just diagnosed with fibromyalgia

  1. JOC26
    Just diagnosed with fibromyalgia - apparently I've probably had it for about 18 years... maybe a few less - can't remember exactly... anyways, I set a small (for me) exercise goal and am working with a naturopath/ acupuncturist on regulating sleep cycle, hormones (PCOS), eating,etc. So far it's been very helpful, though the changes are slow coming. Was wondering where some other people started with learning and coping skills and all that. Not thrilled at the idea of educating myself on yet another health issue, but the long list of issues I've written out does make me feel strangely accomplished, lol.
  2. purpleclouds
    I had some physical therapy before the pain got to bad. Mine comes and goes--always a bit of pain but it definitely flares up. What my PT said was to start at 5 minute of exercise on like the bike and then the next time 7 minutes and so on. I've heard yoga can be helpful. I go on walks when i can. But stuff is still hard--stairs in particular leave me out of breath and exhausted. I sleep when i need to but try not to stay in bed too much because it causes more pain sometimes. For me gabapentin has been a life saver--heavy duty pain meds haven't really worked. This is an interesting topic! I would love to hear everyone else's skills.

  3. JOC26
    Thanks, PurpleClouds Sorry you can relate. Do you mind if I ask if you had to request PT from your doctor or if the doctor just brought it up?

    In coping skills I've developed to this point, I have found yoga to be extremely helpful for pain. However, I have had to modify it and slow it down and do it very infrequently, which is not something I'm happy about. Still, it helps even then. I do it on my own, too, for financial reasons, which makes it an even slower process. Stretching helps me even when I haven't walked or anything.

    I'm thinking maybe I should try to carry around some kind of support pillow in a tote or something, because sitting hurts a lot
  4. purpleclouds
    Oh i don't mind at all! My rheumatologist referred me to PT and there's a PT practice associated with her practice. I've tried twice. Mostly for my back and hips. The pain is different though it morphs. i don't remember if PT was helpful to be honest but it works wonders for some people! I'm sure you could ask even if they didn't bring it up. Part of it for me is i have hyper-mobility and bursitis and back problem and a bulging disk in my neck etc so i wasn't there simply for fibro--they were mainly trying to strengthen my core to help with other things. The second time i had PT they gave up on me and were like "your in too much pain we can't help you until you see a pain specialist." so i saw a pain specialist and now they won't see me anymore *Sigh* but narcotics weren't really helping either. they did give me a back brace and some really expensive topical cream i can't afford to refill.
    Sitting was super hard for at one point when the lower back pain seeped all the way to my tailbone. I would literally fidget all the time and stand at the back of the class during lectures.
    A pillow is a good idea. I saw these and thought about them if i ever experience pain in that area again. I was planning on getting the mattress by this company but the seat/back cushions seem cool and come in a variety of forms i guess to suit whateve kind of pain you have.

  5. JOC26
    Thanks, purpleclouds! Sorry you've got so much other pain stuff going on. Hope you have a low pain, low stress day soon
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