support for those working out with autoimmune issues
Replies
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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 -
Madwife2009 wrote: »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
For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).0 -
singingflutelady wrote: »
For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).
Sorry to hear this, that seems horrendous! Hope that the wound heals quickly for you.
They are putting me on benepali (etanercept) which is a sub-cut injection once a week. I hate all of this. I've been in and out of hospitals. had more tests and taken more medications over the last year than I've had during my entire life (including four pregnancies). It's ridiculous that it all kicked off just after I decided to do something about my unhealthy lifestyle
Yes, I'm still feeling sorry for myself, a year after diagnosis. I'll get over it, no doubt, once it's under control.
Bleugh.0 -
Madwife2009 wrote: »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
I'm on Humira. I think it does help.0 -
Madwife2009 wrote: »singingflutelady wrote: »
For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).
Sorry to hear this, that seems horrendous! Hope that the wound heals quickly for you.
They are putting me on benepali (etanercept) which is a sub-cut injection once a week. I hate all of this. I've been in and out of hospitals. had more tests and taken more medications over the last year than I've had during my entire life (including four pregnancies). It's ridiculous that it all kicked off just after I decided to do something about my unhealthy lifestyle
Yes, I'm still feeling sorry for myself, a year after diagnosis. I'll get over it, no doubt, once it's under control.
Bleugh.
It's ok to feel sorry for yourself. I'm 2.5 years out from my diagnosis (Crohn's) and incredibly bitter that I had to have a total proctocolectomy with end ileostomy (colon, rectum and *kitten* removed) because of a crohn's complication (nasty fistulas) that I developed 1 month after diagnosis but my GI basically blew them off. Maybe if I had been sent to a surgeon earlier I could have had a simple repair. My disease was basically under control when i had surgery so it sucks to lose all that when it actually isn't so bad (except the fistulas of course)Oh well. I'm angry at my GI and hope he learned from my case but since he's still my Dr I have forgiven him.
I should add that when I became deathly I'll I was very fit. Best shape of my life. 2 weeks before I ended up in the hospital for 34 days on TPN right at diagnosis I was deadlifting 2x bodyweight. In the hospital I couldn't even squat down to pick anything off of the floor without assistance. It was a shocker.0 -
Madwife2009 wrote: »singingflutelady wrote: »
For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).
Sorry to hear this, that seems horrendous! Hope that the wound heals quickly for you.
They are putting me on benepali (etanercept) which is a sub-cut injection once a week. I hate all of this. I've been in and out of hospitals. had more tests and taken more medications over the last year than I've had during my entire life (including four pregnancies). It's ridiculous that it all kicked off just after I decided to do something about my unhealthy lifestyle
Yes, I'm still feeling sorry for myself, a year after diagnosis. I'll get over it, no doubt, once it's under control.
Bleugh.
I can relate to this; my ulcerative colitis started when I gave up smoking. Was bitter about it for a while but eventually you accept that life isn't fair and you move on.
Re your question about biologicals. I'm on vedolizumab (entyvio ) and gut wise am more or less in remission, but other manifestations of the disease, like fatigue and joint pain, are still there I'm afraid. In fact if anything, they are worse but I don't know if that's just because they seem more noticeable now that gut symptoms have receded.0 -
Hello everyone! I really was in need of finding this post today. I recently got diagnosed with Hashimoto's in January this year and have been struggling, I also have endometriosis and I have had that since 2009.
My endocrinologist wants me to loose weight, as do I. I'm currently over 100 pounds overweight. Second visit with my endocrinologist she gave me a script for phenteramine, which I didn't take and was able to loose 10 lbs on my own. She was pleased and I went on my way. We have been trying to get pregnant and the endo. is like laser focused on that and how my weight is an issue.
Shes convinced that she thinks I have PCOS. I had a transvaginal US earlier this year (for the endometriosis) and I had ZERO cysts on my ovaries, in fact I got a clean bill of health and the OBGYN said everything looked good.
I have a visit with her again at the end of September and she mentioned putting me on metformin. Im having a hard time with it, seeing that Im a nurse, and I dont have PCOS. Metformin can cause liver damage and I feel like she is so easy peasy with prescribing pills to fix things. I just need more time, the weight just dosent come off as easy as it used to!
Anyone have any tips for me? Anyone else with Hashi's find a way it works to help loose weight? I have heard low carb, gluten free, keto, whole 30.... etc. But Im not sure about if any of those are worth looking into.
I walk a lot at work, and I try to at least get 3x week in for exercise, recently its been on my bike, but I am able to do whatever (zumba, HIIT, walk, cant run - knee injury)
Currently my diet is 1750 cal/day and ratio is carbs 40%, Fat 30%, protien 30%
ANY HELP, would be greatly appreciated!0 -
I have Hashi's and lose weight just like anyone else if my thyroid is adjusted to optimal levels for me.
Your endo might not have you there. How are your symptoms? Is your endo adjusting you to numbers or symptoms? Did she run a complete thyroid panel? What was your last TSH?
I'm asking you this because it becomes important to know where your optimal TSH reading is. I could test within normal optimum range (I believe this is now .2 - 2.0, @CSARdiver can correct me), but I personally know that I feel best when my own number is well below 1.
My endo knows this too, so we know to keep me on the low side. She also knows to treat patients based on symptoms, not numbers.
Saying all of this, once you are treated properly on a dosage that's best for your symptoms, you should be able to lose weight like anyone else, on a diet of any macro balance of your chosing, by accurately counting calories and doing reasonable exercise as you see fit.1 -
I just got the call that I switched from hypothyroid for 15 years to Hashimotos. Two of my coworkers have it as well and one said when she does whole 30 or gluten free she notices a huge decrease in fatigue. I still love my fries and pasta, but I might try to eat a gluten free meal here and there now to see if it helps. I have 0 kids and my husband and I plan to start trying here in about 7 months (cruise to Zika territory next month). So now I am super worried about fertility issues. I am 5'3 with a very small frame so I should probably weigh around 110, but I have always been 128-140 yo-yoer. I have lost about 15lbs in the past two months and associated my symptoms these past 3 weeks to donating blood, diet, starting birth control again (no TOM for cruise), and marathon training. Very frustrating to find out it's my stupid thyroid0
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GottaBurnEmAll wrote: »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.
never got back to you about this. i guess i can't answer for you, and i don't even know for sure that r.a. is why i have this completely inconsistent pattern of biofeedback. but i know that i have it and it is holding me back.
and i do know that of all the various people i know who also lift, i'm the only one who seems to experience this to the degree that i do. working with a 'club' where i'm watching other people's progress patterns over a long period is discouraging in one way.
but on the other it's also a little bit of a comfort, because at least i get to feel sure that i'm not wrong to think i'm atypical. i don't think i know anybody who thinks as much as i do about the micro-details of lifting, or who is as right as i am as much of the time, about when and why something's off.
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I have had an auto-immune for @ 5 yrs. IGA Deficiency. Last week I was diagnosed with another, Sjogrens. I had to fight for almost 4 years to get the tests and referrals I needed, but finally paid off. Saw an RA doc and she hit it spot on. She put me on Plaquenil and a week later I am already feeling improvement. Don't give up!0
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demoiselle2014 wrote: »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?
I have sjogrens too, as well as raynauds and hashimotos disease. I refuse to give up, I feel as long as I keep moving I can stay active.0 -
Madwife2009 wrote: »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 againMadwife2009 wrote: »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
Sadly no 😢. I’ve been on Biologics for probably 14 years, I’ve been on 4 different ones. Initially they’ve helped with pain but not fatigue. I’ve not been in remission now for around a year and have just started JAC’s that are not currently working and I hate giving in. But I push myself to work out at least 3 times a week including strength/ weight training but it’s hard. I road bike too but sometimes have to stop the distance rides.0
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