Pain after too much walking, EDS, advice?

Posted by emmabell @emmabell, Aug 8, 2023

I have Eds, quite newly diagnosed and I haven’t been offered any treatment yet (long, sad story). I’m on a waiting list and it takes time.

I normally just walk slowly around the house, to the bathroom, kitchen etc. I can’t go outside.

But today I saw two deer in the garden and I got so excited. I stepped outside and walked through the garden. Then I felt my hips started hurting and getting tense and realized I also had to get back to the house.

I barely made it, it was further than I’ve walked for years and I overdid it. My hips are so sore now and aching and I struggle to walk at all now.

What do I do? Rest? I took a naproxen… is that good or would some muscle relaxant be better? Anything to help heal?

Thank you!

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I had no idea what EDS a was so of course I had to Google. I found this article, https://news.tulane.edu/pr/could-vitamin-deficiency-cause-%E2%80%98double-jointedness%E2%80%99-and-troubling-connective-tissue-disorder from Tulane, where interestingly, they have the only clinic for EDS in the USA.
Hugs and thoughts to you.

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Slow at first, pace yourself. I was once in your shoes. There are good days and bad days. Walk around the house as you can and maybe try to increase your walking for just 1 minute a day. I have found that ibuprofen is good as long as it’s just to decrease the inflammation. Ice, heat, epsom salt baths are amazing!

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Compression really helps.
Calf compression sleeves and leggings (mine go up to bra.) The leggings compression holds you together. Also I work hard to excersice. It's awful for me when starting. I just had to take a 2 week break from exercise and it was torture to start again. Worse the longer you haven't exercised. There are protocols for excersice and EDS you can look up. Possible but rare to find a physical therapist that knows how to help. If you have vEDS be under an MDs care that understands it. Rheumatology or geneticist.

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Thank you guys for these tips. My hips are really unhappy now, so I try and rest for now and I hope the pain will ease off a bit eventually and then I will have to slowly start moving a little again. But I learned a lesson for sure *cries*

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I had hips that got readjusted every week by my PT guy! Finally found Regenerative Medicine and the fact that my hypermobile SI Joint had stretched out a ligament, the illiopsoas, which could no longer do its job between my backbone and the pelvis .... Prolotherapy returned the strength to the ligament and my walking was again OK.
In addition to CBD I found an aid to keep the hips in place while I walked ... from a former NBA player, JBITMedPro. The wrap around help, with attachments to the feet, held my hips in place and made walking easy!
Here are 2 olaces for info ... http://www.nashvilleprolotherapy.com and http://www.AlanSpanosMD.com. Ligaments got lost in the diagnosis process for several reasons as
Dr. Johnson ways. unless they were torn and thought to require surgery.

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rjmtwit, was prolotherapy painful? Do you mind recounting your experience? I appreciate your post.

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@gently

rjmtwit, was prolotherapy painful? Do you mind recounting your experience? I appreciate your post.

Jump to this post

Prolotherapy is not particularly painful. The ligament that requires fixing is given shots ... usually like sugar water ... along its whole length. Local anesthetic is used. That is it. The idea is to shock the ligament into self-healing. Sometimes our highest level of healing doesn't turn on properly so this process gets its attention.
For me the process took 10 days for the ligament to tighten and it happened at night. Popped back like a rubber band and woke me up! ... but I understand that is a bit unusual. Some people require several treatments. I suspect that has something to do with the state of our own systems.
Prolotherapy is not covered by our insurance but is certainly worth a try. As Dr. Johnson says ... to diagnosis a Lax Ligament requires physically examining it, but it is easy to feel it is lax and not able to do its job. An Xray doesn't do it!
Hope you can find healing.

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Popped back like a rubber band and woke me up! Wonderful, enticing description
I was seeing a chiropractor for the adjustment every week, then twice a week, now I want to go everyday. I want to wake up like you did. Thanks for warning me that your experience is unusual and for the well wishes.

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Hi @emmabell, in addition to the encouragement you are getting from the group, I thought I'd share the blog dedicated to EDS here on Mayo Clinic Connect as well:

- Ehlers-Danlos Syndrome Blog
https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

@emmabell, it has been almost a week since your outing and hip pain, how are things progressing for you?

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