Fibromyalgia – A Question on Flares   7 comments

I’d be really grateful for any feedback/comments on this:

I wonder how many fibromyalgia sufferers deliberately do things that cause symptoms to flare.

For example, I occasionally have a deep tissue massage. It hurts like hell and I feel so unwell afterwards, I have to go to bed. The next day I am in a lot of pain.  So, why do it? On the second day, I will probably be free from pain and stiffness. Admittedly this doesn’t last forever – these symptoms gradually return over the next few weeks, but the whole thing is worth it to me to have a bit of respite. I’ve tried other types of massage, and they just don’t work for me.

I wonder if other people do things like this, for example exercise, or a day out with friends. Please let me know…

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Posted May 20, 2011 by Dr Chris Moore in Uncategorized

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7 responses to “Fibromyalgia – A Question on Flares

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  1. I don’t deliberately do things, as such, to cause flares. I have notied that, now I am a single parent, my condition is worse. When my wife was alive I used to be able to rest more and so control my fibro better. Now I have to be up for the morning school run and do all the work around the house. Just one little walk in the park, trying to teach my daughter how to ride her bike, last Sunday has left me struggling to walk for the whole of this week. The look on her face when she realised she could ride her bike was worth it though.

    We have to push ourselves a little just to stop us giving up, it would be nice to stay in bed all day with others tending our needs but we would have no life.

    John Blanchard
  2. Well, IMS HURTS! I mean, the treatment in the first few sessions is literally torture! The first time, I just put up with it because of the promise. But when I felt my right shoulder “drop” rested for the first time in 15-20 years, even if it was only for a few hours, I figured the benefit is worth the agony!

    Then, after a number of treatments (depends on the patient history and the specific problem), the benefit has become more permanent AND the pain response has decreased remarkably. Now, most of my major complaints are mostly gone – though the nagging small stuff that makes life miserable persists.

    In terms of indulgence (e.g. party), I’m lucky that most of the triggers don’t appeal to me a whole lot. The noise and bother of parties discourages me enough to keep away. I don’t go crazy for any food, so I’m happy to limit my diet; my wife doesn’t drink and I don’t like drinking alone, so that is pretty well halted too.

    My only weaknesses are staying up (relatively) later and neglecting stretching routines. Even though the former has proven murder and the benefit of the latter is almost immediate, I have a hard time with the discipline.

  3. I tend not to let possible flare effect stop me from doing something. If I have big plans the following day maybe I would limit my exertion but normally no. I know what causes my flares but I will more likely just pay the price the next so I may enjoy my current. On the other hand I would never do something to put me in a huge flare that I wouldn’t be able to control. That would just not be wise. So i guess, for me, I live day by day and do what I enjoy and if a flare happens I deal with it then. I always know the flare will pass so no need to stop doing things in fear of a flare :).

    Denise Esterly
  4. I’m guilty of going back to doing my old club rigging and stage management job about once a month. I know that I’ll be left almost totally incapacitated for a week or 10 days afterwards but having spent 8 months without doing it, I also know that it’s something I need to do. I’ve been trying to work out why, and the best I can come up with is that makes me feel like a worthwhile human being; I’m currently happy to make the trade off.

    Nick Titchener
  5. Nick, John and Dr. Moore,
    please forgive my for being presumptuous, but it sounds like you really need to do stretching. I don’t have children, so I can’t compare myself, but I do have to get up at 5:00 to walk the dogs and exercise them when I get home in the evening… hard on the knees and back.

    If it’s not already a routine for you, your first bout of stretching can take as much as a month before you really feel any benefit. The 1st 2 weeks, you might even get discouraged by how you CAN’T bend at all. Keep at it, go gently but persistently. You WILL notice improvements when walking/standing around all day and running after your child on a bike.

    Most important are the legs (hips) and torso (spine). I actually spent over $120 for a specialized plan (http://www.drlamb.com/curefibromyalgia.htm). The quality of the video presentations and stretching demos are basic at best, but the routine, practiced diligently did wonders for me. I’m sure there are plenty of other routines that will also do the job.

    Of course, stress factors will always continue to amplify and I must admit my overall level has decreased a lot since graduation a year ago. But the stretching is still a major influence: neglect it and I’m a slave to the weather (literally); be diligent and I’m capable of weathering storms MUCH more easily.

  6. I dont deliverately choose to cause a flare, but if I stopped doing everything in my life id be a friggin vegetable. So, yes I have a day out now and again, enjoy myself and suffer for it after, but at least I have a day out, with some happy memories. Isnt this better than only ever having memories of pain and depression and the same 4 walls ?

  7. I love gardening and limit myself to walking round, picking weeds, etc, but in the end temptation gets the better of me, especially at the end of a flare when you sudenly feel energised, I fall into the trap and over do it, bang! back to flare mode. Why is it you feel great for a week or two, do something silly ,like this, but then you think you’ve got away with it and a week to two later your in agony trapped again housebound? I have tried pacing, meditiation, hot baths, being single its difficult to get a massage at home, and then a couple months or so later your back to the temptation stage. I have had fm/cfs and hyper-mobility syndrome for over 30 years, I am 52, but only got a diagnosis in 2009!

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