Flare from stretching??? : Hello lovelies! Weird... - LUPUS UK


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Flare from stretching???

katidid profile image

Hello lovelies!

Weird thing happened. I had knee surgery and part of rehab is a hardcore stretching program. It’s about 1.5 hours per session at least 3-4 days a week. It’s similar to dancer type stretching with lots of active motions and really pushing things to the limit. However, it’s not “hard” per se.

The last two times I FLARED so badly not only did everything hurt and burn (even my finger tips!) but my Fog was super bad and my emotions all over the place. I had to go into black out mode and warn my dear husband to just leave me be.

Has anyone ever experienced this?? Never happens with regular excercise, just when I try and lengthen everything out.

Advice plz ❤️

3 Replies

Oh my gosh yes, I flare with exercise and even yoga which might be similar to the stretching you have to do. I’m not sure why stretching would bring on a flare for you and general exercise wouldn’t though. Maybe it’s because 1.5 hours is quite a long session. Would you normally exercise for 1.5 hours?

I haven’t been able to exercise for such a long time because when I do, I feel very achy and fatigued for days afterwards. This is even if i haven’t really done that much e.g. a fast paced walk around the block. I’ve been on hydroxychloroquine for 3.5 weeks and I’m hoping I’ll be able to take on a bit more exercise once it kicks in.

katidid profile image
katidid in reply to 123MrsG

My fitness history is a mixed bag. I was a competitive athlete for about 17 years and retired dancer. As I got older I picked up running, cycling, cross training, plyometrics, etc. Moving was my zen and one of the only things I really enjoy. Because of that, my muscles are a little different. They are short and tense. So, stretching is a long and hard processes for me. When my Spondylitis kicked in, it became a nightmare to stretch - sooooooo much pain - but yet I could still be active and work out up to about 2 hours a day. I say this will all seriousness, it literally takes my body like 45 minutes just to warm up. Now I use hot showers and lots of layers b/c I just can’t do 45 min. When the Lupus overlap started, my body just fell apart. I lost most of the muscle mass and strength I had built over 30+ years. My lungs and heart got weak and my joints … well you probably know! My joints are just a hot mess.

For awhile I took to walking in a pool and doing some basic exercises that didn’t require exertion. Last year, I picked up Pilates (the machine kind) as I found a place that specializes in injured people and rehab for chronic conditions including joint, pain and fatigue issues. It’s been great. When I’m up for it, I go three times a week and they adapt the workout to account for my energy and pain levels.

But then I had knee surgery (because of that 30 years of banging on my knees! Oops). And now I have 1.5 hours of “physical therapy” plus 3-4 days a week of this ridiculously long stretching. I feel like a dancer again - but not in a good way!!

The type of stretching is rigorous and maybe it’s just pushing my body too far. It also makes me incredibly sick to my stomach.

I think I am going to maybe break it into smaller sessions or just ask for an alternative. This is day 3 in bed because of it :(

Thanks for responding :)

in reply to katidid

Do you have Ehlers Danlos Hypermobiliy Disorder by any chance?

Anyway I don’t know if this helps but my neuro explained that some people, regardless of autoimmunity, are very sensitive to stretching re sympathetic nervous system. She said this when I was explaining that I only have tremors, syncope, dizziness and intense neuropathic pain when I’m ill with UTIs or viruses, allergies or respiratory tract issues.

When I used to do tai chi the instructor had us standing still listening to him monologuing for long stretches and this was when my Raynaud’s started and I’d get terrible flares in my wrists and knuckles often. It didn’t really make sense to me at all back then and I blamed it being the day after my Methotrexate. Now I think it’s when I get cold.

I think I have EDS although unconfirmed. At least I discovered from a great Pilates instructor and former physio that I’m hypermobile.

Anyway I think the stress of standing still in a cold room triggered my tremors and proprioception issues, which in turn triggered my autoimmune flares. Only guesswork gleaned from lived experience though! 🤷🏼‍♀️😊

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