Hi I'm looking for friends with fybromyalgia, chronic fatigue

50_to_lose
50_to_lose Posts: 28 Member
edited December 18 in Introduce Yourself
Hi
I have recently been diagnosed with a central sensitivity syndrome, the new way of describing fybromyalgia and chronic fatigue syndrome. I have endured chronic pain and fatigue amongst other things for many years and have progressively got worse as I have aged.

I no longer go to the gym as I can't resist the temptation to lift heavy weights and push myself way beyond my limits which just ruins me for days after. I have lost my job because of my health and am now coming to terms with having an extremely debilitating condition.

I have been on here before, this is an old account, and had some success with losing weight so I'm giving it another shot. My only goal on here is to lose weight just to feel better about myself, I don't think losing weight will help relieve any pain as the pain is neurological rather than rheumatoid but if feeling better about myself gives me a psychological lift that helps block some pain out then I will call that a result.

For me now it's about rebuilding my life and coming to terms with my life as it is now and looking to the future. I need to redefine my exercise limits and start eating the right amount of calories for my new lifestyle.

I'm hoping to find people on here who have a condition such as mine and understand how difficult and frustrating life is/can be with this condition as people without it can never truly understand how it feels.

Replies

  • dawnrpurvis
    dawnrpurvis Posts: 27 Member
    I've added you!

    I have suspected Fibromyalgia/Chronic Fatigue/ME (trying to get a definitive diagnosis from a doctor is proving very difficult). I seem to go through cycles of it, as in I am not ill every day, but then I have a few months where it effects me quite badly.

    I find my pain is there even when I don't have fatigue, and I found that for me, strength training (starting off very gently) has improved my pain. Whenever I stop exercising for about a week or more, the pain becomes much worse.

    Seeing as you cannot currently work I can assume that really any kind of exercise is off limits? I'd maybe try to just concentrate on your diet instead.
  • 50_to_lose
    50_to_lose Posts: 28 Member
    Hi madebs666

    I can and do exercise but only at maybe 50% of my capacity. For me it was a long process getting diagnosed but I finally met a pain consultant and when I gave him a brief 10 year health breakdown he diagnosed me with central sensitivity syndrome. Most GP's are very dismissive of it and only want to treat your current problem rather than looking at the complete picture.

    I as yourself have pain present all the time and pain killers do little to relieve it, even morphine patches. The medication I have now does help a little but the main reason I cannot work is my cognitive function is greatly reduced and I'm prone to falling asleep at random times and can even manage to nod off while standing, much to the amusement of my wife.

    I hope you meet a doctor soon who will be able to help you improve your situation.

    All I know is that journey ahead will be challenging but hopefully I can stay motivated and lose the weight I want to.
  • div9diva44
    div9diva44 Posts: 151 Member
  • div9diva44
    div9diva44 Posts: 151 Member
  • xjulesjx
    xjulesjx Posts: 75 Member
    Add me please. I too am a cfs/fybro sufferer. I was only diagnosed March 2014 after years of been poorly.
  • coral_b
    coral_b Posts: 264 Member
    All feel free to add me. Diagnosed 6 months ago, been suffering for years. I find pain is worse and more frequent than the fatigue, but I've gone from lifting, running and exercising and getting down to a healthy lean weight, to being my heaviest and only just managing work. I'm fortunate as I see a specialist and physio every 8-10 weeks, but I can no longer exercise and have gained 2 stone what with Meds and eating crap just to get through the day. It's so tough, I'm finding mentally the idea of eating right, planing meals etc exhausting, but planning to start up again now as my body is failing without being overweight as well. Let's hope we can support/ motivate each other. I'm trying to adapt a "health not weight" mentality x
  • simi5064
    simi5064 Posts: 30 Member
    I don't have that but I have Multiple Sclerosis. Diagnosed 2013. Feel free to add me!
  • 1809062
    1809062 Posts: 1 Member
    I just got diagnosed with central sensitivity syndrome this January 2016. Have multifactorial pain, mild scoliosis, degenerative disc disease, osteoarthritis in my lower spine and thumb joints as well I have gerd and ibs. MFP has been a great tool along with my Fitbit to help monitor my activity levels so j don't do to much during the day. It allows me to do some exercise by walking and swimming with stretching or breaks in between. Before j used to push myself and j would be out for days. Learning pain management currently and how to negotiate or compromise with myself daily on what I can do versus what I can't. Currently struggling with allergic reaction and need to see allergist. Feel free to add me<3, life is a roller coaster sometimes you just have to throw your hands up in the air, laugh and scream until it slows down!
  • IAmGainingHealth
    IAmGainingHealth Posts: 18 Member
    I friended you.
  • petitchatnoir41
    petitchatnoir41 Posts: 56 Member
    edited January 2020
    I am finding out my diagnosis soon hopefully. It's been 1.5 years. I am tired all the time, in pain. . . .sometimes I feel okay. Sometimes I do not feel okay. I workout anyway and just take a nap. It is speculated that I either have fibromyalgia or polyneuropathy. I find out hopefully tomorrow what is the verdict! I will add you!
  • AlexandraFindsHerself1971
    AlexandraFindsHerself1971 Posts: 3,106 Member
    I friended you. I have had fibro and some associated syndromes and conditions for the last twenty years. We have detente, and I live life around and beside it and with it and I manage to have a pretty good life overall.

    I can tell you how I handled the gym, if you're interested.
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