support for those working out with autoimmune issues

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demoiselle2014
demoiselle2014 Posts: 474 Member
in Fitness and Exercise
Are there other members here trying to stay fit while dealing with autoimmune illnesses? I am under treatment for Sjogren's Syndrome, currently taking prednisone (and I have been for more than four months). That medication presents its own challenges in terms of fitness, and I feel like I have no one to discuss the process of staying/getting fit with who understands.

Does anyone want to join me in a mini-support thread?
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  • Hamsibian
    Hamsibian Posts: 1,388 Member
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    Prednisone sucks. Sorry you're on it, even though it can do some amazing things. I am on Entorcort now, and I am not impacted by it.

    I have Crohn's Disease, and because I am trying really hard to gain, fitness is tough. I have to really limit my cardio for now, but I can't be sedentary (it makes me feel so sluggish), so I lift weights. It's light, but with exercise and diet, my symptoms and lab markers have improved significantly. If anything, it can be a motivator.
  • demoiselle2014
    demoiselle2014 Posts: 474 Member
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    Chieflrg wrote: »
    Plenty of us here doing our thing.

    Get off the prednisone if you can. It's some nasty stuff if it's not temporary.

    I know. I am currently on a taper, but we are trying to get the autoimmune condition into remission. Nasty as prednisone is, I was much worse off before.
  • debbieled12
    debbieled12 Posts: 13 Member
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    On this stuff for colitis. I can do cardio but lifting seems to be better. Good luck.
  • charmedraquel
    charmedraquel Posts: 6 Member
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    I have psoriatic arthritis which I take methotrexate for, I struggle to keep up my fitness when I'm having a flare up so could do with some motivation or some tips to keep going!!
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
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    I was recently diagnosed with sarcoidosis. Add me if you want.
  • skonger
    skonger Posts: 26 Member
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    I've got Hashimoto disease, had it for years.
    It hasn't really hindered me too much, weight loss takes longer then usual but other then that, I'm pretty active.
    The only thing that has sidelined me for a long length of time was the crushed ankle.
  • strongerbytheday
    strongerbytheday Posts: 116 Member
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    I have RA and I'm ready to embark on a beginner program, I'm starting this Ease into in -30 Days of Yoga
    :) Today is day one for me! Who wants to join me? :)
  • jguidroz
    jguidroz Posts: 17 Member
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    I have Lupus and I have been taking prednisone for 5 months now. Between sever fatigue, muscle weakness, and joint pain I am struggling. Gaining weight on the prednisone and being so inactive. I can relate to how you feel. It's hard to adjust to the medications on top of the condition itself.
  • comptonelizabeth
    comptonelizabeth Posts: 1,701 Member
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    I'm on prednisolone for ulcerative colitis. Tapering but now steroid dependant so it's taking a long time.
    I'm doing stronglifts but having to take it very slowly. Pred actually causes muscle wasting in the arms and legs if taken long term and I can vouch for this !
  • comptonelizabeth
    comptonelizabeth Posts: 1,701 Member
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    Ps I'd welcome tips on how to tailor workouts during flares. I'm currently flaring and have had to ease off but worried about losing the muscle I've gained. I seem to take 2 steps forward and one step back!
  • demoiselle2014
    demoiselle2014 Posts: 474 Member
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    I wish I knew what to do, but that's part of why I started this thread! The muscle fatigue is hard to deal with, and the only thing that I've found that helps is exercise . . . which is hard because of the unnatural fatigue. I'm doing C25K now, a program that I have done in the past, and it can be so discouraging because I keep having to repeat weeks (the first time I did it, I only repeated one week).

    On Tuesday, I did Week 4 Day 1 for the second week in a row, and I could barely lift my feet off the ground. I finished, but I was frustrated that I was not feeling stronger, not seeing the results I expected.

    I am trying to focus on other measures of improvement from the past, like the fact that my heart rate is lower even though I'm jogging, I'm not out of breath, etc.
  • demoiselle2014
    demoiselle2014 Posts: 474 Member
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    jguidroz wrote: »
    I have Lupus and I have been taking prednisone for 5 months now. Between sever fatigue, muscle weakness, and joint pain I am struggling. Gaining weight on the prednisone and being so inactive. I can relate to how you feel. It's hard to adjust to the medications on top of the condition itself.

    It certainly is! In many ways, I feel better than I have in years, but when I taper it's just so awful for a while (weeks!). I'd been pretty pleased by how I'd kept my weight in check despite the prednisone, but now that I've been on it for 5+ months I find I am up 10 lbs. That puts me just over the top of my desired weight range, right to where I start to dislike how I look a little.

    I don't know that it's the medication's fault that I've gained weight, though. In the same period of time, I was told to stop eating wheat, and now my husband is baking all kinds of yummy gluten-free things. I eat more consistantly than before, when I'd often have tummy aches.
  • demoiselle2014
    demoiselle2014 Posts: 474 Member
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    strongerbytheday wrote: »
    I have RA and I'm ready to embark on a beginner program, I'm starting this Ease into in -30 Days of Yoga
    :) Today is day one for me! Who wants to join me? :)

    Good luck on this! Yoga is wonderful. I used to do it every morning first thing, but fell out of the habit when I got an early morning job.
  • strongerbytheday
    strongerbytheday Posts: 116 Member
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    Just to piggyback what Iporter229 said, I was in terrible shape for over 2 years, prior to my diagnosis. It was the biologic drug, Enbrel that made all the difference for me and my RA symptoms. I'm also taking Methotrexate with it, but the Methotrexate alone didn't do much for me. Autoimmune diseases are no joke, and finding balance with the drugs, diet, exercise (in addition to family& work) is important. For me it had been a year and a half since my diagnosis and medication trials and I'm just now ready to begin light exercising. Be very gentle with yourself and listen to your body.
    demoiselle2014 wrote: »
    strongerbytheday wrote: »
    I have RA and I'm ready to embark on a beginner program, I'm starting this Ease into in -30 Days of Yoga
    :) Today is day one for me! Who wants to join me? :)

    Good luck on this! Yoga is wonderful. I used to do it every morning first thing, but fell out of the habit when I got an early morning job.
    Thank you! It feels so good!!! I was in the best mood today and I do believe the yoga helped!
  • demoiselle2014
    demoiselle2014 Posts: 474 Member
    edited August 2017
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    lporter229 wrote: »
    I do not know much about your condition, but currently a class of drugs called TNF blocking biologics are found to be very effective in helping with various autoimmune disorders. You may have seen the ads for Humira, Embrel, Entivio, etc? I currently am on one called Remicade which is administered via infusion every 6 weeks. It has been a miracle drug for me and the only thing that helped me get off of the pred. Three years ago I was hobbling around in a boot with a stress fracture, weighed 95 lbs and could barely exercise due to nutrient maladsorption. I was at rock bottom wondering if I would ever be able to run again (my passion). This past year I accomplished a life long goal of qualifying for and running the Boston Marathon. So please do not give up hope. I does get better, just hang in there. I would definitely suggest talking to your doctor about other options for long term maintenance drugs and trying to get off the pred. Good luck!!

    Congratulations on your run in the Boston Marathon! How wonderful!

    I do have a plan for getting off the prednisone, I'm currently tapering and will hopefully be able to keep my condition under control with a different, better tolerated medication. Unfortunately, I needed to have the prednisone to get the flare under control fast, because the second medication takes many months to kick in. Is Remicade the same as Rituxin? I believe that is the next treatment in line should the first line not be enough.

    I really hope that I don't suffer a broken bone before I get off this medicine. I'll make sure to take my calcium!

  • cyndit1
    cyndit1 Posts: 170 Member
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    I have RA and SLE and take methotrexate, Cimzia and Plaquenil and I refuse to take prednisone (took it at very high doses when first diagnosed and wound up with a serious infection). I also am a distance runner currently training for my second NYC Marathon. I've done 2 other marathons and about 40 half marathons in my running career and I say this because with a well managed illness and a good supportive medical team I remain very active. BUT when I am flaring I do give myself a break and take what time I need. It does get better...

    Also as a side note, one of the little mentioned side effects of prednisone is achilles tendon rupture.
  • strongerbytheday
    strongerbytheday Posts: 116 Member
    edited August 2017
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    Seeing how far some of you have come with controlling your illnesses is very encouraging! I used to lift heavy and didn't think I ever could again but reading this gives me some hope.
  • canadianlbs
    canadianlbs Posts: 5,199 Member
    edited August 2017
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    comptonelizabeth wrote: »
    Ps I'd welcome tips on how to tailor workouts during flares. I'm currently flaring and have had to ease off but worried about losing the muscle I've gained. I seem to take 2 steps forward and one step back!

    right? if it helps any, flares always felt to me like suddenly having a tiny gas tank. like, tiny. i'd still be 'fine' while there was gas to burn, but suddenly there'll be only enough gas at a time to brush my teeth and get into my shoes. then by the time i was about ready to lean down and tie them up all the gas would run out and i'd need another four-hour nap to gain another two tablespoons' worth.

    so personally, the way i managed flares was to just stay within the range of that tiny tank. it just never has worked for me to try and push past its capacity. the hardest part is for me to believe/trust that the situation is temporary, and my normal-sized tank WILL come back if i just wait the flare out and take care of it on its own terms. i guess what i did learn the extremely-hard way was: there actually isn't anything i can do to 'control' a flare or drive it. my only power seems to be the power to not make it worse than it already is.

    hate it, and every flare always brings this little grief and rage patch every time it wears off and i'm back looking at the drab reality of the 'real' life i haven't been part of because of it. but, yeah. i try to shield myself emotionally by not overinvesting in either the flared or the free-of-flare state. ime all of it will eventually turn out to have been 'temporary' anyway.

    feel for you.

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