and applied for years and I finally had to apply again in a different state because my 83-year-old mother, of which I am a caregiver, and myself had to move from Oregon to South Carolina where am I one of my seven daughters lives, because we can’t take care of ourselves and I am at such a loss and so frustrating I just don’t know what to do anymore. I was a stay at home mom for 25 years raising seven daughters.And between the trauma of the teenage years and then a nasty divorce and being thrown back into the workforce at 52. I was a mess I’m still a mess and I don’t know how to get Social Security to understand that it’s all part of the same thing. Anyway I appreciated reading everyone’s comments this is the first time I have engaged in a conversation with others dealing with what we deal with anyway again I appreciate the information and if anybody has any other ideas about Social Security please let me know. Thanks Deb
Hi Deb
Sorry to hear about the difficult times you have had.
In time, hopefully this illness will be better diagnosed and more legitimised to make it easier for people to get appropriate support.
Hope the website and recovery interviews support you.
I’m so glad to see you’ve added tremors, a symptom I experience daily by simply getting dressed or standing for five minutes or more. When reporting it to doctors, they appear uninterested, especially when I report that with the tremors, I sweat profusely.
I have had similar experiences. Thanks for sharing. I’ve actually tucked fibromyalgia away on low priority. I am under extreme stress moving 400mi away. Buying a new house. I guess I may be having flare-ups as I have days of extreme pain with a day or two catching up. Exhausting.
I was dx’d decades ago & prescribed meds I couldn’t tolerate. So many on these lists, I have been dx’d with IBS, tinnitus, restless leg syndrome, vision problems, sleep only with medication, & so much more. I believe my mom had this. All the tests she went through with no answers.
I do want to try to heal from it. Memory fog problems, can’t walk very far w/o weakness & pain. Yes, so much could be fybro. Headaches, depression & arthritis. The list goes on & stress makes everything worse. I don’t go to my Dr often because he’s no real help. Used to be very active breeding & training GSD’s. Horses, crafts. Pencil artist. Now my hands twitch too much.
Never ending story.
Yes, there are a lot of us that can actually say, “I know how you feel and know what you mean”. Its a tough row to hoe, but our strength “an come from our Lord. God bless you n yours.
Muscle tightness yes. Kinks quite often where an injury may have been which is my case. Hurting to breath when areas on the body used to much. Weak enough somedays to not lift a utinsel or get supper ready or do anything fun because all energy saved for work. Pain going down your neck into your shoulder blades and up the jaw area so they swell. Not very flexible anymore. Hips sore if walking up and down the stairs to often. Stretching doesn’t take the kink away and massages feel like I have been run over by a truck. My eyes bug out. Chiropractor no good since muscles don’t stay in place for longer than 20 min. Those are the worst times but I still manage to work, sometimes that’s about it, other days a little more can be done. Medication? That’s the hard part. You need money to keep paying for a medication that hopefully works or time to do research to maybe heal yourself.
I get how you feel.
Not sure about medications, there are no magic fixes for fibromyalgia.
If you listen to how others recover from fibromyalgia, few have done it with meds.
Have you listened to many of the recoveries?
My rheumatologist put me on neltrexon for my extreme back pain caused from fibromyalgia. It’s the first medicine I’ve been on since I was 12 that isn’t an antidepressant. Other than causing insane dreams it is a pretty good medicine.
Pain every where! I have nerve pain that radiates from my neck down my arms and into my hands bc I had nerve damage at the root of C7. I had a double disk fusion, but it was too late to prevent nerve damage. I also have a torn rotator cuff that they will not do surgery on bc the rehab is grueling and surgeon felt that I would not recover enough to make it worthwhile. Now I have similar pain in opposite shoulder.i have more range of motion but similar intensity of pain.
I have the numbness in my hands an feet even though I have had a spinal fusion on my C5C6 C6C7 , I have neuropathy in my feet also , at times when I got to the bathroom I go numb from the waste down hate that feeling of not being able to get up an walk . I have also had rotator cuff surgery recovery was slow but getting there . I have jolts that I get stabbed in my shoulders , knees, feet , even in my eyes . Constantly cold hurt all the time the pain seems to never stop , I am now having dizziness and having blackouts which I’m thinking is POTS will find out more at next dr visit . Just hope that one day we can find relief ,
Me too I started going numb from knees down since I had total knee replacement last summer.I too hate the feeling or I will be walking and my good knee goes out.I fell the other day and I could not get up hubby gave me his walking stick and granddaughter put a chair beside me and thank god my feet wasn’t numb but I pulled myself up. My knee surgeon was right he said I’m done doing anything on my knees I used to scrub my kitchen floor on my hands and knees and now with the good knee going bad I don’t know what I’d do if I was by myself.I hate this helpless feeling and all the pain that goes with it. I found out when my legs start to tingle get a pain pill and i take it till it works the tingling is gone.my pan is all from my lower back and down my knees sometimes I get the feeling of hurting all over but not too much of that.I cant sleep at night and when I go to sleep at 4-5 am and sleep till noon my hubby nots happy but he understands.but there’s days I feel so ashamed cause I’m 66 and he’s 74 and he runs circles around me.their said walk more but with arthritis in your knee and lower back it’s hard and so much pain.So I bought a puppy I am walking more but my back isn’t better my dr the other day upped my pain med it helped but not 100% she was suppose to send me a new back med to try but didn’t get that yet the one I’m taking don’t do anything.it’s suppose to get rid of the inflammation but it dosent
God bless you.
God be with you. May He make a way for you. Sometimes when you can’t afford your medications, you can contact the company that makes them and they’ll help. Check it out n see. My husband was just put on Entrestol n it’s over $500.00. We have insurance, Medicare n AARP, n his part was $155.00. To us that’s as bad as the full amount. My daughter sent me information on how to contact the company to c if they can help us. It’s rough living on two SS checks, but hopefully we’ll be able to get some help. My mother got one of her prescriptions free by contacting the Co of hers.
I would like to know how people maintain a quality of life that’s worth living?
I seem to have a lot of these symptoms gradually and consistently worsening for the last 6 and a half years and doctors don’t help, maybe they don’t believe me or they just don’t have any ideas of what to do or who to send me to.
My quality of life continues to decrease… I have not much hope for doing being or having anything in life that I wanted or that I see other 27 year olds doing being and having.. every single basic thing is so, so much harder!!
I have only 1 diagnosis of an autoimmune disease, but MANY, MANY other ambiguous/ autoimmune symptoms that seem to be fibromyalgia.
I have Fibromyalgia . Symptoms occurred after auto accident in 1997. Also a lot of other very stressful situations entered into the picture during this time. The FIRST AND FOREMOST thing is to take care of you first!!!! Then find out what you would like to do or what interests you, etc. fishing, golfing, well by now you get the picture. When you have decided then go about it very slowly at first. Example you may love horses but cannot afford one. No problem check with local people that have stables and volunteer to help out with grooming, feeding etc . Explain your condition to the owners and you will see that most are more than willing to help you out. If you can only do volunteering for 30 minutes it will lift your spirits and do these things as often as you can. I bought a horse and I realized that when I knew something else depended on me getting up and taking responsibility for another life my life improved dramatically. So whatever it is you choose remember to put yourself first. Good luck and God bless.
We too bought a horse 8yr ago, I was sleeping constantly waking to go to bathroom or food, it was my lowest most stressful I’ve been, I blame the meds tbf, as docs changed my meds and i got into a place where the horse was a thing my daughter was given by her father. It made me step up alright, best thing that happened was the meds change and something to give that extra push, like you said a life that you have to preserve . Unfortunately my exhaustion has crept in with menopause , so feeling things a bitty more challenging, I wouldn’t recommend going all out like we have unless you have a support system just incase of flares , but having a dog or cat , a Hoby that brings you pleasure I whole heartedly say try a little give yourself something no matter how fleeting , you deserve to smile, feel happy even threw the pain,
Your response is so heartfelt. She us entirely too young to get stuck in the woe is me rut. Your suggestions are inspiring. I pray she allows herself to be involved in something. M praying for her also n you and the others. God bless you n yours.
I have had fibromyalgia for 33 years. One note of hope: it doesn’t stay the same. Every now and then there can be a remission where you get better. It eventually comes back but the breaks allowed me to pursue my goals. Look forward to these.
Many people enjoy these ‘remissions’ for longer lasting recoveries.
Understanding what causes the remsisions and flare-ups is key!
Have you watched any of the recovery interviews?
As hard as I try I can never remember what causes my flare ups as it could take my body a few days to react, not that I do anything to cause me more pain.
I do know my body feels like a barometer forecasting rain or high humidity swelling and so painful. I do have most symptoms but tremors are what scare me most of all. Eventually they ease but I had a bout that lasted several months.
Tomorrow its more blood tests to see if the heavy hair loss, painful arms and dizziness is related to another illness. I almost hope it is, and can be fixed. Thanks for the insight into a very nasty illness
Iam the same I have no idea my triggers no idea how to stop them either, it’s almost a case for me to ride it out, Only the other day found out iam not tolerating gluten so well , but that’s my menopause that’s brought that to light, god knows how long that’s been going on or completely new, feels new . I feel we all have sensitivities that at times can trigger but it’s nailing that what is it . Mine seem so random so I think ?
Great! And God bless you!
Don’t give up! You r too young. I’ve fought this evil demon for a lot of years, I’m 74 now. It still hurts n I’m always exhausted. One of my daughters, an R.N., has a hard time believing I hurt so much. She may have to find out the hard way if her aches n pain don’t go away. Have you tried a Rheumatlogist? They are the ones who mostly treat Fibro patients. Call first n ask if they take care of Fibromyalgia patients. Good luck and may Almighty God lead you in the right direction.
Integrative/functional doctors are also very good at treating fibro/CFS.
Hi Krysta
Well, I wonder if you can see the distinction between treating symptoms and treating the underlying illness?
Have you watched the explanation videos or fibromyalgia recovery interviews?
Of course I can. I had an amazing doctor/ teacher….Dr. J Teitelbaum ?
“Post” Menopausal/Fibro diagnosis And the three words that changed my life … LOW DOSE NALTRAXONE!
Great to hear Sonja
So what has been the impact on your symptoms and flare-ups?
How long have you been taking it?
What happens when you stop taking it?
great article! I’ve have fibro from 12 years and many of the symptoms you talked about.
QUESTION: is there a cure?
Hi Matteo,
There is no magic one fit all cure – however, people can recover their health fully.
I explain how this is possible in the explanation videos and discuss it in this article: https://cfsunravelled.com/the-ugly-truth-about-looking-for-a-cure-for-fibromyalgia-and-a-cure-for-mecfs-that-few-dare-to-admit/
I do not believe there is not a cure. Symptoms can go into remission which I have been fortunate enough for the past few years. Lately I feel like they have surged badly making me feel more depressed and fatigued. I take Gabapentin and Tumeric when I flare. What a pain in the ars.
Hi Muff
I don’t like the word ‘cure’, because it’s not about a one-fits all solution!
However there definitely is a path for recovery and understanding how fibromyalgia works is a key component of that.
Rccx theory, Ehrlers Danlos. MTHFR mutation, genectic based CFS, and fibro, my fibro is such that my arms and legs are painful to touch, and when I try to massage them there are miniature knots all over that when rubbed can send severe nerve pain all over
Fascinating. Although 35 years ago,from the age of 23 I had the most extreme PMT causing horrendous rages, I was aggressive and abusive to my family. It caused so many problems. Drs didn’t understand, after I had my 2nd daughter I pleaded for a Hysterectomy as I saw it as the only way of ending the monthly torture. The PMT, the heavy bleeding, stomach cramps, & migraine.
Fortunately I was listened to& after my surgery just before my 30th birthday. The majority of the menstrual problems disappeared.
I had various other health symptoms from then on, tiredness, painful hands, bowel problems, headaches, lethargy. Sore throats, nausea, sickness, memory problems etc.
After various other issues over the years, I was eventually diagnosed with ME about 12 years ago, then Fibro a couple of years later, gradually gaining more and more symptoms. Now I struggle with mobilitu, have horrendous pain, my memory is almost non existent. I have speech issues, my eyes and vision are affected meaning I am now hypersensitive to light.So many health problems, I also have depression and Anxiety which have affected my going out & socialising.
Yes it’s a rough journey isn’t it!
So how do you feel having found the website now?
Are you more hopeful?
Did you look at the explanation or recovery stories?
I have all your symptoms. Just hang in there and learn how to do at least 1chore a day. It’s 12/23/2020 and nausea and pain woke me up at 2 am. Love you. And God bless you and your family.
Do any of my fellow FMS ppl experience severe foot pain? I limped around for a year, years ago, before seeing a podiatrist, who told me I had a benign tumor, which he surgically removed. Years later I’ve begun having the same kind of pain on the other sole. Sometimes there are stabbing pains that go from my foot soles all the way up my legs to my groin. They happen randomly and often make me scream, involuntarily. Sometimes it’s an extreme soreness when i put weight on my foot (that is, when i walk!). Sometimes it’s both simultaneously along with a weird, not painful, feeling like insects or worms are crawling around my ankles. As bad as all my feet drama is, it’s like a fun day at the park compared to my hand problems!
I also have severe foot pain with my fibro. I have found that, often times, good compression socks, like those made by Tommy Cooper, help alot.
I have the same thing. Once I thought the plantar facisitis(?) had come back n thay was Painful. Has anyone told you how our nerves add to all of this? The pain in my feet is horrendous at times. It’s August in Southern Mississippi n the heat has been terrible. I still wear ankle socks and have arch supports or something like that from Dr Scholls in all my shoes. I got a pair of slip on Sketchers n put the insoles in and they help tremendously. Doesn’t take the pain away 100%, but does lessen it. The front of my feet, my toes and pad, are numb, but hurt bad. Doesn’t make sense does it? Also my ankles do the same thing. Like bugs are crawling all over you. Once in awhile, on my legs, in the I side, the same thing happens. It’s a Terri ble thing thus Fibro, n I hate seeing anyone go through it. But, on the other hand, I’m glad there are others who have the same thing, so I know I’m not crazy or a constant complainer. God bless you n may He touch you and rid you of this evil disease.
I have excruciating muscle spasms in my chest and stomach. I actually had a heart cath because of these and of course they found no problem. I also have extra heart beats. They come in 3’s and 4’s instead of 1 beat at a time. It wears on you
something awful!
Same!! I get weird palpitations and chest pain which causes panic attacks. Used to think I was having a heart attack but after several E.R. visits they say it’s just linked to my fibro. Some days I can’t walk at all. My mobility decreases as the day wears on so by the time I am off work, I am couch-locked. I really want to start yoga again, as it definitely helps the pain, but can’t bring myself to because everything hurts. It’s a vicious cycle.
I had to go to a heart specialist also…nothing wrong with my heart or blood pressure but i still take atenolol to keep my pulse lower. But i also take anti-anxiety Rx as well.
I found the article very insightful. Having Fibromyalgia myself it’s very frustrating to me. I report a new symptom or symptoms to my pcp. I am asked to go in for a office visit,which results in there is nothing wrong just a flare up. I am asked if I am following my care plan. The answer is always yes. My pcp will order blood work. It’s the same thing over and over. I have given up calling my pcp because I feel like I am wasting everyone’s time. So as a result I try to do my best everyday even though I don’t feel very good, and in a lot of pain.
Dear Necol I know how wuful it feels when you are looking for answers to your condicion and all you heard is that your blood work is normal. I spend years and years looking for answers. When finally a doctor talk to me about fibromyalgia I felt relief, finally I was sure that I wasn’t crazy after all.
But the most important thing is know that I am not alone.
Be strong and never gave up, you will have good days too.
I am glad I read this there have been times I thought I was going mad. I have had fibro for over 20 years with other conditions just taking a shower and geting something to eat takes all the energy ive got
It is maddening isn’t it!
Understanding how these symptoms are connected is key for recovery.
Me too. I stare at the ? and just tell myself tomorrow. ? I learned to say no even to me. God bless you.
How about suicidal thoughts for those of us trying to cope with constant pain ?
I think many of us are pushed to that edge.
The key is getting help, reaching out to a psychologist to help you express your feelings and to stay safe.
Make sure you tell some people you know if you have such thoughts!
Yes Cheryl, make sure you communicate with someone when having those thoughts. It’s very important for you not to consider those. It could also be a side effect of your medication. Mention this to your PCP and maybe you need to try a different one. You are a very special person and someone very important. Rebuke those thoughts and ask the God All mighty to redeem and heal you, he is the same today, yesterday and forever!
Hi Cheryl. I just want to say I understand. Make sure you have a support person that you can talk to 24/7.
Hi….I must agree that the pain is relentless and just makes me sob, creating eventually stupid thoughts . It’s BC of exhaustion.?
It’s tough Cindy.
Getting some emotional support from a psychologist can be really helpful for your recovery efforts. ??
Yes, but never I would hurt my children, my grandchildren and besides I known my Lord God almighty and my Lord Jesus Christ know when I will go. But no never
I have fibromyalgia really bad. I found out I had fibromyalgia when I was doing water aerobics and down for three days. I feel exercise makes my body aches more. The cold makes it worst and high humidity. Since I had it for years, I feel I am getting more and more pain as I get older.
Hi Mimi
What you describe is common for many people.
But hopefuly you can see that the message of cfsunravelled.com is that recovery is possible.
Have you watched any of the recovery story interviews?
Great article. In 1997 I was diagnosed with fibromyalgia, after about 5 years of searching for a doc to find something. I truly believe that a diagnosis is half the battle. I think, even as bad as my pain is, that the vomiting and nausea was by far my worst symptom. Fortunately it has stopped. It wasn’t just puking, it was “Exorcist”, head spinning, pea soup shooting across the floor-kind. I was hospitalized 6 times in 3 years and a cause could not be found. I’m 5’9 and for most of my life I weighed 125 lbs., but in the middle of this mess I weighed 90 lbs. I looked dead. An Angel was abt to enter my life. Short version: my son in the navy moved to Hawaii, we followed, 2 trips to ER, doc suggests a doc, I go, she prescribes Lyrica (and morphine pain pump put later), she says since I wasn’t eating I was starving myself, devoured food, gained 50 lbs, went back to work. She literally and figuratively saved my life (soul and spirit). Once I started getting better I had several ppl tell me they thought I was going to die. I still deal with the pain, muscle/skin soreness, actually everything on your list, plus several more. Thank you for doing the research about FMS and writing this article. I truly appreciate it.
Thanks for sharing.
Wow, that weight loss is truly frightening.
It’s interesting how people often describe weight loss and weight gain in the interviews, but once they recover from the illness their weight stabilises.
It was an article that I will copy. Some friends & family may understand my behavior better! I also have Lupus. Again some of the symptoms seem the same.
That’s such a big issue isn’t it – people simply not understand us. ?
Along with everything mentioned, itching is common symptom for myself. Not the rash type, more just under the skin type. Often starting around late afternoon and becoming worse as night comes on. Have tried different creams nothing makes a difference. Also noticing an increase in sight difficulties.
Good one Terry – so true, I know many people experience this!
It is so helpful just to read some of these symptoms because I wasn’t aware of a lot of them. I always wonder why my skin hurts, (literally hurts when my clothes touch it or if I try to wear shorts I can’t sit on my sofa because it hurts) my family thinks I’m nuts so being able to show them this article will be so enlightening. I also didn’t know that insomnia was a symptom. I’ve suffered with fibromyalgia for years and insomnia just as long. I guess I need to go over some things with my dr on my next visit. Perhaps some of the meds I’m taking aren’t necessary. Perhaps it’s just part of my fibromyalgia. Thank you for the helpful article.
You’re welcome Tess
So many people don’t realise that these symptoms are related and connected.
It’s my view that this realisation that there is one central cause is really key to recovering from this illness!
Hello! My namne is Christine and I have lived with fibromyalgis since 1994 and have had to use a wheelchair fore periods of time when my pain has been to severe. I work as a souschef and started to experiment with different food on myself and found that you can take away a LOT of the pain if you eat a bit different. Cut out 80 % of the carbs and eat much more fat you will feel so much better and start with low cardio training dayily.
Indeed these kind of strategies can help.
The key to a full recovery in my view is understanding WHY they help, so that you can have a deeper multi-lateral recovery approach.
Thanks for sharing.
Thank you for sharing your insight and this inclusive list of effected systems, addressing the complexity of diagnosing, explaining how differently fibromyalgia can be experienced, and describing the impact of a chronic illness. I am one of many in my family who was finally diagnosed with fibromyalgia, after years of misdiagnoses and suffering. But, my symptoms have not readily matched other people’s. Add the exacerbation of so many inappropriate medications, and I have been unnecessarily challenged and sorely misunderstood. That makes for a deeply painful, isolating life. I will try to follow your advice and refrain from researching others’ experiences, but I am so curious how my symptoms could be addressed.
When symptoms may caused as side-effects from medications, it gets even more complicated doesn’t it.
Working with a functional medicine/integrative physician can certainly be helpful in conjunction with a comprehensive recovery plan.
However, my experience has been that treating symptoms often has very limited success until you start to recover from the syndrome as a whole. Hence my catchcry of ‘treat the cause, not just the consequences’.
Feet… My feet hurt so bad most days… I just want to chop them off. The burning, the pain shooting through them… The swelling.. Ugh!! It is absolutely unbearable.. Can’t wear shoes, that’s out!!
Neck and shoulders continual pain. Sometimes so bad you just want to die… Can’t hold head up, hurts to lay down.
I was diagnosed in 2003 and in the last 2-3 years has gotten progressively worse. Oh and hips… How can I forget. But I also have pelvic girdle disease,along with many, many more illnesses.
So, I hope this helps some. Thank you for your article.
Is there any relief for fibromyalgia?
Hi Ray
As you have probably gathered, there are a million and one remedies, but there is not one-fits-all ‘cure’.
Having said that, many people recover from fibromyalgia and do so in many different ways.
You may wish to listen/watch the fibromyalgia recovery stories as a starting point.
Thank you for this article. I was diagnosed with Fibromyalgia 3 years ago and I truly believed that it was just a throwaway diagnosis because doctors couldn’t figure out what is going on with me.
A couple of symptoms that I have that I haven’t seen posted yet are; Costochondritis, Butterfly Rash and tingling and numbness in my face.
LDN has been a great help to me. A couple times that I have been off it I get very lethargic and fatigued, ane my muscles get very sore and heavy.
I have been on it for 3 months continously and it helps tremendously with my fatigue and also with the deep muscle pain.
Definitely not a ‘throwaway diagnosis’.
Even your costochondritis is related to the root cause of fibromyalgia.
Understanding how the symptoms are related to the root cause of fibromyalgia is key for recovery.
A butterfly rash on the face can also be a sigh of lupus.
Hi I,m Helena sound familiar to me.
Thank you for a very thorough and informative article. I worked as a RN for 34 years, 24 of them with fibro. The pain worsened through the years but I had to finally go on disability d/t cognitive disturbances. I can’t even describe the horror and fear I experienced with the loss of my memory, simple math skills, disorientation, confusion, difficulty writing and spelling. And the most difficult thing I find, is no one understands what we are feeling or experiencing b/c we look normal & it’s “just
Fibromyalgia “.
Yes, people never understand which is why I created this video about STOPPING how you wrestle with that issue!
24 years is a very long time – can you still imagine yourself recovering? Have you listened to any of the people who recovered after very long term fibromyalgia?
I have had this for almost 25 years so bad I had to go on disability, and do not believe it will get any better at this point. Like I said, arthritis is eating my joints, knees are about gone. I cannot take any drugs that they think might help. I am very allergic to chemicals. I cannot take anything for pain at all, only Tylenol and it runs my liver enzymes up. It does not help enough to take the chance of damage to my liver. I have never drank. Bad liver just runs in the family. I stay so much more tired from lack of sleep and pain. Don’t have any answer. I eat pretty healthy.
Same with me. Nurse since 1999. Had to go on disability I also had the same symptoms.
I have night body twitches, extreme fatigue from insomnia and pain, hypothyroidism, history of IBS, malabsorption in the intestines joint pain, stiffness, skin tenderness, low body temp, intolerant to chocolate, fast food, red meat, sicky sweets i.e. cheesecake,(Eat a lot of chicken and vegetables..gets old after awhile) vitamin d deficiency and endometriosis that was resolved in 2004 with a partial hysterectomy (WAS NOT ABLE TO HAVE CHILDREN). Atheroscerosis from past bad eating habit and cannot eaxercise due to extreme fatigue. Depression/anxiety. Not aroused until after we get started “playing”. And I am only 58.
This is probably one of the very best explanations of fibromyalgia. And really explains why this is such an overwhelming syndrome/disorder….condition.
So thank you, well done and most thorough.
Glad you liked it Angie. What did you think of the explanation of the cause of fibromyalgia?
That is the best description of the illness I have found so far. And I have the illness for over 20 years now.
Thanks for the feedback. I hope you find the fibromyalgia recovery interviews uplifting! 🙂
No wonder, I have been diagnosed with Fibromyalgia some years ago. I have many of these symptoms. I used to be lore active, but with the years I’ve notice a decrease in my mobility. I will not give up, I have changed my eating habits, I’m going back to work out, and thank God I can Still work. I don’t focus on the pain or on things that remind me of this syndrome. But on conquering what I can. In Jesus name. Amen!
Glad you found the article helpful Argelia.
Have you listened to any of the recovery interviews?
What did you think?
Thank you for writing this. I ferl that with so little understanding about FMS , the people around us become almost indifferent out of ignorance. It’s a lonely disease cause there’s nothing “visible” .
In time, with more knowledge I hope it will be different. Thanks for not showing us we are alone.
It’s not always easy coping will other people’s reactions to our invisible symptoms.
That’s why I created this vlog about what you must do to handle that!
I had a traumatic brain injury back in 2010. I was struck in the face by my ex husband. I was leaking spinal fluid for about 2 years before the Nero surgery operated. After the surgery was was knocked down by extreme vertigo. Over the years many new symptoms have started. The pain in my body is awful. The brain fogs are scary. There are days I can not put one foot in front of the other. This past Tuesday I saw a new doctor. She put all my symptoms together and is 95% sure I have been dealing with fibromyalgia all these years. My stomach went into knots because all I have ever heard from people is fibromyalgia is not real. This Doctor assures me it is very real. I trying to do research on my own and this by far is the best article I have read. Thank you.
Fibromyalgia is absolutley real and whilst there is no one-fit-all magic cure, the fibromyalgia recovery stories will show you that recovery is absolutely possible.
Check out the explanation video to understand how and why you got ill!
I been suffering with fibromyalgia now for 3 year and can say reading this article I check every symptom. Some day I feel like I can even walk or hold things with my hands I take My meds but some day worse than others.
It’s tough dealing with the illness Mirtha.
Hope the fibromyalgia recovery stories inspire you!
Shudder steal dry throat so firewall I have to suck avoided sweet else I start significantly walk very far also I have symptoms of electricshock across my Rothwell my tummy teeth feel loose as off they are going to fall out then the next day it will have gone cloudy eyes can’t see properly
There is no silver bullet we have to keep on keeping on
I am a man and I’m 74 years old I’ve been in this battle for the past five years probably still newbie to a lot of people
Yes, no silver bullet, but recovery is possible.
The key is focussing on the root cause rather than symptom treatment!
I will throw this out there eliminate all sugar and tramadol that seems to help me some
Yes, but more important is understanding WHY that is and how the sugar triggers the nervous system!
Thanks for sharing.
I am not sure if this a part of my fibro but my ears itch and I get a lot of crusties in both ears.
Wow. This is me.
Body aches – feel like fever
Left thigh (Paraesthesia)
Extreme fatigue
difficulty concentrating
confusion
memory problems
difficulty processing information
word retrieval
Frequent urination
Excessive thirst
Unable to regular body temperature
Red faced profuse sweating
Face/eye muscle freeze
Morning stiffness
Alcohol intolerance
Painful lymph nodes (groin, neck)
Who do I make an apt to go see? I am currently taking Lyrica for chronic pain. I have always felt like there has been other things going on in my body too but I have never been able to pinpoint it until I read this article. It all makes sense now!
I get a weakness throughout my legs. During one attack, my legs were so weak I couldn’t stand up and when I tried the dizziness was really bad. This resolved after about a day and a half spent in bed. I get a lot of the symptoms listed as well. Usually, the first sign of an attack for me is an aching jaw. I have learned to take it easy when this symptom presents itself.
Thankyou for the information, a great help to me. Now I know what is happening to my body.
I have fibromyalgia, was diagnosed with it after 38 rounds of high radiation treatments for my inflammatory breast cancer. I’ve had it for 20 yrs now. I have most of the symptoms on this list. They are interesting as they come in different ways. Some days I’ll have pain, shortness of breath, headaches, brain fog always come with it and the pain in my feet and legs are unbearable. My eyes are so dry from the chemo and radiation that nothing works and along with that comes blurry vision. There is hope and it is for you too.
I found a wonderful chiropractor in my hometown in Severville Tn Dr. Bagiley is my life saver.
She has these awesome techniques like ultra sound, low electrical pulses, cold presses. She has helped me in so many ways. She listens to you and tells you how to go through out your day slowly and not over do to much. She was a God send for me. One other thing I do is the Groove videos Delicious Dance by Misty Tripoli . She is so much fun and I love ? her personality. She makes you feel happy. I encourage you to try it. Praying for all fibromyalgia brothers and sisters all over.
Warmly,
Jacque Householder
I have had or still have every one of these symptoms listed. They come and go, sometimes at alarming times. I just do what I can do!
Have you listened to any of the fibromyalgia recovery interviews?
What did you think of them?
After 20 years of trying to get a doctor to believe that I’d had chronic Lyme disease I gave up then while working for neurologist as a nurse I read an article linking fibromyalgia to Lyme disease and was able to finally get tested for Lyme and subsequently diagnosed with fibromyalgia. Fast forward 12 years and I see a commercial that further describes me- and talked with my Dr about testing for Psoriatic arthritis. Sure enough I test positive for that , oh yeah I’ve had IBS since I was in my teens. I’m 60 now)
That’s not really the way we want to get diagnosed is it!?
So frustrating! 😐
I have fatigue so bad I fall when my legs give out. I fell 6 times in 2019 and 2020
Damaged bones in palm of hands plus right knee again. When I fall no one can help me up due to can’t touch my skin.
It’s rough sometimes.
Hope the recovery interviews are inspiring you to take some little steps forward.
I cannot believe how good this article is, thank you SO much Dan Neuffer! Finally a realistic list of all sorts of (side-) symptoms…..With this article I can go to my doctor well prepared.
???
I have phone that with fibromyalgia headaches amitriptyline works great. I also take Cymbalta for some of my nerve pain and anxiety may help others just the tip
That is a very good article. I have suffered with fibromyalgia for many years now. Unfortunately my symptoms have got worse. So many people don’t understand the illness but it was explained so well in your article. If only people understand the illness and know what we suffer. People look at you from the outside and really don’t know what your going through. They think you look ok. I wish the doctors understood the illness more.
Very frustrating, always trying to figure out if I’m sick with something such as a virus , allergies etc . So many times I feel as though I’m coming down with the flu . I ache , feel bad and tired !
That’s typical with Fibromyalgia syndrome – you hear that in most of the recovery interviews.
I have been experiencing leg tremors that last for day’s when I exercise. I was diagnosed with Systemic JIA at 18 months and fibromyalgia at 12 years old. I developed leg tremors at 15 I am now 21 and the leg tremors have gotten better because I no longer try to exercise. I only go on walks. Does anyone else also experience extreme muscle pain or tiredness in their legs with little movement like climbing stairs. The pain is right under my knees in my shins. I also have multiple symptoms mentioned above. Can’t even cross my legs at church without them getting tingly within 4 minutes ????
Two years ago I gave up 14 years of training, practice and attending festivals, as a professional tribal belly dancer. Although exhilarating it was also exhausting and would take me days to recover. It was strange, like being in two bodies. On the one hand I felt energised and wanted to continue dancing however, the other half was completely drained after each 2 hour training session, twice a week. On top of Fibromyalgia I also have Discoid Lupus, thyroid nodules and I’m in the midst of menopause. The first 2 diagnosed this year by a rheumatologist after 16 years of multiple symptoms, which grow steadily worse. I think of all the symptoms I dread overheating and perspiring like a waterfall, the most – my thermostat has gone haywire. Heel pain is awful, very difficult to walk after being on concrete or tiles which is everywhere! I am sensitive to medication so, limited in what I can take. The headaches, fatigue and generally feeling unwell all the time is wearisome.
I have found other suitable alternatives such as Arnica or Comfrey Cream to help with joint and/or muscle pain. I grow my own veggies and prepare my own food. I try to keep moving. As the saying goes ‘use it or lose it’. When I was dancing I was also training as a percussionist in a local Samba band of which I became the music director of, 2 years ago so that was a nice transition. Aside from the ills and ails I am pretty content with my life of supportive family and friends, a little job and a bit of study with the odd indulgence in a favourite hobby or two now and then.
I’m collaborating with my GP at the moment to build a case toward applying for a partial capacity assessment with Centrelink (social services). It is extraordinarily difficult to qualify for a Disability support pension in Australia so, most disabled people are placed on the Jobseeker pension and in my case are expected to work a minimum of 15 hours per week; part time study hours do not count toward the 15 unless I apply for this assessment. I work 5 hours per week and study 10-12 hours per week. Anything more than that would render me bedridden.
Thank you for the YouTube video, it is good to see people such as yourself are seeing the bigger picture and getting the word out there that FM is ‘very very real’. My rheumatologist said FM wont kill me.That I am doing fine, just eat well, do lots of exercise and you will live a long happy life’.
It’s a tough ride with fibromyalgia for sure.
Hopefully you can appreciate the message of the website and all the fibromyalgia recovery interviews to understand that whilst there is no ‘cure for fibromyalgia’, people can recover. 😉
It is getting harder to know what is Fibro and when it is something else. The list of symptoms has definitely expanded since I was first diagnosed, which I am so glad for. However it is definitely had to fine a way to get help to resolve issues. Some doctors either lump everything in to result of Fibro or they act like I am a hypocondreact. Especially doctors in the mid south. Have change doctors several times looking for team players, to work to resolve problems. Moving halfway cross country to warmer climate has helped. Also stopped working in 2006, which also helped. Went from over 12 meds to 2 and now they added Atorvastatin20 mg for cholesterol and tell me pain may go up. REALLY? Like I need more if that. But every med for cholesterol does that, so what can I do. It is hard to find doctors in a small town who don’t want to throw pills instead of trying diet, exercise, etc. They tell me to do it, but can’t tell me how, even when I bring them a list of what I am doing? Can’t treak it for me, or recommend someone else to help me? I am from the North and not use to these kinds of doctors. So now I am turning to the Net and researching all I can. Have been living with Fibromyalgia for most if not all my life. First time a doctor said the word to me I was like 10 years old, but I believe they called it fibrocidise ( not sure on that spelling). Anyway thanks for listening.
It’s important to remember that there is no ‘cure’ and so a doctor cannot fix you per se.
However, having the support of a helpful doctor can do wonders for your recovery efforts as you will hear in many of the fibromyalgia recovery stories.
Working with a functional medicine or integrative doctor may be more helpful – see if you can find someone in your area.
I’ve heard burning mouth is also a symptom. This list was very in lightening. My anxiety has gotten worse since retirement. Not sure it’s from my fibromyalgia or I just don’t leave the house.
The list of fibromyalgia symptoms seems to be never-ending doesn’t it.
For years my rheumatologist insisted there was no such a thing as fibromyalgia and he wrote a very lengthy book negating the illness and implying that the patients were in need of psychological help. Then a few years ago McGill university, in Montreal, Canada, proved that fibromyalgia was indeed an illness. Today when you research fibromyalgia, you will read about 60 or so symptoms, of which I have most of them. I wonder what my rheumatologist would say about this today. I can’t ask him because I moved to another country but I feel better just knowing that I am NOT CRAZY.
It’s ridiculous to suggest the illness isn’t real, right.
So sad we still have to fight this fight.
Sharing this article about whether fibromyalgia is real or fake with medical evidence putting this to bed will help dispel such silly myths.
My Fibro started right after I had my tubes tied , 25 yrs. ago. Have heard of many others who started this journey after having Hysterectomies , have you been aware of this. interesting about a correlation with Lyme disease also. Glad to have learned many things from you and those who told of their symptoms . I also suffer with when I’ve over worked my feet don’t pick up when walking, this causes stumbling and tripping . Have you heard of this. When I first started experiencing pain it felt like someone was trying to p
ull me apart at my joints especially the elbows . Now I have major foot pain where it feels like feet are very dry and skin being stretched, was diagnosed with Neuropothy but the feelings don’t appear to feel the same as those symptoms . Have others described this also. Thanks again for this help.
I am having difficulty getting the VA doctors to take me seriously. After being medically retired from the military (partly due to FMS), my anxiety and PTSD got worse and my pain has gone from generalized and manageable to feeling like my skin is being eaten by fire ants, uncontrollable twitching/jolting, constant sweating and overheating, and when tremors start then I begin to panic and end up with ambulance at my house. My neurologist dismissed it as anxiety, my psychiatrist disagreed, my primary care dr just chalks it all up to FMS and PTSD. Rheumatology refused a referral because they decided they can’t do anymore, so I’m on my own – literally. VA doctors are the absolute worst when one has many medical conditions/symptoms…they cannot deal with complicated cases. 🙁
Yes, indeed. I’m in similar situation. VA doc should authorize community care rheumatologist since VA rheumatologist do not treat nor manage fibro. Otherwise, seek rheumatologist on your own. Understand however, you may have to wait a couple months before your appointment. So schedule ASAP. At least you will have actual diagnosis from a rheumatologist-army requirement. VA cannot disregard private treatment records. After several years of VA treatment, physical therapy, and medication trials without relief and many side effects, I decided to try managing on my own for another 4-5 years-trying supplements and homeopathic options, yoga, tai chi, cognitive behavior therapy etc.–to no avail. I recently reconnected with my previous rheumatologist-through VA community care to see if there would be any updated treatment options since I saw her last. So far some symptoms have finally lessened. My original claim for fibro has been with BVA for over 5 years now. Keep on trying. You should know that you have to look out for number 1–you. Keep seeking treatment. You deserve it. The VA certainly isn’t going to do it for you.
How about not feeling hungry…. I barely eat, but my weight increase sooo much…. also muscle pain like Charlie horse….I got them around the heart now….it’s very scary. But they say my heart is fine. ??♀️ So frustrating, never know if I should just rest or go to hospital
It is frustrating for sure – always important to get checked out and to report any changes in your symptoms to your doctor.
You may also consider support for an integrative/functional medicine doctor – they may explore the possiblity of supplementing with magnesium and other minerals to help you reduce the cramping issue.
Hopefully the explanation for the root cause on the site is helping you understand how these dysfunctions and symptoms are all caused!
They did put me on magnesium, it worked for a while but it’s starting again….
Fibromyalgia isn’t a symptom, it’s a syndrome with lots of symptoms.
Magnesium is certainly helpful for many people – but a fuller recovery usually involves a multi-lateral approach.
I had severe Fybromyalgia took cheap anti inflammatory tabs , gone in three weeks
Interesting Peter.
How long did you have fibromyalgia and how long have you been symptom free?
Hi, My practitioner is great. My issue is I cannot take the “Usual” meds prescribed for Fibromyalgia due to strong reactions. I am working to rid our home of chemical cleaners, to include personal products. I am cautiously incorporating Aromatherapies. With Covid-19, We are VERY CAUTIOUS.
If I go to pain management i have to pay $75/visit with insurance, for a $5 script. This is monthly.
I usually don’t join discussion groups, but get led to join in tonight. The pain discussion peaked my interest.
I put together a Soaker Detox-Mineral Salts bath with essential oils to help the pain and general muscular pain and aches.
I have already changed my professional position to work from home, but I still have to work, on days like this past week. Recovery takes longer and longer. I usually can fight off the depression. But today i just feel exhausted, depressed, and really concerned about being able to continue this journey like this.
I am told constantly to exercise! When I do any amount of weight bearing beyond some walking, it triggers a flare. I used my shower wall to do 5 push offs while under the hot water. It triggered a Flare for days!! :-/ What can I do?
Hi Maxine
Despite your experience (which is similar to many of ours) – exercise can be helpful.
The key however is doing it gently in conjunction with an overall recovery plan.
Understanding how the illness works, what triggers you and why is key to moving forward.
Have you checked out the other articles about how recovery is possible yet?
Ive had fibro since childhood. Was in public school and would come home and go to bed instead of playing. My mom would look for me and find a pile of clothes and me in bed just lying there so tired but couldn’t sleep for pains in my legs. She said it was growing pains. I met my husband at age 15 and got married at 19. Im 64 now and have 2 grown boys. They are kind but have no idea how i feel. They google all the time i wish they would google how i feel to have this awful disease. My dr. Almost rolls his eyes every time i have another problem. Right now im having trouble eating, swallowing and get get a deep breath. Going for more test next week but feel like cancelling as in 3 years of testing my breathing and my swallowing has been tested continually since i was 35. And no answers. I lost 50 in 1 1/2 years from throwing up and the dr just said( well you look good) come back and see me if you have any problems. I just wish my family and drs. Knew i wasnt just complaining as i push myself till i can’t move. So sorry for sounding so whinny. First time ive shared. Thank you
So sorry to hear that – pushing yourself really doesn’t work does it!?
The key to recovery from fibromyalgia is to create a healing environment and a comprehensive plan for recovery, rather than looking for that single magic cure.
Little steps – for now it may be just about coping and feeling a little better.
Hi have most all these symptoms. This is a great article. Thanks for sharing. I am battling everyday. I know fibromyalgia is real and debilitating at times. My fatigue is genuinely grueling. I have a very supportive family. I feel guilty not being able to care for them like I once did. I found that meditation on Bible scriptures often keeps me in a more positive mindset. Stay strong and keep up the good fight.
Good to see you finding ways of supporting yourself.
Hope you find the recovery interviews inspiring to help you move forward with your recovery.
I was diagnosed over 35 years during that I had me endometriosis my children got me and husband diagnosed by specialists rheumatologist some also had cytomialgia.
Having been diagnosed with Fibromyalgia about 8 years ago, the specialist I saw looked over all the symptoms I have (I have most of the ones listed here), he stated that I most likely had been suffering from it for the past 15 years or more. That’s when I started showing signs of a permanent low grade fever and high white cell count that the doctor couldn’t find a reason for at any time. I kept that high white cell count forever, I’m now 51 and I still run too high. Doc said there were signs but back then they just didn’t know. Now I know my body doesn’t process certain vitamins well and I need more of them to help. And of course the new mix of drugs helps. Along with doing my best for sleep and exercise and eating properly (yeah, I try to sleep…)
But this was a good article, thanks.
Sadly your experience is quite common. When you listen to the fibromyalgia recovery stories, you hear how so many people have that experience of not being diagnosed for years, sometimes even decades.
I’ve had fybro since at least 1988 but no doctor diagnosed me between then til 2015 when I could barely hold my steering wheel driving home from work. Then I found adding potassium and magnesium to my duet helped. Now I am going plant based and removing my favorite foods like cheese and spur dough bread from my diet but at least I feel a ton better. My only question for you is, have they found a connection with diverticulitis and fybro? All my other symptoms are definitely on your list, explains the wanting to die from my period every month. Only the diverticulitis is questionable. Please let me know your thoughts on this item. Thank you.
Hi Bev,
The right diet for fibromyalgia is certainly important, but it’s only one step to a comprehensive recovery approach.
Often people think they have all these different illnesses/diseases, when in fact its actually just another part of fibromyalgia, or perhaps more accurately, in effect triggered by fibromyalgia. So I am talking about things like endometriosis, hypothyroidism and so on. So I appreciate your question!
Whilst in the majority of cases my answer to this type of question is yes, it’s connected… in this case I have to say I’m not so sure. I don’t really understand the driving mechanism leading to diverticulitis, but from what I have read, I think it may be separate pathogenesis.
Does anyone feel like you have sunburn on your face and arms?
Out of the gazillion things on fibromyalgia, I just happened to click on this particular video. I was first told I had it when I was 18, and that was in 1979. The doctor just told me that it was muscle pain. EVERY SINGLE DOCTOR I’ve seen since has told me I had this for whatever reason I went there at the time. Until just now, my last doctor, who also told me I had it, also wanted me checked or Relapsing/Remitting MS, which I haven’t done due to the price of seeing a Neurologist. I’m going to try to convince my doctor that I’m NOT crazy, I DO NOT need the psychiatrist they keep saying I need and give me a better look over and diagnosis. Thank YOU so very much for this video. You may contact me, use my comment whatever you need. This video, I believe, is a true Godsend!!
It’s so frustrating isn’t it.
Understanding how chronic pain in fibromyalgia works is key to reducing and resolving it, and because it is neurological in nature, psychological techniques as well as physical strategies can help. But it’s really important to realise that doesn’t mean it isn’t real, that it’s psychological or that people are crazy.
Sometimes when people say stay like that, it’s just about enough to drive us crazy, right!? ?
Hi, my name is Jordan & i was diagnosed with FMS when i was 40. I’m 45 now & what a rough 5 years. I’m a Master Plumber. I can’t work anymore & had to sell my home. My wife left me & i moved back in with my patents. Talk about fighting some demons for the last almost 6 years. I’ve had 95% of the symptoms that were listed. I’ve had rashes on my elbows & arms & legs. I also started getting like a psoriasis on my scalp. Anyone else deal with that…? I got it on my cheeks a few times also. Definitely is no fun. I have 2 sons & i feel quilty sometimes because I’d like to do more with my 11 year old. But somedays are just unbelievable…! Well just wanted to add my story a little & let any of the guys with it that they’re not alone. Hope everyone has more good days than bad.
It’s so rough with Fibromyalgia isn’t it!
If that isn’t bad enough, people often even believe or realise that fibromyalgia affects men also!
Little steps Jordan – hope the fibro recovery stories uplift you! (check out Peter’s story, nice to hear a man’s perspective!)
This is such a wonderful article. I have show it to family to help them get some idea of what I’m going through. I think if I were to add anything it would be a more detailed description of how the pain feels at different levels. I describe mine as green, yellow and red days and then with in that there are levels 1-5. Green being I can manage the pain and do some things to Red meaning my pain is severe and I can’t do anything at all. Need help to provide daily needs.
It’s really frustrating with ‘invisible illness‘ when nobody can see your suffering isn’t it!?
Hope the positive stories of recovery from fibromyalgia support you.
Just a question, the last 3-4 days when I eat and swallow it is like glass in my throat and very painful. I had this once before months ago. I do have a bone spur in my neck, though swallowing in it’s self is not the issue. This seems to be just on right side and also my tongue on right side is sore. the reason I am wondering if it could be my fibro is the right side of face, eye and jaw hurt. the dentist told me the jaw ache is from the fibro.
thanks for listening
Hello!
I’m sixteen and the doctors have been telling me that I’ve simply been suffering from “growing pains” for the last 6 years. I’ve been pretty certain that I have fibromyalgia for the last 2 years but going through the list of symptoms and watching the videos here has really helped me realize that I’m not crazy and that there are others who are going through what I am. So I really really wanted to say thank you.
Also I’ve recently been struggling to stay awake during the day. I’ll be fine one second and the next I’ll be falling asleep. Due to this I keep finding myself falling asleep on the ground simply because I get too tired to move. Is there any way I can maybe control my fatigue??
Hi Jenny
As a young person it’s probably even more confusing – so you’re doing well to balance your own opinions against others’.
In my experience it is not about ‘controlling’ fatigue, but rather about recovering from the syndrome as a whole. Have you listened to any of the ME/CFS/Fibromyalgia/POTS recovery stories?
I have a lot/most of these symptoms, how do you get diagnosed?
You ask your doctor if a diagnosis is appropriate.
Along with my Fibromyalgia,’ I also have CFS/ME and EBV so I am chronically fatigued regardless of the amount of sleep I get. Thank you for this article. I wish more family members would read this information as i have been battling all of the above for 14 years plus low back pain even after surgery & they still don’t understand how debilitating it can be on our “bad pain” days.
I was diagnosed with Lopus first had the butterfly rash on face and a lot of the symptoms of fibromyalgia through blood test I was then diagnosed with RA then came fibromyalgia next came Diabetes’s, IBS, a new symptom which I did not see is my fingernails are actually peeling and the skin around them.they are very painful I use vicks vapor rub on my hands and wear gloves this helps the best and help the pain
I had severe intercostal inflammation for about 2 years when this started about 15 years ago, which has started again ? but it’s milder at least this time. I have never had anyone say don’t watch video’s etc of those with severe Fibro as it could be alarming( good to know) AND it’s not necessarily a disease that just gets worse (mine has slowly settled as I get further from a devastating divorce)
I have had fibromyalgia for years now and it seems to have got so much worse the past two or three years now. I am turning 56 soon and suffer with chronic migraines, osteoporosis, osteoarthritis and terrible anxiety that I am going to say is coming from my fibromyalgia. I have sleep problems, body aches, neck pain, blurred vision, chronic fatigue, numbness/pain in hands, some memory loss, and so frustrating, it’s as though I can no longer have an intelligent, adult conversation anymore! The words are usually there, but they just won’t come out of my mouth. I am embarrassed! I feel my pain has aged me 10 years in the past two or three years. The latest is lately, I have severe pain in lower legs and feet. It’s similar to a neuropathy type pain. And no, I am not diabetic. I can hardly walk, stand or sit! My feet/heels cannot be touching anything. Last of all, a stomach ulcer I was diagnosed with early 2000’s is acting up again. I just wish my PCP would address these issues more, but does not.
I have fibromyalgia, scleroderma,inestistal lung decease( from the scleroderma).Barrett’s esophagus, gastro phreasitias . Rhanauds , very bad fatigue! Depression and anxiety omg it’s awful ! But just can’t give up .. I know I push my self every single day ? I also just found out a while ago I have severe osteoporosis!
Lately I have been having what seems like shortness of breath when trying to fall asleep, nausea each morning and that what feels like I breathing out fire from my esophagus, plus the symptoms mentioned above. I was doing so much better ( for almost 2 weeks) and now I have this.
Sorry to hear that – get your doctor to check out your symptoms – perhaps you are experiencing reflux also.
Gluten elimination will help with the pain. When u reintroduce the gluten you will feel like u got hit by a bus. Gluten free is the way to go.
I haven’t been officially diagnosed. Although even my Doctor mentioned it.
I think that trying to reach out has received so much hypochondriac responses, that I gave up, as mentioned in your video.
When I was younger I thought a doctor had access to a wealth of information. I thought some symptoms shared and presentation of my body would provide the doctor with what was needed for diagnosis.
THIS IS NOT WHAT WORKS!
I have to do the research. I have to accomplish this through the fibromyalgia pain-fog. Any bodily system out of whack I have to identify and find the medical definitions. I have to use ‘doctor language’ full of medical terms.
One awful incident, not necessarily part of fibromyalgia, was a reaction to the antibiotic, CIPRO. I had one of the most severe reactions. An unusual type. CIPRO can cause tendons to tighten and snap. The worse possible incident is the Achilles tendon breaking apart. I’m extremely grateful for NOT having my reaction that severe.
However, I have to give in to having my left baby toe joint removed. I had to know more of why.
I researched CIPRO on a hunch as my foot pain is unusual as it’s the top of the foot with the tendons involved in the CIPRO tendon tightness. (The tendons were so tight that I couldn’t walk. I was in extreme crying pain. I did go to the ER. Despite sharing about the CIPRO pain, they dismissed it. My record was noted “…pain of unknown origin.” Meanwhile, this was on a weekend. I did contact my doctor. He was perplexed. BUT…he researched it and found the proper treatment to get the tendons relaxed and pain reduced. I had gone past the window of treatment to silent grin & bear it.” I survived. But I didn’t know that this incident can effect the body for years and even a lifetime. CIPRO is BLACK BOXED, meaning it is designated as to ‘use with great caution.’ Choosing a different antibiotic may be necessary. This CIPRO incident is how a fibromyalgia prepared patient presentation is received in much the same way. COVID-19 has a long slow possibly lifetime recovery for some patients. This too has fallen into questioning such a relationship. Hypochondriac and ‘of unknown origin’ is tossed about.
It is HARD WORK to be a patient with severe chronic pain. You have to live it to know it. I sometimes get tired of working it that I quit. I may pick it up again, but I am confused as to why patients have to do this sort of technical research. I thought that if I presented something weird to challenge a doctor, that he would do the researc part of his job.
I often feel pain and tenderness in my scalp along with pain in my eyes and a feeling of thickness or heaviness in my brain. The fatigue I feel makes it hard for me to be joyful and happy. I often just struggle to get through the day. It is not a nice way to go through life.
My son has many of the symptoms that you describe. Problem is getting a diagnosis. He has been to a rheumatologist without any feed back. Would seeking a neurologist and / or pain specialist help? I suggested for him to keep a daily dairy of new and/or old areas of pain and symptoms as they occur. He is on Medicaid as he is type 1 diabetic.
It can be a bit of a merry-go-round, but it’s important to persist until you get some kind of diagnosis.
This is because other illnesses can cause similar symptoms, and of course you want to get appropriate treatments for them.
An extensive list and I have probably experienced 90% of these. The most difficult are, very poor sleep, pain and explosion of pain at night. Then cognitive impairment, very poor urinary frequency and flow and the extensive issues of controlling body temperature. Some days I sweat so much I have to change my clothes 3 times a day. The exhaustion builds up and I then become anxious ?.
On top of this I have a spinal stenosis and one of the real issues is I get constant erections all night, which may or may not be linked to the fibromyalgia and or the stenosis.
I find the NHS to be useless or though I had an excellent GP for many years who was very supportive. I have had fibromyalgia since 2012 but only diagnosed in 2019. I was exceptionally bad in 2013 to 2015 then really ill in 2017/18.
Doing physical work does build up strength and lessens the fibromyalgia symptoms once you have settled into the exercise. Sitting at a PC all day makes things 100% worse.
Does reflexology help ease Fibromyalgia?
Very dry mouth, pain behind my eyes, earpain, pain on the bottom of my footsoles, lots of pain in my hands they very are swolen. Always very hot, lumps under my skin. chronic liver problems. 1 dry eye 1 wet eye.
Pain in hands , like carpal tunnel, I’d drop things out the blue, couldn’t grip, they gave me a steroid injection where the carpal is which has helped in that area massively, but its almost like the pain has just moved, it’s now up the outside edge from wrist to tip of pinky finger, also get ripping sensations in the back of my leg in the hamstring area, felt like the muscle was actually ripping, or a knife being inserted, that eventually went on its own, burning heels, was another until just the other week, it just stopped out the blue, that was painful to walk, and had that varying degrees of pain for about a year or more, I get the common symptoms, sciatica, sorry the word has gone, slight dislocation of the shoulder, sore hips , and yeah can’t retrieve my words , sometimes sentences , that’s been getting worse. I live smack bang next to an electric pylon for 20yr now, my brothers swear it’s what is making me worse. I also have hypermobility Syndrome, so get a lot of pain from that itself. Had that from 14yrs, 52 now, exhaustion is my killer, my 19yr old daughter is showing similar symptoms also has HMS . She has bad eczema, alergic to so much, water intolerance to boot , son 30yrs has crohns and exhibits a lot of fibro symptoms too . I try to do crafts when my hands don’t hurt , but having that enthusiasm to do stuff is just not there much at all , just too drained . I also have a constant nerve pain in my left foot along the side, especially when iam in bed , tinnitus is also a distraction , had a patch on my back the size of your hand thats numb since I was a kid at primary school, I now wonder if that was my fist sign ? Since going threw menopause keeping vitamin levels in my body is my new pain in the butt, we really do all vary , because every person’s nervous system differs in how it presents is my thoughts . Keep fighting the good fight folks
It seems after my life saving emergency surgery for perforated stomach. It’s hard not look at FMS as progressive. I can check off most of the symptoms listed in this article. Find try not let the green eye monster get me depressed of my two siblings who don’t look like have FMS.
I have had Fibro for 10 years. It is getting worse every year. I seldom have a day when I am not in pain. Some days worse than others but few without pain.
Hope you find the fibromyalgia recovery interviews inspiring!
I think I have had this for many years now. I am Diabetic and it seems they blame everything on that. Twenty years,ago I asked my physician about Fibromyalgia and I was told it was a “garbage can” diagnosis!!!
I have multiple auto-immune diseases and I am now thinking that Fibromyalgia is my biggest problem besides the long term diabetes. How do I find a doctor who believes in Fibromyalgia???
Hi Mary,
Well, I don’t think it is a ‘garbage can diagnosis’ – I think that comment comes from not understanding the root cause of the illness and how that creates all the symptoms. Further, because Drs don’t have a silver bullet cure and because recovery happens through mechanisms they are not trained in, many don’t engage with this illness.
I suggest that you check out these short explanation videos to help you understand how you can move forwards.
If that resonates with you, then reading the book may be helpful.
How can we attribute all of the above symptoms to a disease that still has no real diagnosis? People are being told they have fibromyalgia whenever a doctor can’t figure out what’s wrong with them. Unless something has changed there are still varying theories on what fibromyalgia is and what causes it. I am one of the people who calls every ache I get another fibro symptom. Tired of doctors telling me they don’t know what’s wrong with me. Every person I talk to either has been diagnosed with it or knows someone who has. It’s still a mystery is it not?
Well Joan, I am suggesting it is not such a mystery at all.
I suggest that you check out these short explanation videos.
If that resonates with you, then reading the book may be helpful.
Yes I have not been diagnosed yet for fibromyalgia but I do have IBS alopecia when I was younger . Then always going to the dentist for all different things and I don’t know how Because I always had a routine down and then around my 18 I got pregnant and then started my journey of depression and anxiety and then I began to get more cavity and after my 2 baby I got the symptoms of bad migraines and then my teeth began to get worse and always Tonsillitis or bronchitis then past year I began to get a better understanding of what it possibly would be but I am always trying to make it through the pains and just say it was probably not a bad thing to be going to the doctor for…. and I just recently started working trying to get my stuff done and then hopefully get enough money for my teeth fixes and ended up paying 2000 here there so I just got a feeling that I can possibly have a infection because my teeth are bad and during my flare up they just chip and deteriorate even more and i was also diagnosed with tmj in the younger years. Yes I am just trying to get a better idea of how to tell my doctor again Bc I brought it up few times but ever since I’ve been trying to record my symptoms and episodes and then when your partner is trying to get me to do things and then never understand why I am always not feeling well and then trying to get my little one to be attended to while working from home has been really overwhelmed stressful and I noticed that once I get to my anxiety and feeling so stressed it starts to feel like burning inflammation gut is bloated bad I constantly have mucus drainage and then my tonsils are swollen and I am just trying to get my self to get my health up and better bc I don’t feel like I have time to do it unless I’m dying and I am to the point where I am just dizzy black out phase no energy to do anything but I push myself because I feel like I’m not going to be that good mom ..
Dealing with chronic illness and parenting is tough for sure.
Sometimes we simply need to focus on the little things to feel better physically and emotionally – little steps to move us forward.
Hopefully you checked out the recovery interviews and found them uplifting.
Hi, MY name is Marguerite. I am a 74 yr young great grandmother from Southern Mississippi. I was diagnosed with Fibromyalgia approximately 25 years ago by a Rheumatologist. My husband n I live on 2 acres n have 11 beautiful mature oaks. Before my knee replacement 4 years ago; he n I had gardens all over our yard. We loved working from sun up to sun down. As time progressed, the pain would get worse. I had all 18 trigger points positive n still do. Since, that surgery, where he damaged the nerve on the outside of my knee, I started experiencing horrible episodes of a pain in the back of my knee that I can only explain as being struck with a bolt of lightening. I about fell flat on my face one time, and another, I was in the tub n taking my time to get up n out n it struck me. All I could do was lay with my head on the tub edge n cry. Those pains have gone, but the nerve pain I go through now is horrible. In my feet, esp my toes and pad; I even have numbness in the front of both feet. So numb, that I can put that part under scalding hot water, and not feel it. But, when the weather starts to get cloudy n rainn thunderstorms are on the wY, watch out bed. Everything flares up, esp my upper chest, n joints. All I can do is rest. I have pain medication n have worked in the medical field for several years n know what they can do to you. I try to be very careful. When I’m hurting, I go and lay down n try not to take any. If I don’t get leg cramps or restless legs, I can usually do without them. I was flabbergasted when I started reading all of the symptoms and causes of this evil sickness. I have so many of them. I have four children, well, they aren’t children anymore, lol. My eldest, a son, is 55, a daughter 53, a daughter 52, and a son 49. Counting spouses, we have 22 grands and 13 greats. I’m the eldest of 7, still with us. Two of my sisters n my eldest daughter also have Fibro. They suffer a lot also. But, my biggest concern that causes a lot of stress is my youngest daughter, who is 52. She’s an R.N. and has been one for 25 years. Highly intelligent, by the book, and was director of nursing for labor n delivery n womens services. I have more of a time trying to convince her of the pain n why I’m in bed so much. She hardly buys it n explaining it is sometimes hopeless. I love my children will all that I am. I raised them alone until they were old enough to be on their own. We’ve been through a lot together n always there for each other. She n some of the others tell me I need to get up n do things, heck, I don’t feel like doing things, I’m truly, honestly, sincerely, HURTING! You all know what I mean. It breaks my heart. I know she just wants the best for me, but sometimes I’m helpless. We live about 35 miles north of all of my children, n are in the process of selling our home of 30 years. This is truly a hard endeavor. Both my girls tell me I need to get rid of this n that, well, i know that, duh! But, please, I’m still in my right mind n m capable of still making decisions. They make me feel as though, just because I’m 74, that I’m feeble or something. Then there’s one of our arch enemies, STRESS!!! YUCK, I HATE STRESS! I’m a Christian n if it weren’t for Jesus, I would have probably lost it by now. He’s my strength, my fortress, my help in times of STRESS. I love Him so much. Anyway, this stress is taking a tole on me n my husband. He’s 69 and has Systemic Scleraderma n Raynauds Phenomena. An auto immune disease that hardens your arteries, veins, n capillaries n any other internal organ it cares to destroy, no cure. He’s lost 40 old in the past 6 months and we are there for each other. All of this doesn t do him any good either. He’s one of those rare husband’s. When I’m hurting he doesn’t mind one bit taking over n visa versa. Time limit on this disease is around 15 to 18 yrs. He’s had it 22 yrs. God has been so good to us. So, if there is anyone out there with a few tips for this, gracefully aging, great grandmother on how to deal with family members, I would be so grateful if you cd send me some helpful hints. I LOVE MY LIFE AND MY H7SBAND AND OUR FAMILY, but wen we move closer to them in the coming weeks, I want peace, sweet peace that comes from HEAVEN above. If this is a crazy story and doesn’t make sense here n there, we’ll, chalk it up to the Fibro fog or whatever it is that causes you to not be able to talk right or explain things. I never was like this before. I always considered myself able to hold a normal conversation n not trying to say a word n stumble trying to pronounce it. May Almighty God bless each n every one of my followers sufferers n may He reach down and touch your bodies at your worse moment and make it more tolerable. He has for me several times. May the Peaceful God, which surpasses all understanding keep your hearts n minds in Christ Jesus our Lord,
With Greatest Respect,
Margie
It seems like I’ve been in the game for 100 years but it has been 4 almost 5 . But I also deal with a locked left knee with no further surgery due to P. E . In the lungs. And arthritis through out my body . As everyone else fatigue pain every where , tmj , Ibs , rls it seems all of the syndromes just kidding but enough. Going to the bathroom all the time knowing that it’s a symptom but praying it’s not diabetes. But every morning you wake up wishing you don’t have it but the second you place you foot down your endless day starts. The only way it’s a good day if you don’t get a new symptom
How about tingling, burning, itching, numbness sensations throughout the body, but especially in the hands and feet? It’s a sensation often described as “pins and needles”. I have read on numerous other websites that around 25% to 30% of fibromyalgia sufferers experience these symptoms.
I have most of these symptoms mentioned on list and comments. I go to the doctor and get blood work done then told everything looks fine. I feel they think I’m a hypochondriac. So here I am, still not knowing why I feel like I do and don’t know what to do to ease the symptoms.
Hi Aida,
Well, unfortunately that’s quite normal.
It’s important to realise that the symptoms are real.
The key is to let go of these frustrations and instead focus on learning how the illness works and start your recovery journey.
I hope the book and recovery interviews inspire you.
Occasionally my knees swell up like I have water on the knee and it hurts like crazy, and cant walk very well..I have had xrays and they say its not arthritis, its my fibro.I cant turn my neck because of muscle spasms..One doctor said its fibro..tziekes..the newer dr showed arthritis.I feel like I have snakes running up and down my back at night..and now my hips are killing me. I go to the doctor and she says there really isnt anything I can do..so I use heating pads, acetiminophen, and hot showers, and a cane.I wish I knew if I can have both arthritis and fibro, or is it something else. now they call it costeochronditis..I also want to add I have celiac, asthma.
Does anyone know if Fibro has any corolation to EDS?
Is nausea also a symptom. I have been nauseous for about 9 months, had dozens of tests and doctors don’t know what is causing it.
Random quivering, shaking, tremoring of my lips and hands with no apparent reason. Seems to happen when I’m doing tasks like holding something, separating papers, stirring something, while eating ( my son noticed). Keep wondering if symptoms are fibromyalgia or something else. Is there a test yet that can tell if one definitely has fibromyalgia or is it still ruling everything else out.
It’s so nice to hear someone who knows what he’s talking about and not telling me it’s in my head I also have Cronhs Arthritis Diabetes Angina vertigo high blood pressure I am finding it a lot harder now I am in my 60s I can’t fight the way I did my Depression is my lowest point
Acceptance and surrendering can be powerful ways to navigate these difficulties – it doesn’t mean you give up on recovery, just that you accept that this is how it is for now.
Ok All I can say is…..I’m a 50 year Breast Cancer survivor and that was a walk in the park compared to how I’m suffering from fibromyalgia. It is so debilitating. I just went through another physical trauma and it made the fibromyalgia worse. They can put a man on the moon but they can’t cure fibromyalgia. God we need one of your miracles.
Hi I am having difficulty finding doctors that even consider fibromyalgia to be an actual thing and I think I have every single symptom here
Any recommendations ? I have been diagnosed but finding a doctor to help maintain the disease is difficult if not impossible
Well, you may need to work with a different doctor.
The challenge is that there is no cure, but as I describe in the book, supportive treatments can be helpful in an overall recovery plan that also addresses the root mechanism of the illness.
Typically a normal doctor for supervision (to check out new symptoms) along with a naturopath for supportive treatments or working with an integrative doctor is the answer. But make sure that you also work on the other recovery strategies as people detail in the recovery interviews!
It’s refreshing to have so much more info. When I was diagnosed they knew very little.
Glad the site is supporting you. Have you checked out any of the fibromyalgia recovery stories yet?
I just watched a video of fibromyalgia and I know having fibromyalgia is not good thing to have I am in so much pain all the time I can’t seem to get anything to stop the pain
Hi Sharon
Yes it’s frustrating, most of us have similar experiences treating the symptoms. The key is to focus on the root cause of the illness and recover from the illness as a whole, rather then ‘fixing’ the symptoms. Have you watched any of the recovery interviews?
I have suffered from this for many many years, long before they named it. (VERY YOUNG) I’M 70YRS OLD NOW, was called just about everything you could be called too.. Oh well! But this I know that’s it’s so real, but I made myself aware that I had to move on and live with it as best as I could. Sometimes it just knocks me down flat, depression gets to me, that’s the worst part because I want to get up and go, but the pain says NO!
With all the other symptoms my hand and toenails feel as if they are being ripped out ,my ribs feel as if they are in a car crusher,sharp pains in the eyes like a knitting needle being stabbed into them,Boiling water being thrown over my head burning my head and back .The list goes on and on .
Hi
I have hypersensitive skin in winter to the point my skin hurts to touch. My social life diminishes in winter as being in the cold or wind my bones ache, my muscles start burning and twanging. I am heat tolerant and can easily have a shower with just hot water.
I also suffer from hypermobility syndrome and sprain joints easily especially wrists, thumbs, fingers. This only lasts a few hours to 24.
I have numbness and tingling in feet all the way to knees affecting balance sometimes.
I struggle with forgetfulness, and brain fog to the point everything and everyone is just white noise. I get irritated with high pitch sounds/tones.
I feel best when following a keto diet. My energy is great, brain fog diminishes, and pain is controlled. Sugar intensifies pain.
I have tried every pill for fibromyalgia but the only one that alleviates pain is panadeine forte. I have noticed that since fibromyalgia start I metabolise medication differently. A lot just don’t work.
Hi my name Is Mary I suffer from Fibromyalgia.Mt nerves feel like they r stretching so much I also have high blood pressure,migrains ,copd yes I quit a long time ago after I died for a minute ,carpo tunnel pre diebetc,chronic pain,sleep abnia I’m on oxygen 24/7 ,thyroid ,acid refux ,my spine hurt buldge disc I’m just a mess I hurt all over
It’s a hard slog sometimes Mary.
Have you listened to any of the recovery stories?
What do you think of those?
Also beware of over doing it in the physical aspect. And when exercising. I develop casiochondritis in my chest and it is like an Elephant sitting on it. Making it hard to breathe. I have to get a special prescription from the doctor for the Pain & Inflammation
I didn’t see balance problems, constant tripping and falling listed
Being too hot, or very hot weather wipes me out. It. Comes too much of an effort to move,think anything
Also ich habe auch noch das Problem, das Hände und Füße sich anfühlen als wären sie aufgeblasen und sie platzen gleich.
Man sieht aber nicht immer eine Schwellung. Und wenn ist sie nicht so arg. Die Schmerzen aber sind schlimm.
Hallo ik ben bij een dokter om een invalide kaart gegaan gewoon om dicht voor de winkel te kunnen parkeren daar ik in mijn 1 been maar 30 % spierkracht heb hij zei dat ik niet in aanmerking kom erg he
A friend that also suffers from Fibro like myself told me about Moringa. It is an antioxidant, that helps protect cells from damage. Moringa might also help decrease inflammation and reduce pain. I purchase mine through Pura Vida. I still have pain and my normal daily issues but this has made managing my Fibro much better. I hate that this condition can never truly be explained unless you have it to experience it for yourself. Brain fog, fatigue and painful sensitivity to touch are my most annoying issues.
If you try the Moringa, please let me know how it works for you!
Thanks for sharing Jaime.
There are many remedies that people find helpful, although they often don’t work for others.
The key for more relief is recovering from the illness as a whole! Have you watched any of the recovery interviews?
Enough of the symptoms! You are preaching to the choir. I need to know HOW to fix this. Seems 600mg Ibruprophen helps, but am I trading one illness for another by putting a heavy load on my kidneys? I’ve seen Dr.s and given up. No help whatsoever.
Great to hear about your focus on recovery – that is what this website and the book and recovery program are all about.
Here is a good place to start to learn more about recovery from fibromyalgia.
How is this diagnosed? Thru blood tests? I’m headed to Mayo tomorrow and need answers. Any suggestions?
It’s not a simple test – it’s a process of elimination of other disease combined with meeting a set of criteria.