support for those working out with autoimmune issues
demoiselle2014
Posts: 474 Member
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?
Does anyone want to join me in a mini-support thread?
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Replies
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Plenty of us here doing our thing.
Get off the prednisone if you can. It's some nasty stuff if it's not temporary.9 -
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.1 -
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On this stuff for colitis. I can do cardio but lifting seems to be better. Good luck.1
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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!!1
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I was recently diagnosed with sarcoidosis. Add me if you want.1
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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.0 -
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? 4 -
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.3
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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 !1 -
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!0
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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.1 -
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.2 -
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.2 -
Sorry to hear that you are dealing with this. I was diagnosed with Crohn's disease 15 years ago and have taken more than my fair share of prednisone, so I can definitely commiserate. I know it's tough, but I will also agree that your number one goal should be trying to get off of the prednisone. Several years back I was taking a pretty high dose and unable to taper when I suffered a stress fracture in my foot. The MRI showed severe edema of my metatarsal bones, likely, according to my doctor, from extended use of prednisone. My mother suffers from Schleraderma and is now paying the price for extended use of prednisone in the form of severe osteoarthritis. Long term use of prednisone is not good.
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!!8 -
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.
Thank you! It feels so good!!! I was in the best mood today and I do believe the yoga helped!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.
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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!
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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.2 -
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.2
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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.1 -
canadianlbs wrote: »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.
Thank you,you describe it perfectly 1 -
strongerbytheday wrote: »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.
Heavy lifting is possible. I am med free and two months ago, I broke a IL state record in powerlifting at age 47 and looking to break at least one more in a few weeks. There is data that lifting heavy is very helpful with ones such as RA & Psoriasis.
You may lose some strength, but muscle I wouldn't worry about especially if your volume is high enough for muscle stimulas and your protien intake is above adequate for your LBM. You might have to make smart adjustments to whatever hypertrophy program you are running to more a strength program since that is less stress on joints and connective tissues.comptonelizabeth wrote: »Ps I'd welcome tips on how to tailor workouts during info@wihumane.org worried about losing the muscle I've gained. I seem to take 2 steps forward and one step back!
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It is truly frustrating, and I know what you mean by having a "tiny tank," canadianlbs. I find it to be something of a catch-22, because when I was worst (before I got diagnosed) through my first weeks of treatment, I was doing less and less because I had such low energy, and I think I just got weaker. I had so little energy I couldn't imagine dedicating it to exercise, which I thought would wear me out.
Once I came to an agreement with my husband that I would prioritize exercise and sleep, even at the expense of other things, I started to get better. Just using the elliptical for 30 minutes seemed to improve my energy level and mood for the rest of the day.
I still have moments when my energy is suddenly gone, and those are frustrating, but I am finding that I can still work out, even though I may have to be patient with myself because I'm not progressing as fast as I think I would otherwise.
I had a good week in exercise. I did the fourth week of C25k for the second time, and the last day was still challenging. I'm not sure whether I will move on or repeat again. I suppose I'll do Week 5 Day 1, and if I fail I'll repeat Week 4 again. I keep meaning to go to the gym and lift weights, but it's just not happening with my household responsibilities. I'm doing rollups and push ups nightly, and I may try using an exercise video at home to work on some strength stuff.4 -
I have all the symptoms of Sjogren's syndrome but my bloodwork is all seronegative. Severe dry eye, dry sinuses, dry mouth, Chronic Fatigue, Raynaud's, intermittent RLS, intermittent joint pain, intermittent headaches all the way down my spine. I manage to make myself workout 5 days a week at home using strength and cardio videos and sometimes walking, even though my sleep is disturbed due to who-knows-why and the dry eye. Corneal erosions are evil.
I'm doing pilocarpine and Plaquenil right now from my GP, but I've been waiting 4 months for a rheumatologist who may or may not treat me since I'm seronegative. I hope I make the team. I still have about 2 weeks to wait for the appointment.
The fatigue is such a pill. And the hip pain is annoying...and the dry eye issue.
It's frustrating because I lost all the weight and got fit, but developed this mess. I still refuse to lay down and loose all I've gained.
Anyway, thought I'd pop in to meet some people with a similar struggle and to tell you all to hang in there.
Have a great day! 1 -
I have fibromyalgia. When it flares up I am extremely exhausted and hurt all over. I am currently trying to get back into working out as I have gained some unwanted weight in the last few months. The days that I am exhausted and in pain, I find it very hard to workout. I just try to take it slow and if nothing else, walk on the treadmill, something is better than nothing.3
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demoiselle2014 wrote: »It is truly frustrating, and I know what you mean by having a "tiny tank," canadianlbs. I find it to be something of a catch-22, because when I was worst (before I got diagnosed) through my first weeks of treatment, I was doing less and less because I had such low energy, and I think I just got weaker. I had so little energy I couldn't imagine dedicating it to exercise, which I thought would wear me out.
Once I came to an agreement with my husband that I would prioritize exercise and sleep, even at the expense of other things, I started to get better. Just using the elliptical for 30 minutes seemed to improve my energy level and mood for the rest of the day.
I still have moments when my energy is suddenly gone, and those are frustrating, but I am finding that I can still work out, even though I may have to be patient with myself because I'm not progressing as fast as I think I would otherwise.
I had a good week in exercise. I did the fourth week of C25k for the second time, and the last day was still challenging. I'm not sure whether I will move on or repeat again. I suppose I'll do Week 5 Day 1, and if I fail I'll repeat Week 4 again. I keep meaning to go to the gym and lift weights, but it's just not happening with my household responsibilities. I'm doing rollups and push ups nightly, and I may try using an exercise video at home to work on some strength stuff.
I have found that I feel better when I make exercise a priority as well. I think that it's physical as much as it is mental. But, like everyone else here, there are times when I just can't (and shouldn't) push myself to exercise. Finding that balance can be tricky. In my opinion, it's an important part of managing my life with this disease.1 -
strongerbytheday wrote: »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.
Heavy lifting is possible. I am med free and two months ago, I broke a IL state record in powerlifting at age 47 and looking to break at least one more in a few weeks. There is data that lifting heavy is very helpful with ones such as RA & Psoriasis.
You may lose some strength, but muscle I wouldn't worry about especially if your volume is high enough for muscle stimulas and your protien intake is above adequate for your LBM. You might have to make smart adjustments to whatever hypertrophy program you are running to more a strength program since that is less stress on joints and connective tissues.comptonelizabeth wrote: »Ps I'd welcome tips on how to tailor workouts during info@wihumane.org worried about losing the muscle I've gained. I seem to take 2 steps forward and one step back!
Thank you ,that's helpful. At the moment I'm doing strong lifts 5x5 but very slowly!
I find that taking adequate rest breaks in between sets is really important- I used to skip it but have noticed a big improvement since I started resting properly.2 -
I bought a recumbent bike about a year after my pulmonary sarcoidosis diagnosis, and it was really helpful for days when I wasn't sure I had the energy to go walk outside but still wanted to do whatever I could. There were days when I would just sit down, pedal for a minute or two and then be done, but other days I ended up doing more, and I think it helped me slow the loss of lung function and eventually turn it around. I've been in remission for about 6 months but still use it a few times a week.
I do wish I'd done more to retain LBM. Even though my weight remained stable, I ended up going from around 20% body fat to over 30% in 3 years and it's been very hard to turn that around.0 -
comptonelizabeth wrote: »strongerbytheday wrote: »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.
Heavy lifting is possible. I am med free and two months ago, I broke a IL state record in powerlifting at age 47 and looking to break at least one more in a few weeks. There is data that lifting heavy is very helpful with ones such as RA & Psoriasis.
You may lose some strength, but muscle I wouldn't worry about especially if your volume is high enough for muscle stimulas and your protien intake is above adequate for your LBM. You might have to make smart adjustments to whatever hypertrophy program you are running to more a strength program since that is less stress on joints and connective tissues.comptonelizabeth wrote: »Ps I'd welcome tips on how to tailor workouts during info@wihumane.org worried about losing the muscle I've gained. I seem to take 2 steps forward and one step back!
Thank you ,that's helpful. At the moment I'm doing strong lifts 5x5 but very slowly!
I find that taking adequate rest breaks in between sets is really important- I used to skip it but have noticed a big improvement since I started resting properly.
SL is a strength based program and not a hypertrophy or muscle building per sae, so that is good.
I might suggest you look at Starting Strength program and book. It is the program SL pretty much ripped off. SL has too much volume than is necessary and doing three sets of five would be beneficial not only to your strength gains but your joints rather than 5x5.
I ran SL 5x5 when coming off chemo/radiation/surgeries for about five months and found Starting Strength is superior for many reasons.
I strongly suggest you buy the Starting Strength book 3rd addition even if you continue on SL5x5. It has a plethora of information that anybody who is a novice can benefit from not to mention somebody with a autoimmune disease. It teaches you how to properly lift which is gold as far as progress goes.
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I have hashimotos and endometriosis. I have found that remaining active really helps me feel better even though it was hard to get started initially. Weight loss is still slower but that's ok because I'm building healthy habits2
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