Fibromyalgia and ‘flare-ups’
” So, like a forgotten fire, a childhood can always flare 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.
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.
August 17th, 2008 at 6:34 am
Dear Barbara,
Thank you for sharing, and I must say - what timing. Yesterday I put myself on a “timeout.” I call a “timeout” when I experience a flare, and experience one I did. My husband, sweet caring man he is (I am VERY lucky) reminded me that the flare-ups don’t last forever, and that I had been doing so well lately. He is right, of course, but it is sometimes hard to see that through my exhaustion, discomfort, etc. During a flare, I am vulnerable to black thoughts and questions that manage to sneak into my head; and, as you pointed out, the speculation that something else might be terribly wrong.
I am feeling a bit better today and have been able to go out for a walk. Tempting at times, but becoming a full-time hermit is not an option! I hope that you are also feeling better and that your pain and other discomforts have subsided.
best wishes,
Kristy
August 17th, 2008 at 9:10 am
Oh Kristy: Thank you for your comment (I needed it!) as when I wrote this blog yesterday and the day before I was in such pain and had terrible nights. It was raining day and night, so no doubt that contributed to the episode. To-day after a difficult night I am more hopeful. It is finally sunny after weeks of damp weather and although the flare-up has not entirely subsided(this is a bad one) I can see through the maze! I too have a sweet, caring husband and am sooooo lucky! They suffer too, those wonderful caregivers!
Best wishes, Barbara
August 17th, 2008 at 10:08 am
Oh, good, I am glad your flare-up seems to be subsiding (at least a more manageable roar?) Yes, it is hard for our caregivers - especially when the “normal” means of offering a bit of comfort is out like a touch or hug. And, sometimes I get so grumpy….ack!
smiles to you, Kristy
August 17th, 2008 at 10:21 am
Grumpy is the right word. Yesterday I could not utter a civil word. Then comes the guilt!
You’d think after all these years I would recognize the pattern and adjust to it calmly, but nope. I keep repeating the same cycle! I like your phrase “time out”. I think I will steal it and keep it as my own:-)
August 17th, 2008 at 10:29 am
ha! that’s fair - I got “hermit” from you!
August 19th, 2008 at 4:10 am
re: flare-ups - why do I feel guilty? why can’t I do more? Am I at fault?
Flare-ups are. They happen. I am going to continue living my life (not become that Hermit, which I am sure would have its own stresses.) WE are not to blame.
sorry, just venting a bit, thank you. I feel frustrated that I can’t will this flare to go away…
August 28th, 2008 at 10:26 am
Just a quick question, has anybody tried brain state conditioning as a treatment for Fibromyalgia?
August 28th, 2008 at 11:46 am
Thanks for your query Valerie! This is an amazing coincidence as just yesterday I read from Annals of Medicine an article by Atul Gawande in The New Yorker called: The itch: Reporting & Essays. http://www.newyorker.com The author reports on a new theory about brains and bodies. While it is heavy plodding through it does coincide somewhat with David Butler and Lorimer Mosley’s theories as well…what they refer to as motor imagery. Diane Jacobs describes her method of manual therapy as ‘dermoneuromodulation’ which is also in line with your ‘brain state conditioning’.
It was my physiotherapist, Nick Matheson who has researched this approach and these experts and we are together going to explore it in conjunction with my Stress Eraser apparatus! I will keep you informed as to results. However, I suspect it will not be a quick fix. I can’t erase decades long brain patterns quickly but am willing to try!
September 5th, 2008 at 2:23 am
Dr, Keddy, Thank you. I discovered your blog while searching for articles that I might be able to link to on my own blog.
I used your article at dalnews.dal.ca http://dalnews.dal.ca/2008/05/12/fibromyalgia.html on my blog associated with “The Invisible Disease”.
I look forward to reading more of your articles.
Kimberly
September 6th, 2008 at 7:45 am
Thank You Kimberly! Having another flare up right now so writing is slower than I would hope, but will attempt to write an article this week-end. Stay tuned!
Best wishes,
Barbara
November 13th, 2008 at 2:04 am
Hi, Dr. Keddy.
I’ve just found your blog and it’s certainly going to be an interesting read for me. Last year, in December, I started suffering unexplained pain and fatigue. Over the course of 10 long months I was pushed from specialist to specialist, had what felt like gallons of blood taken for tests, and was told that I was just tired because I was depressed. Finally I ended up yelling at my GP that the only reason I was depressed was because I was in so much pain and constantly exhausted. It’s hard to stay upbeat when you can’t do anything you used to do.
I’m 18, and I’ve yet to meet anyone else my age with Fibro. I know many women who are middle aged or older who have it, but I feel completely alone in my age group. Unfortunately the friends I do have don’t quite understand that I CAN’T do the things I used to do, and if they want to see me they have to come to me, because I simply cannot get to them.
I have no idea how to best go about taking care of myself, I’ve taken enough pills in the last year that I’m going to start rattling when I walk! My doctor is no help, I just can’t seem to get any information for how to go about my life now. People tell me to pace myself, but that’s easier said than done. Some days I can go out for 3 hours and come home fine, other days within 10 minutes I’m in agony or exhausted. As it is I only leave the house if my mother is with me, and even then I only go out one day a week, if that.
Thank you for this blog. I intend to order a copy of your book ASAP and hopefully it will help me better understand this invisible disease.
Victoria.
November 13th, 2008 at 8:30 am
Dear Victoria:
Your comments are so very heartbreaking as I don’t often receive many from teenagers. This is an area that has been badly neglected and many health care professionals don’t believe there is anything wrong with people your age who have fibro symptoms. If you are young you are expected to be healthy. Looking back over my life I believe I had fibro as a child but then the word did not even exist!
How to take care of yourself is not easy, I understand that completely. Yesterday I felt rather good and overdid it and by night time I was flaring. To-day I must be very restful and kind to myself. It’s a vicious cycle. If I haven’t learned at my age I expect it is much more difficult at your age. Pacing is the most frustrating process. Living with fibro requires patience, knowing it is a slower life style than those of your own age, but most of all learning not to be angry with yourself on bad days. An understanding counsellor would be helpful or someone you could talk to who could help you with stress management. Have you tried a meditation class? Light exercise? All of those suggestions have helped me in the past, both to understand what brings on a flare up and to find ways to reduce the amount of stress of living with pain and fatigue (and ultimately find some degree of peace). Learning more about the nervous system and how pain is triggered in the brain is very helpful too. Pain management is key for fibromyalgia people.
I do wish you weren’t taking so many pills as most do not help. My thoughts are with you during these challenging times. Also do not despair! As more information becomes available there is hope! You have to become expert of your own body.
Barbara
December 2nd, 2008 at 3:58 pm
Hi Barbara,
I just found your website after looking for more information on Fibromyalgia. I am 22 years old and got diagnosed with FM in July of this year. I went in thinking that I maybe had arthritis because my hands hurt so bad i couldnt even close my fists. I have always known that I am not a healthy person (I have had unexplainable pain since I was about 16 after getting Bacterial Meningitis, basically the doctors told me that I was lying because they couldnt figure it out). I am actually in my 2nd episode right now and even though its not as bad as the 1st, its still hard to explain to anyone. My boyfriend tries to help me as much as possible but there really isnt anything anyone can do for it.
I am currently taking Baclofen and Robaxin for severe muscle spasms (i even get them in my bladder! talk about seriously painful and disturbing) and Doxepin for sleep. The doxepin isnt working anymore and i have no clue if the spasm reducers are really working or not. I get migranes at least once a week and i feel every day like the crappy achy feeling when you have the flu. Nothing seems to help that.
My doctor is awesome and she recently discovered that i probably have RLS along with my LONG list of other symptoms which include: sleep problems, GERD, Asthma, headaches, severe tender points, irritable bladder, bowel problems, etc.
I do yoga which seems to help me sleep and i either take a hot hot bath or go in the spa nightly before i go to sleep to help me relax enough. I truely believe that there is a problem with the brain because it seems like mine is so constantly active, thats why i cant sleep right. I will fall asleep and wake up feeling like i never slept. then on the weekends i will sleep like 12 or more hours. OR i can even have nights where i cant fall asleep for anything. I have tried the whole diet thing and it doesnt seem to work either, the only thing i SERIOUSLY suggest staying away from is Alcohol. I know i can tell the difference between when i drink and when i dont. its not worth it anymore.
Victoria,
I know the boat you are in, I’m in it too. No one really understands what you are going through except those who have it. I think it can be worse when you are younger because it makes periods HORRIBLE and i am not looking forward to pregnancy only because of the pain. Hang in there. If you want, we can be like each others support. via email if you want. It would be nice to have someone to talk to that understands instead of feeling like i am just complaining all the time.
just remember, the first step is acceptance. Once you have accepted it everything else becomes a little easier. You will have flare ups and days that are much worse than others, but it does become liveable. At least if you accept it and know that you will have issues with it then you can not be in fear of it. Fear only makes it worse. Just remember, it is what it is and move on from there.
Linzie
December 2nd, 2008 at 5:30 pm
It is bitter/sweet hearing from young women like yourself. I am happy if the blogs, book and comments are helpful but sad that there are so many young people suffering so badly.
Like you I believe I developed FM at a younger age and of course no one even knew the word for it. I often felt like I should not be complaining so much and yet it was difficult to keep up.
Linzie, the phrase “it is what it is” feels so appropriate. I feel like writing a blog with just that title….hmmmm!
Thank you for your story and encouragement to Victoria. Yoga, meditation and hot baths to calm our over stimulated minds …. key tips for us all!
Barbara
December 8th, 2008 at 10:32 pm
Hello Barbara,
About Flare-ups. I have had this condition for about 10 years but have only recently been diagnosed. I have noticed a pattern in my flare-ups recently. Every time my periods are about to start, it gets pretty bad. Just about all my symptoms come at once and extreme fatigue is about the worst. The pain and the fatigue last about a week. A week where it’s pretty intense. Of course low energy and aches and pains are always with me but it shifts, a little bit of this and that over the month with being tired all the time. I have noticed for a long time that I would pretty much be out of it for a week or so a month, but only recently have I realized it occurs just when my periods are about to start.
Has there been any occurence about this somewhere? In all the literature I have read since being diagnosed I have not seen any mention of this.
Thank you for this blog, it has helped me realise I am definitely not alone. This is so misunderstood by so many. I am a single mom in my 30s with three kids. I work full time. Don’t really have a choice even though there are so many mornings that I wonder if I will make it through the day.
I used to be a very active person. Fit. I trained to be a police officer and was in a lot of sports. I grieve my lost abilities. Most people around me think I just got lazy. My home is not what is used to be. I hate the brain fog, losing my words, havng difficulties making connections. People call me absent minded. KNowing that a succesful person like yourself has also had to deal with becoming someone new, someone who could amost lift mountains to someone who has trouble lifting an ant hill on a bad day helps me to understand there are really others out there like me.
Thanks
December 9th, 2008 at 8:32 pm
Oh Vicki: It seems as though flare ups affect us all so badly as they keep us on edge. I do write about menopause in my book but not about menstrual cycles. However, I do firmly believe that anything ‘new’ that happens to our bodies, like cycles, birth,menopause all exacerbate our flare-ups. It seems like stability and calmness are our strongest allies, yet life is not like that. Change is part of daily life! I do write about some research that shows that as we age fibro seems less intense but personally I haven’t experienced that. At any rate you are young and you want support for what you are living through NOW! There are thousands of women like you out there and you are definitely not alone. Sometimes though when things seem bleak it is hard to remember that. I wish you the very best! Barbara