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… Read more »
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… Read more »
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)!!!! ?
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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.… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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,… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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… Read more »
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,… Read more »
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… Read more »
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.