Fibromyalgia/RSD sufferers support

kfrazi13
kfrazi13 Posts: 14 Member
edited November 18 in Motivation and Support
Hello all! I have fibromyalgia and RSD and know that others out there also have similar nerve disorders or autoimmune problems. Not only does it make working out harder, the medicine has actually made me gain a lot of weight. Anyone else out there struggling? Perhaps we can band together and help support each other in our weight, exercise, and nutrition goals! <3 Feel free to add me as a friend, by the way

Replies

  • SpringBack20
    SpringBack20 Posts: 9 Member
    :| I was diagnosed with fibromyalgia about 1 month ago and have never been so frustrated!!!! I used to walk/run and now I can't even walk 1 hour without suffering for the next two days. I have severe insomnia - lucky if I get 3 hours (not consecutive) a night. I have put on about 20 lbs in the last year (likely due to the sleep deprivation and following gallbladder surgery) as I have forever been a healthy eater. I have followed a weight watchers-type diet since the age of 20 and am now 45. I have struggled with weight loss, pain in back, knees, neck, shoulders, feet, ankles and hips for at least the past ten years - I now know why..... Is there anyone out there who has been successful with weight loss while suffering from this terrible condition? I'm still at the "figuring out stage" and am going crazy. The only time my body seems to be happy is when it is in a therapeutic pool doing gentle water aerobics. I refuse to take meds. I'm terrified of side effects. I am now seeing a naturopath and she has recommended fish oil and magnesium malate which has definitely reduced my pain level during the day and my restless leg syndrome at night. I am slowing coming to the realization that my life has changed forever but I desperately want to lose the extra weight because I know it will aid in the reduction of pain. Anyone out there with similar issues/frustrations?
  • mousie1973
    mousie1973 Posts: 438 Member
    i have been dealing with fibromyalgia for about 20 years , i know the struggle you go through, recently i have had to use a wheelchair occasionally, so i finally said nope, no mpre, i am not on any meds due to lack of health insurance (i have a very high tolerance to pain, because of dealing with it for so long), i am now eating a paleo/primal diet and trying to drink more water (that is my biggest downfall), just wanted to lend an arm of support, feel free to add me
  • opalsqueak007
    opalsqueak007 Posts: 433 Member
    uncharted1970 wrote: »
    :| I was diagnosed with fibromyalgia about 1 month ago and have never been so frustrated!!!! I used to walk/run and now I can't even walk 1 hour without suffering for the next two days. I have severe insomnia - lucky if I get 3 hours (not consecutive) a night. I have put on about 20 lbs in the last year (likely due to the sleep deprivation and following gallbladder surgery) as I have forever been a healthy eater. I have followed a weight watchers-type diet since the age of 20 and am now 45. I have struggled with weight loss, pain in back, knees, neck, shoulders, feet, ankles and hips for at least the past ten years - I now know why..... Is there anyone out there who has been successful with weight loss while suffering from this terrible condition? I'm still at the "figuring out stage" and am going crazy. The only time my body seems to be happy is when it is in a therapeutic pool doing gentle water aerobics. I refuse to take meds. I'm terrified of side effects. I am now seeing a naturopath and she has recommended fish oil and magnesium malate which has definitely reduced my pain level during the day and my restless leg syndrome at night. I am slowing coming to the realization that my life has changed forever but I desperately want to lose the extra weight because I know it will aid in the reduction of pain. Anyone out there with similar issues/frustrations?

    Very sorry to hear about that. My docs have told me that I have Chronic fatigue syndrome and probably Rheumatoid arthritis. I have chronic Reynauld's disease in my hands and feet which are constantly painful and cold. I have Osteo arthritis also in my hands and knees. I also have permanently inflamed lymph glands. I take no meds at all as I did not like the sound of the side effects. My symptoms were as you describe for the last 7 years or so, and came on after I caught swine flu. I felt terrified and powerless, and in so much pain. I gradually put on weight and was 194lb last year. I decided to lose weight, give up alcohol completely, eat better and try and get a bit stronger. I am now 140lb.

    My symptoms are greatly reduced, although still there. I am not exhausted all the time. My pain is not nearly as bad. Losing weight was a great thing for me. It was hard, but worth it. I wish you well, and here are before and now pictures which I hope might inspire you. I am 51 by the way, and in perimenapause. Good luck to you. I really do know how you feel.

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  • Stacivogue
    Stacivogue Posts: 325 Member
    I have RSD in my left foot. It's been so hard to deal with, but nerve blocks, medication. Ice and orthotics seem to help, plus spinning rather than running. Trying to get my life back on track but it's hard
  • kfrazi13
    kfrazi13 Posts: 14 Member
    Thank you for sharing your stories! I absolutely understand the frustration and the difficulty you guys are expressing. I have been struggling with it a few years now, and still struggle with the absolute halt to "life" that seems to come with it all, as uncharted mentioned. Like Mousie mentioned, am now avoiding meds due to the awful side effects. I am inspired by your weight loss opal! Wow! Hoping that losing weight will reduce some of my symptoms as well. Staci, I have RSD in my upper back/neck (which later led to fibromyalgia, as if that wasn't rough enough!) so I understand how frustrating that must be for you! And in your foot too, that has to be awful!
    Feel free to add me and just know you are not alone in the fight!
  • opalsqueak007
    opalsqueak007 Posts: 433 Member
    kfrazi13 wrote: »
    Thank you for sharing your stories! I absolutely understand the frustration and the difficulty you guys are expressing. I have been struggling with it a few years now, and still struggle with the absolute halt to "life" that seems to come with it all, as uncharted mentioned. Like Mousie mentioned, am now avoiding meds due to the awful side effects. I am inspired by your weight loss opal! Wow! Hoping that losing weight will reduce some of my symptoms as well. Staci, I have RSD in my upper back/neck (which later led to fibromyalgia, as if that wasn't rough enough!) so I understand how frustrating that must be for you! And in your foot too, that has to be awful!
    Feel free to add me and just know you are not alone in the fight!

    Thank you for the FR and your very kind comments. Losing weight is the thing that helped me most. i couldn't exercise until I dropped 40lb. In fact, I couldn't get up the stairs myself or get into the bath, so exercise was just not going to happen. Main thing is to get nutrition as good as you can, and keep the calories to the right level. The weight will come off, and things start to improve :)

  • Bella_ca
    Bella_ca Posts: 4 Member
    I was diagnosed with fibromyalgia about 2 years ago. I refuse to take meds for it other than advil now and then as needed. I'm really sensitive to medications so I know the side effects alone would not make it worth it. I swim laps faithfully 3x week. It's the only exercise I can do that doesn't make me sore!

    I've lost weight using the app and have learned where I go wrong .... too many high calorie snacks! Also my snack portions were too big. Cutting down on portion size and drinking water instead of juice has helped a lot.

    Hang in there :)
  • kfrazi13
    kfrazi13 Posts: 14 Member
    Swimming does seem to be the least abrasive exercise for our issues, I need to do that more often! Thank you for sharing your experience! :)
  • chatterbox3110
    chatterbox3110 Posts: 630 Member
    I was diagnosed with fibromyalgia in 1998. It made me slow down and my weight shot up to almost 27 stones before I found the inner strength to fight back. Im currently just over 17 stones but my joints hurt just the same and the pain never goes away. My struggle now is a mental one as my head still tells me im a size 34 when I fit into 20-22 clothing. I walk a lot and swim when I can afford to. When my body tells me to stop i stop lol otherwise I keep plodding on. Good luck!
  • spenrey
    spenrey Posts: 34 Member
    Hi All
    Very inspiring. My wife has been diagnosed with arthritis and takes to exercise gingerly now as she may end up in pain the next day. How do you all manage the pain and keep to the exercise?

    Thanks
    Spencer
  • SpringBack20
    SpringBack20 Posts: 9 Member
    The best advice I can give is go back to basics to try and figure out what your body can handle. Start with a 5 minute easy walk and if that works, try 5 more, etc. Also, if you can get her in a therapy pool with your community centre, that has helped me tremendously! If you are able, maybe have her work with a physiotherapist for a short time to give her some guidance since this is all new for her. I wish you both well. Keep us posted on her progress!
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