Are You Frustrated?
Frustrated with Fibromyalgia?
Frustrated with Chronic Fatigue Syndrome
Frustrated with Myalgic Encephalomyelitis?
Being frustrated with Fibromyalgia or being frustrated with ME/CFS is a big part of experiencing the illness. Many of us share similar frustrations about Fibro/ME/CFS, including not being understood, feeling stuck and not getting better as well as the impact on our lifestyle and relationships.
But having spoken to numerous people now that have recovered from Fibromyalgia and ME/CFS, I have noticed the powerful opportunity of frustration as I discuss in this video.
Please leave a comment below and share with others to see what they feel!
Here are some social media images for sharing:
Not sure if I should say this or not, but I get really frustrated when people say, just pick up the phone and call a friend – seriously, what friend??? I’m an introvert who has always made friends through work or sport, neither of which I can do any more. I am trying to do a few things that put me in contact with people (eg workshops at my local library), but then I have to deal with how to tell people I have had CFS/FM for over 10 years and despite looking fine, I therefore have limitations on what… Read more »
Hi Sandra, sure, it’s great of you to share your thoughts. I do understand what you mean and you are not alone. That’s why I tried to nudge people into many directions – anything that moves you forward out of Fibromyalgia or ME/CFS. Relationships take a big toll when we have chronic illness, especially with this one. I hope you are getting the insights and inspiration to move forward towards better health.
Best wishes,
Dan
Hello Sandra. I can understand how you feel. If it’s any use to you, I am good friend material and I belong the the ME Group in South Wales. You may email me if you like.
Hi Sandra, I wonder how you are doing now 3 years later. Would love to chat more. Am largely in the same boat, apart from being gay; am nothing now 🙂 hope you are still around x
Thanks Dan for the great v-log! You’re SO right about how each of us has to arrive at the precipice of our own tipping point in our own time. That one “final straw” is often the one to shift the focus toward healing. It doesn’t mean that the next step we take fixes everything. It just means that we’re willing to stop doing what we’ve been doing and try something (and oftentimes many “somethings”) different. Thanks again for the insight. Trusting our own intuition has a lot more power than we think!
Thanks for your thoughts and feedback Sue. 🙂
Thank you for all your hard work and for sharing with us Dan. It is so helpful to get encouragement from someone occasionally. My biggest frustration is trying to do everything right. (Good food, gentle stretching and balanced activities, meditation, positive attitude… ect.) But see no results, or only short term temporary results. But I keep going, because I know it will take time for my body to heal itself. Then I hear my hubby say “he is disappointed that only a few hours of ‘slowly’ walking around, could put me in bed for 2 days.” And my doctor (who… Read more »
Hi Laura I read your comments and am torn between laughter and tears – it’s not really funny, but from the point of view of somebody who understands exactly what you are going through, the cardio suggestion is almost comical. Having said that, of course I explain how exercise impacts our health in CFS Unravelled, but “pushing” is not the answer! I share your hubby’s dissapointment – and you know, I think you should also. It’s dissappointing, the whole illness is dissappointing, but the dissapointment is NOT IN YOU!! FRUSTRATING! Hearing other people’s frustration reminds me of my own when… Read more »
Hi Laura, I know how you feel as my friend has M.E. I had her in my own home for a year and also worked with her in hers before and after that time. She has run out of options: doctors, specialists (if you can find them and pay for them), diet, gentle exercise, relaxation etc. etc. and I have gone through the whole thing with her and came out the other end, depressed and ill for many months. I now work with an M.E. Group and the frustration is still there. I do what I can to assist people… Read more »
Hi Miriam,
It would be great to hear from you off & on.
I can be reached by using userp ‘SpaceGirl63’ at on-line support group http://www.dailystrength,com. – CFS group. &/or Fibromyalgia group. DS is a wonderful support group with many knowledgable loving supportive people.
Thank You for taking your time to help others. You are a God send.
{{{HUGZ}}}. Laura
Just want to say you are a GEM ? of a person. To do this for others is so kind. Cfs is frustrating for all involved. Take care of your health too.
❤?
Hi, Sandra! You’re very brave to bare your soul and any of us, including myself, would be happy to have new friends… Email me or PM me anytime to chat… We all have flaws but we all also have a lot to offer that we don’t even realize… Compassion, empathy, understanding, patience, friendship, the list goes on and on and oddly enough those are the exact traits we need in our friends so value what you have to offer… It may not be physical but it’s way more valuable than that to us fellow sufferers…. There should be no judgments… Read more »
Thanks for being supportive Jackie and making CFS Unravelled a warm friendly place for people with fibromyalgia and ME/CFS!
You are a gem!
🙂
I understand that at a certain point you can push yourself to do things out of frustration or determination to have something go right in your life. What happens when you have pushed yourself from not being able to work to working 6 days a week (56 hours) and are going back to school in a few weeks. I was almost bed ridden for a year, and to be where I am now did not seem like a possibility. I have a small circle of very close friends who are an amazing support system. My frustration stems from my family,… Read more »
Hi Jenn – what a wonderful comment – thank you! A deeper recovery in my experience NEVER comes from PUSHING ourselves – in fact quite the opposite. But it is so frustrating with Fibro/CFS when we want to do more but we can’t because if we do we crash! Sorry to hear about the lack of understanding by the family – your efforts are not just good enough, they may be TOO GOOD. I wonder if others could have achieved what you have given the suffering and illness you are experiencing, and perhaps in that lies your challenge. You might… Read more »
Dan, I see this battle through the eyes on someone who needs to manage chronic pain and chronic fatigue on non-ending basis. I’ve been doing it over 30 years now. I’m also, though, a professional who works with patients with the same issues I have. What you’re saying is the same thing I’ve been teaching for the last ten years at least. Chronic illness, of any kind, often comes with depression, frustration, anger, guilt, broken dreams, resentment, and every other sort of negative thought or emotion. As patients, we become sometimes a wee bit stuck in our own misery, while… Read more »
Hi Khaat,
It doesn’t sound hokey at all! It can just be a challenge for people to achieve this because the illness is so darn miserable. However, once you get a deeper understanding for the pathogenesis of the illness, you will see that this shift you describe is not just helpful, but critical. But of course, positive thinking alone likely won’t get you there. If you consider my video explanation you will hopefully see what I mean.
Thanks for your wonderful contribution.
Hi Dan Thanks for an encouraging video. You’re right about using that frustration, although it’s very difficult at first, because – and certainly for me – you feel so stupid and useless. It’s at that point that you feel that you’ll never see the wood for the trees again. It’s like you’re a thousand piece puzzle that’s fallen to pieces, and the pieces don’t seem to fit any more. It’s really a re-assembling of yourself by getting to know yourself all over again. And the frustrating thing is that you have to take baby steps in order to put the… Read more »
Hi Charlotte — thanks for the great comment — it’s a rough journey at times, but little steps add up as the poem in CFS Unravelled explains so well. I hope you find the video explanation and book helpful to focus your efforts towards recovery and that they stories of how people recover from FMS/CFS are equally helpful!
Best wishes,
Dan
Hi Dan,
This concept is new to me but I understand what you mean. What I’m uncertain about is how people have been ‘cured’ of Fibromyalgia, which I have alongside chronic Arthritis and Diabetes. I have been bedbound for 14 months now and am only 44. I am currently going through ‘Aggressive Physiotherapy’ to straighten my knees/legs, and I’ve deliberately lost 14 stone to help my recovery. I am a determined person who will do what is needed. So, how do I cure my fibromyalgia?
Hi Denise For many people, the Diabetes (if we are talking type 2) is a direct result of Fibromyaliga or Chronic Fatigue Syndrome. I don’t use the word ‘cure’ for many reasons, not least of which that there are virtually no cures for anything (will write a blog on this shortly). My website and book are about helping people recover and you will find that once you understand the explanation I offer and the more indepth explanation in CFS Unravelled, that you need to tailor your strategy for recovery as opposed to be looking for a simple treatment cure! I… Read more »
It’s absolutely maddening when I hear the “professionals” refer to this illness as psychological. If these pros could live just one week in our bodies, this ridiculous hypothesis would be relegated to just a quaint notion of the Dark Ages of medicine. I have lived with CFSME for over 10 yrs of active infection. I have tried numerous doctors, treatments, vitamins, medicines, etc., all to limited or no success. Recently I have turned to very healthy, or “clean” eating which basically calls for no processed foods & lots of fruits & veg. I also determined that for me, exercise at… Read more »
Thanks for your comment Jane – I really agree with what you say and felt the same way myself. Clearly both fibromyalgia and CFS are real and physical and not imagined. To be honest, I get frustrated that we are still having this conversation these days, the evidence of the physical problems is not just clear but overwhelming. There are more physically measurable dysfunctions than you can poke a stick at, it’s just a matter of doing the right tests! However, if you have read CFS Unravelled, you will note that I also speak about a psychological component that feeds… Read more »
I had a rather hard time cnohsiog just one type of physician I would want to work for. So many of them fascinate me, and with me not really going into any medical field other than support, I never gave this any thought in the past. After reading the list, I am more favorable of working for a neonatologist. It is difficult to think about how neonatologist physicians sometimes have the most difficult job in the world, but I can only imagine how amazing it would be to be a part of saving a baby’s life. I had a coworker… Read more »
Just want to say thankyou to Miriam and Jackie for responding to my rant the other day. Sorry for taking so long to respond – I was a tad embarassed and didn’t come back here till today. If you’re still interested in exchanging emails my email address is XXXXXXXXXX.
Great Vlog with some very interesting points raised. I always struggle with the ideas of hope and acceptance, I’m a very positive person so when I mention hope I mean hope of recovery, not hope in general. Is acceptance of your illnesss giving up hope of recovery? The more I accept the illness and adjust my life to same, the more ‘ok’ I become with being ill and try to find a balance, the doubt seeps in that I am not trying hard enough to get better. Is trying to find a baseline of energy to start building on the… Read more »
Hi Siobhan 40.0 – I love it. You sound like you are really on the right track – I think your attitude and emotional intelligence is fantastic. The information overload is a dilemma, and yes, lots of “cures for CFS/ME/Fibro” out there. In terms of hte best way forward, I think you are definitely on the right track, but you need to make sure that you also work on the cause as I explain it directly (check out the video explanation if you haven’t seen it). In CFS Unravelled I give a framework on how to “treat the cause and… Read more »
I too struggle with acceptance, after five years of doing everything to get better – starting with giving up work within a month of hitting the wall and the latest having been sugar, gluten, grain and dairy free for a year, with a Miriad of other approaches in between, you name it I’ve done it or am still doing it – I am beginning to wonder about applying my mindfulness not just to my symptoms but to the very idea of recovery. I have fervently believed that you can’t recover if you don’t believe you will, but every time I… Read more »
Hi Sula Well, I totally appreciate where you are coming from. And you know what, a lot of people did have some luck, especially those that didn’t even understand the dynamics of the illness and more or less stumbled into recovery using helpful strategies that they didn’t even understand WHY they would be helpful. You know, I don’t think we need to hit an absolute low to recover. Yes we see that often, because it gives people a much more serious level of motivation to make changes, but really, we want to aim to be in a better place emotionally… Read more »
Fantastic, Dan! Yes, you hit the nail on the head. I don’t find I have as much frustration now as I had before. I understand this fatigue better now (your book was very helpful), and so I’m learning to go with the flow. I think the exercise program I’ve had since late February has helped to increase my stamina somewhat, as I have had more good days than bad for the past couple of months. I’m enjoying it, and when I do have bad days, I know they will pass eventually. But I still find other people’s attitudes frustrating. Especially… Read more »
That’s great to hear about your progress! “I know they will pass eventually” is what you said above! That is very powerful and I remind people of this all the time. Remember not to push your body, just expand your activity with confidence and ignore any negative feedback your body gives you, this is critical! Thanks for the postiive feedback about CFS Unravelled. Yes, those comments are frustrating, sometimes it would be nice to just be able to let others experience what you have for a couple of weeks. You have to choose people you confide in wisely. Look forward… Read more »
This hit home for me, describes how my life was before I healed with a gluten free diet 2 1/2 years ago, after suffering with fibro and CFS for over 10 years. It is most frustrating, embarassing and worrisome when you’re in so much pain that your life comes to a complete stop, and you can’t keep up with your child, have to stop gardening when you enjoy it immensely, and avoid social functions with friends and family because its too uncomfortable to stand or sit too long, and you find yourself too embarrassed to deal with the looks and… Read more »
Thanks for your comments Pauline.
Yes, it’s hard to get the acknowledgement and understanding at times. Makes life even tougher when you are struggling with poor health.
I hope my explanation and framework for recovery resonate with you and help you move forward.
Hi Dan, Good Video! some refreshing points about dealing with frustration resulting from cfs, fibro, ect. As somebody else mentioned, the pick up the phone and call someone tends to become fruitless after years of fibro, you don’t have friends left! Most have been driven away by our complaints or our own hiding out, not wanting to either go out or communicate while severely under the weather. Once we have begun the process of recovery we find ourselves looking for new friends or at least someone to talk with because the old ones have moved on. Here again the frustration… Read more »
Hi Bob Thanks for your great comment. You know, you really made me think. I have been trying to find topics for people to share my message of hope and getting frustrated at the lack of shares on facebook whilst seeing other pages grow fast. It strikes me that anything positive gets no traction and negatives gets hundreds of shares. But reading your comment has really helped me to remember both the fact taht there are people likek you ready to look for positive message and to focus on them. You have also helped to reconnect with my old frustrations… Read more »
Hello Dan: Great insights! While I do not have Fibro or ME/CFS, as you know, I am a caregiver for my husband, who has CRPS. I am not easily frustrated, thank Goodness, as I also look at “bad” events as opportunities to learn, to make changes, etc. My husband, however, does find it frustrating to see how CRPS has taken away so much from our lives and imposed so many other burdens. His physical limitations prevent us from even going to a movie together as family, let alone travel the way we planned to do. We have, however, created a… Read more »
What frustrates me the most is when I have a flare up, I can be in bed for a week or two straight.
Absolutely frustrating Michelle – and what about the constant fear of another flare up. I remember it all too well! 🙂
Hi Dan, i thought this was an interesting video. I find the frustration one of the hardest things to deal with, especially when I have had a few good days and believe i am at last on the mend, then wake up the next ay and can hardly walk because I am so sore. Sometimes I feel the path I am walking through life just gets thinner and thinner and I am getting squashed in the middle. On the other hand there is still an awful lot one can do along the thinning path and I sometimes find that I… Read more »
Thanks for the feedback Fiona.
Well done for taking action, every little step in the right direction gets you a step closer to your goal.
Remember to seek out your personal trigger and address these also – diet alone will only take you so far.
Best wishes,
Dan
What a great vid u did. I have diffuclties to read your blog because of my concentration level. I ve stopped being frustrated. I started loving my live. Im so sick, than I cant get ouf of bed and need help for all the little things. but I discovered one year ago. I DONT HAVE TO SUFFER. That was a big step! This step saved my relationship with my girlfriend and thats why my girlfriend and our thaugther are still living together as a familiy.
Hi Sebastian, great insight. People sometimes can’t take that on board by simpling having someone say it, you have to experience that realisation. Suffering is distinctly different to experiencing negative things. I wish you all the best.
Dan
I found this video instructive. After 30 years of living with #fibro, I’m honestly at my wit’s end, and find myself *beyond* frustrated. The life that I am living is just bare subsistence — not LIFE; not thriving. *Something* has to change. I do not have the answer at this moment… but despite my “frustration,” there is still a spark of hope, and these videos are speaking to me, even as my head is saying “oh, come on — there’s no hope.” You must understand that after three decades, I’ve been beaten down pretty good, and “hope” seems like a… Read more »
Thanks for your comment Amy – I hope you find that CFS Unravelled continues to uplift you and guide you towards recovery. You might like to listen to stories of long-term Fibromyalgia sufferers that recovered, like Abigails story here.
Dear Daniel…. Thank you for all you are doing and all you are sharing with the world. Besides being extremely intelligent you have a wonderful heart. My daughter and husband are leaving on a yearly family reunion trip which I have had to miss the last 2 years. Having cfs is teaching me so many good lessons….but it still really sucks. Yes, I absolutely get frustrated. I also get really scared sometimes, too. Afraid that I won’t heal. Afraid that I won’t be able to cope. But then I look at your website and see the recovery stories and realize,… Read more »
Hi Cheri…Thanks for your lovely comment. Yes, great lessons, but I think most of us feel we would prefer an easier way to learn them! Most people I have spoken to share your feelings when they were ill. I am glad you are inspired and uplifted and look forward to hearing about your progress. Remember, little steps add up over time! 🙂 xx
Dan, I got your reply via email but can’t find my original comment here. I have been working with the optimal health clinic – you interviewed Alex once – for over a year. That is the last in a long list of help I have sought from dr my hill, to Gupta amygdala retraining and metabolic typing etc etc.I genuinely have been using everything out there and I do understand what is not working in my body. I am not making enough ATP, it is clumping, I have reverse t3, my cortisol is bound and not bio available and I… Read more »
Hi Sula, Well, like I have expalined in my videos, my view is that the primary cause of ME/CFS/Fibromyalgia is ANS dysfunction. You might wonder about what the triggers are, but you have already listed them (the symptoms). That’s the whole point, it’s a vicious cycle. And of course I understand where you are coming from when you say that there are people with ‘the right mindset & the right help who are still not recovering’. It sounds like you think I am saying that if people are still sick with ME/CFS/Fibromyalgia, that it’s just that they are not trying… Read more »
Very helpful. Just shifting into frustration as friend, as catalyst for action keeps hope alive.
Glad it resonated with you – you can hear people going through a similar transformation quite often as they recover – perhaps the best example is Evelyn in the carpark after she saw the specialist.
I think for me frustration is a cue to drop the story and often the patterns of behavior I’m living in, perhaps unconsciously. When the emotional pain becomes unbearable enough you say okay – I’m willing to do what I need to to change this and that includes examining how I’m contributing to creating this situation
It’s strange how we all only start to take action when the pain levels are high enough – don’t you think? I have always found that people need both a push (get away from) and a pull (go towards) force to start creating change momentum!
I have CFS and after almost two years of a debilitating “flare” of symptoms, I chose to accept my condition and not constantly mentally fight against it. I also didn’t let it define me anymore. So my body/brain wasn’t working like it should; so? That wasn’t who I was. After countless hours of research and worry, I came across your book and followed your suggestions and it’s been even more life changing! Having the knowledge about the root cause of CFS-one that makes sense to me- helps me to accept it even more. Acceptance arose out of frustration, but it… Read more »
Thanks for sharing Jennifer
I am glad the book supported you and you finding a new level of self-care.
Hope the free intro videos for ANS REWIRE have also been helpful for you. 🙂
Thank you Dan for this very helpful video. If there is just one that encapsulates everything the long-term M.E/CFS/Fibro sufferer feels it is this one. Occasionally I read comments from others who have recovered and now run their own programmes but they don’t seem to be able to articulate how it feels in the same way. You are a mind reader! I can identify with those who swat up on remedies, seek help from various practitioners and come away with usually conflicting advice. Result-I shall indeed trust my own instinct more,and try not to be in a hurry. I shall… Read more »
Thanks for your comment Christine. I am not a mind reader – it’s just that I spent years being ill, so I’ve been there and done that.
Hi Dan. Don’t know where to ask, so I just write it here… I need help, since 3 month my symptoms get worse – main reason was that I slept not enough for too long. And since 3 month, I got an EXTREME hunger. And it doesn’t go away, I eat up to 10.000 calories a day, and I wake up every night and need to eat to be able to sleep again. Before this, I ate low carb and it helped me a lot only vegetables, some fat from avocado, cottage cheese, nuts but it’s not possible with the… Read more »
It’s good that you are seeing your doctor – always essential to report all symptoms and have them investigated appropriately.
Unfortunately, treating symptoms is a frustrating endeavor with ME/CFS. Success tends to happen when you change your approach to go beyond symptom treatments.
That means that you build a multi-lateral recovery plan with the view of resolving the central mechanism of the illness.
Have you read CFS Unravelled or watched the summary explanation videos?
I read the book, I have no good inet connection so can’t watch the videos. I try many things, I meditate, make yoga, breathing technics, I changed my location, don’t watch TV, only hear “boring” music – that calms me down, have a sleeping routine, try be as positive as possible, take supplements, I had a good diet before, take walk’s, that helped me all a lot. There was a time where I thought I’m short before reaching my old health. . But then I have overdone it and all changed to the worse. At that time I didn’t knew… Read more »
Hi Peter In the book I speak about how these neurological links occur that perpetuate the ANs dysfunction (ie. these adrenaline experiences). So you are doing some good foundation things, like the meditation, and I would encourage you to deepen those. However, it is also about reducing your physical AND mental stress, which there is plenty off when we are sick. This is a key strategy. So NOT ‘overdoing it’ is key also. In ANS REWIRE I help people create an action plan that also includes other brain-training strategies to release excess sympathetic arousal and to stop giving ‘concern’ signals… Read more »
Hi again. Thanks for your answer. Would love to buy your program but sadly I’ve got no pc and fast Internet. :/ Is there any other chance to get those “brain-training” strategies? And I got another question, never read it about that… Sexuality. IT probably sounds strange, don’t know If you know these problems… but my problem is, after the Orgasm, I feel tired, mostly get light headache and get a bad physicAl feeling… without Sexuality I get a little bit more energy, but I get “nervous” or “hot” and are often concentrated on Sexuality, espacially in the Sommer, where… Read more »
Hi Peter
Sorry, ANS REWIRE is only available online.
The experience you describe is very common. Like with most of the symptoms, I am not sure there is a simple ‘fix’.
I encourage people to focus on recovery and not be surrounded by constant illness talk – so people in my program are encouraged to get off lists, leave facebook groups and so on so that they don’t have constant reminders about the illness. ?
I guess having had ME for 23 years I can’t remember what’s it like to be normal! But what frustrates me long-term is that my creative side hasn’t gone – yet ME puts obstacles in the way- mainly the fatigue so I can’t do much creative stuff. But the most recent frustrating thing is – my condition has worsened in recent years, (now also got neuro issues, Fibro and now Menieres too) – I keep saying the wrong words for things or my sentence comes out with words in wrong order!!! I mean – I wanted my mother to pass… Read more »
Very frustrating and disconcerting isn’t it.
Once I didn’t know the name of my own family members! 🙁
You hear this sort of thing often in the recovery interviews. Have you listened to any of them?