Fibromyalgia and ‘flare-ups’

” So, like a forgotten fire, a childhood can always fla14739747re up again within us”, Gaston Bachelard

A flare-up, a word for an acute attack of fibromyalgia, can be very alarming if it seems to come out of the air without warning. Even after years of living with fibromyalgia I can become overwhelmed with anxiety about an episode that I can’t account for. Sometimes the flare-up is in a localized area of my body, for example, this year it is in my hip, while last year it was in my foot. Other times it is everywhere; my nervous system is on fire and pain and fatigue runs rampant throughout. When it happens I go through all the scenerios of the past few days and wonder what precipitated this new, intense attack. Elaine Scarry writes that “Physical pain has no voice, but when at last finds a voice, it begins to tell a story…” (p.3). This is my story:

I look back at my childhood and try to remember what it was that laid the foundation for my sensitive body’s struggle with this affliction. I remember the horrors of childhood in the Catholic school where the nuns terrified me and I would hyperventilate at night, thinking I would die and go to hell. I think about how difficult it was growing up in a big city with the polio scare surrounding us. I remind myself that even though I was an anxious child with a stern, angry father and a passive mother, I no longer have that kind of trauma in my present home life. I try hard to keep my life manageable, although not too restrictive. Then, I remember the more important and positive thing about flare-ups: they don’t last forever! They eventually subside and fade into the chronic, less debilitating fibromyalgia I have lived with for decades, until the next one.

The most frightening thing about a severe attack is wondering if this is an unusual episode that is unrelated to fibromyalgia. Pain that brings about loud gasps, moans and outward signs of distress can be frightening to others, but even more so to myself. Is this fibromyalgia or something else I should be attending to, I wonder? If I suspect it is the same demon, I ask myself: what happened in the last few days to bring this on? It becomes easy to blame myself for excitement, over eating, or pushing myself too hard. But, if it is beyond my control, as in a weather change, then I relax somewhat and wait for better weather conditions.

Living with fibromyalgia is a constant up and down handling of life events. Some days are not so painful or filled with fatigue while other days require almost a withdrawal from life for awhile. It requires courage to pick myself up and start over again, knowing I am often spitting against the wind. The old childhood tragedies help form this personality of mine and I can’t go back and do it over again. Flare-ups come and go. Life goes on and spit happens. As my sister says: “Grow where you’re planted”. All things considered, there are joys to be savoured, especially when the flare-up ends for awhile.

75 Responses to “Fibromyalgia and ‘flare-ups’”

  1. Dear Robin: Thank you so very much for that lengthy comment which I know will be helpful to others. Feeling alone, deserted by friends, a spouse who cannot understand, unable to attend social functions…all of these plague so many of us. I did deal with some of the issues regarding long term disability in my book. It sounds like you have yours attended to quickly which is a good thing! Please keep in touch and once again thank you for being so candid.
    Regards,
    Barbara

  2. Joan Benford says:

    Thank you for this posting. I writing this while experiencing a flare-up at work. I found this site while trying to find something that will help me deal with the widespread nerve tingle and throbbing, but the anxiety is the worst. It came on this time very sudden and with intensity that I have not experience before. I can’t afford to leave for the day, so I find myself pacing my cubicle and waving my arms trying to shake-off the tingling. The anxiety has passed, but now I am exhausted. Seeing this post on flare-ups is a god-send.

    Than you,
    Joan

  3. Dear Joan: You are not alone. This aggravating condition afflicts millions of us and for me often it is the anxiety turned into unexplained panic that can leave me devastated for days. Are you a highly sensitive person? Please read my book and many blogs on this. Daily mindfulness meditation really helps but it must be on-going and it takes awhile to ‘change your brain’. Remember: you won’t die from this and it isn’t a disease, but a dis-ease!
    Best wishes,
    Barbara

  4. Kelsie G. says:

    My mother sent me a link to this post this morning. As I’m getting ready for yet another drs appt, I recently had what I thought was a flare up but today is day 8 of said flair up. I have switched to a rheumatologist who took a ton of blood ( enough to make me pass out on 2 seperate occasions. I have been wondering this entire time if this flare up is not something more serious. I have slept for 8 days straight only waking to be forced to eat. The pain in my back and legs is beyond what any human should be able to tolerate. My flare ups have never been this bad…. I guess my question is have you or anyone else experienced this?

  5. Dear Kelsie: No on on this site can tell ou if what you are experiencing is a flare up of fibromyalgia or something more serious. You would need a doctor’s assessment of this. However, I can tell you that a flare up of fibromyalgia can last for a long time, particularly if you are lying in bed and not able to get up. If it is fibromyalgia lying in bed is the worst thing you can do. It is imperative that you move and not become even more stiff. If it seems impossible to do and you have been told that it is a fibro attack then gentle movement, relaxation techniques, proper nutrition are all fundamental to recovery from the flareup.
    You are not alone and there is hope but if it is fibro know hat it isn’t life threatening and you can keep moving in spite of the pain. Best wishes,
    Barbara

  6. Tracey Lee says:

    I have been in what my doctor calls an “fibromyalgia episode” for over two years now. I have severe difficulty getting out of bed, however, I HAVE TO. My ex-husband left me 4 months into trying medications, heck anything to be myself again, after 22 years of marriage. He left me with the responsibility of 5 animals which makes me get up. The only way I have survived these past 2 years is my symptoms are being treated so I can function because I HAVE TO. I have not gone out, I do not drink, I have zero social life, I have nothing left. I could not even accept that I had fibromyalgia, my doctor of 8 years diagnosed me, I then went to a rheumatologist who diagnosed me, still not good enough, I went to another doctor and she confirmed the diagnosis. There is no way I have this illness has been my mind frame and has been the worst part of this, accepting and trying to live. I had surgery that went wrong on my left wrist, I am unable to use my hands most all the time. I am 48 years old and have no job, no means and have days I am unable to move to even drink a glass of soda sitting right next to me. I am down to 78 pounds. I feel I have lost this fight because I was diagnosed with ADHD as well. So mentally and physically I am useless, what am I to do with my life?

  7. Dear Tracey: I am so sorry that life is very sad for you right now. Obviously you need someone who can help you turn things around. I am not qualified to give you advice regarding medications, ADHD and regaining your strength. Do you have other family who can help you find the professionals who could work with you as a team? I am so very sad to read your story, but you are NOT useless as you say and with the right kind of help you can turn things around. I wish you the very best and hope you will keep in touch, Regards, Barbara

  8. JUDY KNOPPEL says:

    i found out 2 days ago i have fibromylagia. i already take rx for anxiety and the cymbalta gave me a horrible reaction.i felt like i got a shot in my arm with speed. i couldnt close my eyes,sleep and was up walking around all night long. i had this horrible feeling inside me …like i was gonna take off.not going to take it again.
    my concern is how will i proceed as i get older. i am 72 now and there are days i cant even roll out of bed. and the pain and no enerrgy level is horrible. i’m taking oxy 5/325, only 1 a day and it helps some what. but am i going to need a wheel chair later on????????? frustrating cause i just had both kneess replaced so i could dance again………….not. i am single with 2 cats and live in a senior apt bldg.so keeping up with house work isnt too bad. thanks for your help. :?)

  9. Dear Judy: You most certainly are not a candidate for a wheelchair if you continue to move, exercise as much as possible and not become immobile. Just because you are 72 does not mean that a diagnosis of fibromyalgia will make an invalid of you. I understand the desire to take medications for this dis-ease, but if they are causing too many side effects it is much better for you to exercise, avoid certain foods that overstimulate the nervous system, learn some relaxation techniques, preferably Mindfulness Meditation and rest when over tired. Remember: fibromyalgia is a hyper-aroused nervous system and anything you can do to quiet it will be beneficial…move, do not avoid mild to moderate exercise! Very best wishes, Barbara

  10. Michelle Crosby says:

    THis is the worse flare up I have ever had in my life!!!!! I was screaming today in agony!!!!! I think I scared my friend who is an RN and never saw anyone in this kind of pain!!! And yes, this is the worse it has ever been!!!!

  11. Flare ups are not forever so try to keep up your spirits. Meditate, take a warm bath, do some light exercises. Do not panic!
    Barbara

  12. Amyden says:

    Cant say enough about nutrtion. Gluten and dairy free. Whole foods. Yoga. Acup cture. Moving. Staying active. Staying positive. Thought i was dying of cancer. Happy rather to live with fibro.

  13. Sonjia Ferguson says:

    I have recently been diagnosed FM when I saw a rheumatologist for OA. I have pain everywhere and it overlaps before I can catch my breath. I’m a 57 yr old female and my heart goes out to all of you who have brrn suffering for many years. I hope research can find us a cure or treatment to heal in my lifetimr.

  14. Rachel says:

    I hurt! All over, again, today, but this time seems to be worse…..but wait don’t I say that every time I have a flare. I can relate to the traveling pains and symptoms. Sometimes just achy all over, other times headache, stomach distress, cold, fatigue, low grade fever…I never know what I am going to get. What I do know is that once it hits it takes a week or longer to pass. I too struggle with concern over symptoms being something far worse and ignoring them thinking this too will pass. I have seen so many doctors and been poked, x-rayed, radiated it is scary and to know avail they find nothing. The flare-ups are more often and more severe now. I am desperate for answers and don’t feel satisfied with it being fibromyalgia. How can something hurt so much and take control of your life. Thank you for this post. It is some comfort to know it is not only me, but saddens me that others go through this horrible disease.

  15. Dear Rachel: it isn’t a disease but a dis-ease of the central nervous system. This requires less medications and a disciplined approach to strategies to soothe the nervous system. Not easy! I struggle with this daily. My thoughts are with you!
    best wishes,
    Barbara

  16. Dear Sonjia: it is likely that there won’t be a cure but will depend upon us to take control of our own bodies by calming our nervous systems. Not an easy task; it is my challenge too!
    Kind regards,
    Barbara

  17. Joanne says:

    so glad to read these comments. i too feel like this has to be something else. The pain of a flare up can not be described. I can hardly get put of bed and the burning tingling is driving me crazy! Does anyone get blurry vision during these times? I feel like there are tight rubber bands on me causing the tingling pain. at the doc yesterday still thinking I have a life threatening disease. Guess I have to accept this more and find the support of a group like this Thank you

  18. Dear Joanne: The burning, searing, shock-like, tingling, excruciating, dull, aching pains are part and parcel of this demon we are all struggling with throughout this process of living with fibro. I have been in a flare up for months now combined with a hip that may require a replacement. I often don’t know where he pain in the buttocks/thigh/ leg is actually originating from. This isn’t easy so keep up your spirits by knowing you aren’t alone!
    Best wishes,
    Barbara

  19. Amy says:

    To all of you attempting to cope with this mystery illness, I have to say that the saving grace in all of this was my personal path toward wellness and illness driven interest in nutrition. once I returned back to the basics of what all other mammals exist on, I was able to find me again. Initially the joint pain that had me in tears when getting up in morning and from couch or sitting rectified when I cut out dairy products. Then, the headaches and random deep disabling pain that put me in tears and had me crawling across the floor, lifted when I restricted wheat, but also any high glycemic foods like sugar. I woul dbe up late making a cake for one of my 5 children and awake then there would be eye pain, head pain, falling to the floor sometimes, and odd varying nerve and pain responses that I did not understand. Licking my fingers and spoons etc after all the sugars and flour and fresh whipped cream. Once I made the connections my life change tremendously. And then I also realized how sensative I am to heat and stress – which was never the case. I believe its nerve damage over the years. I had a flare up months ago that reminded me of the stress, staying up late, etc and how I needed to truly watch my self care. But, on the positive, it drove me deeper and motivated me to get into raw foods and even minimal meats now as I see how that can tired me as my digestive tract digests the food. I cannot say enough about the power of the body to heal and recover when given the right ingredients :) Acupuncture has been an added plus and recently returned to yoga. Feeling like myself again and more and more motivated to help others with chronic pain. To add, like with many of you I am sure, My doctors could never tell me what was going on after labs continued to be “with normal range” and my pain and symptoms were not ‘fitting’ and forever changing making it hard to describe. I am so grateful I have found the answers from listening to my body.. good luck to you all.

  20. Dear Amy: Thanks for the comments about how diet has helped with flare ups. Eating appropriately for one’s own individual body responses to certain foods is definitely a challenge. Yoga, tai-chi and chi-gong are all wonderful movements which I heartily endorse. I hope this respite from a flare up lasts for a long time and you continue to improve! Best wishes, Barbara

  21. Bonnie says:

    Hi Barbara, thanks so much for the positive inspiration and the sensible advice you offer in the feedback you provide. Living with this dis-ease can be very frustrating and lonely at times. I was feeling so disheartened when I started surfing for sites to help me cope with my current flare-up. But my courage has been restored by reading all the posts.
    The only people who can truly understand what we are experiencing are fellow suffers. Its wonderful that we can share and draw strength from each others experiences. May God bless you all and give you the courage and strength to endure the bad days and to appreciate His grace on the good days.

  22. Thank you Bonnie. you are right- good days and bad days- sometimes good hours and not so good hours! I hope that the many, many blogs and comments on this site over several years have helped in some way.
    Best wishes,
    Barbara

  23. rose says:

    my doctor let me know that I have fibermyalgia 3 years ago, but never really had a flare up. but 2 days I thought I was going crazy it started with I did not seem to br normal I was mentally out of it, I thought I was losing my mind I heard someone called it fober fog. and my body is in such pain, right now I can,t handle it….rose

  24. I am so sad that we all have to suffer so much. Thinking good thoughts for you, best wishes, barbara

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