support for those working out with autoimmune issues
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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
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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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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.
Thank you, I'll look into it! I agree about the volume with SL - it is way beyond me !0 -
I too have hashimotos. It is seriously so hard to get myself to the gym but once I'm there I get it done and I feel so much better afterwards. It's just hard to build up the energy to do it. Even pre workout doesn't kick in until I'm there1
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Hashimotos here too. It's definitely hard to do the things you want to do, but can't seem to find the energy for. Slowly building healthy habits....1
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Hang in there!!! Fitness is hard enough without extra challenges, however, it is worth it for the extra energy and mood lift it gives.
I developed guillain barre syndrome 8 years ago. While this is an immune disorder that doesn't flare, it has left me with permanent nerve damage. I took prednisone for 5 months. It was wonderful and terrible all at the same time. I gained so much weight while on it.... I empathize with your struggle.
I stared running 1.5 years ago with C25K. It took me twice as long to finish it - but I did. I am now training for a half marathon. The nerve damage actually has an upside when it comes to running. I cant feel half of my feet. LOL! I still struggle with strength training. I do it twice a week to keep my strength up - but the nerve damage makes it hard.
To the person who mentioned yoga: I started my fitness journey with yoga and still love it! My first yoga teacher was the best. She taught me to love and listen to my body instead of fighting against it. Life changing! 2 -
I have exercise induced anaphylaxis, chronic urticaria and suspected bechets disease. I take immunosuppressants, colchicine, antihistamines and a host of others. My symptoms are currently controlled so I'm finally able to start doing more, but on my less able days I remind myself that when I push too hard I end up more ill so I take a pj and film day or whatever it is my body needs0
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My son and I have ankylosing spondilitis. Echoing what others have said -- biologics saved our lives. I could push through pain but not fatigue. Little by little I worked up to where now I am a Crossfitter. IMO every body is different and every day is different. You do the best you can but there is no magic bullet. Are you familiar with Spoon Theory? Anyway hope you are doing ok.1
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I have fibromyalgia and neuropathic pain. When the fybromyalgia is flaring I still do my usual cardio program on the x-trainer as it is low impact but I find doing resistance training difficult with the pain throughout my body. Today I tried doing just one set of each weight lifting exercise (after the cardio) and felt proud about getting it done but have then spent the rest of the day prone. I agree that the endorphins from exercise are wonderful but being physically unable to do anything after exercising is frustrating.0
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i was thinking about this for a while, so pardon me using this thread to get it off my chest.
it's not hard (so far) for me to lift consistently. as far as going to the gym and doing the lifts, that has not been my challenge so much. but all of compound lifting is proprioception - using the sensory signals your body sends you to 'find' and then guide each part of it so you're doing the right things with the right muscles at the right time.
that's a joke with a body like mine. it just never tells me the same story for long enough - and it's arbitrary. this really drives me insane. i can make a few weeks' worth of progress at something, get used to the sensory signals of it, and then come a day in week four when i'll go to do it and suddenly yeah. now my hamstrings or traps are speaking urdu instead and i don't know what they're saying so i no longer know where 'my' form is.
i have to admit that this gets to me. i waste so. much. time, just dicking around at another dose of square one because something feels different and i no longer trust myself until i've re-done the whole groove-greasing thing for the zillionth time. and it gets to me because i do lift consistently. i don't feel like my disorder is anyone's business but mine, but i mind when people sometimes ask me how come i 'never' seem to 'go up in weight' becase they've been watching me do this kidn of hting with apparently-to-them decent form for years now.
i mean, most of them are respectful, and yadayadablahblah and whocareswhattheythink and so forth. but stuff that. it still gets to me and makes me aware that i'm different, and being aware that i'm different makes me sad about the non-different stuff that i'm missing out on.
okay, done. thx.1 -
canadianlbs wrote: »i was thinking about this for a while, so pardon me using this thread to get it off my chest.
it's not hard (so far) for me to lift consistently. as far as going to the gym and doing the lifts, that has not been my challenge so much. but all of compound lifting is proprioception - using the sensory signals your body sends you to 'find' and then guide each part of it so you're doing the right things with the right muscles at the right time.
that's a joke with a body like mine. it just never tells me the same story for long enough - and it's arbitrary. this really drives me insane. i can make a few weeks' worth of progress at something, get used to the sensory signals of it, and then come a day in week four when i'll go to do it and suddenly yeah. now my hamstrings or traps are speaking urdu instead and i don't know what they're saying so i no longer know where 'my' form is.
i have to admit that this gets to me. i waste so. much. time, just dicking around at another dose of square one because something feels different and i no longer trust myself until i've re-done the whole groove-greasing thing for the zillionth time. and it gets to me because i do lift consistently. i don't feel like my disorder is anyone's business but mine, but i mind when people sometimes ask me how come i 'never' seem to 'go up in weight' becase they've been watching me do this kidn of hting with apparently-to-them decent form for years now.
i mean, most of them are respectful, and yadayadablahblah and whocareswhattheythink and so forth. but stuff that. it still gets to me and makes me aware that i'm different, and being aware that i'm different makes me sad about the non-different stuff that i'm missing out on.
okay, done. thx.
Is this why I never progressed much with strength training? I'm currently doing bodyweight and am going to add kettlebell swings (I'm waiting for a gizmo from Amazon to use plates from my adjustable dumbbells on a kettlebell handle) just to mix things up.
I've been at a loss for 3 years to explain this. It has always, always been 1 step forward 2 steps back with lifting for me.1 -
Slightly OT, but can anyone who takes the biologics answer a question? I currently take methotrexate but as I can only cope with a low dose, and have "failed" other DMARDS, I'm going to be taking an etanercept biosimilar alongside the methotrexate.
Anyway, the question is, do the biologics help with the incessant fatigue? I'm experiencing a flare which is knocking me for six and I'm so tired, it's unbelievable. I just want everything under control and to be pain-free. I think that I just want someone to give me a glimmer of hope and say that it may help - I know that we're all different and we all react differently to different drugs. My consultant has been promising me for months that each drug I take will "sort things out" but ten months later, I'm worse than I was before starting the DMARDS and I despair of ever feeling like normal me again 0
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