Disability and Accessibility

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All things disability and accessibility related, and advocacy for making those things better.

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chronic pain and CRPS (lemmy.sdf.org)

submitted 1 year ago by [email protected] to c/[email protected]

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I fell down an escelator in 2015 and fractured my ankle in 4 places. Had 8 surgeries, a spinal cord stimulator, and tried ketamine infusions (had a REALLY bad reaction) and ended up having my leg amputated below the knee. Then this past December I had a total knee replacement on the other leg. I've been having severe pain in that leg and they can't figure out why. Finally it looks like I may have CRPS. I have every single symptom. It feels really good to finally have a name for the hell I've been going through for so long. I just needed to write it out. I'm basically home/bed bound except for medical appointments. I'm just tired.

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[–] [email protected] 2 points 1 year ago (1 children)

Having a label for your condition is a gratifying and important step, congratulations on finally figuring that out. Once I had a label for the source of my pain and problems, I felt I crossed a mental threshold where I could put it in a box and contain it. It was no longer an overwhelming question mark floating around. I hope this is a first step in many more improvements for you!

[–] [email protected] 2 points 1 year ago* (last edited 1 year ago)

Thanks! It really is. It feels (dare I say) validiating. I've spent so many years being told "we don't know" and one pain doctor even called me drug seeking. So I'm SO happy to start hopefully getting relief.

[–] [email protected] 2 points 1 year ago (1 children)

I don't know what to say really. I've been hesitant to engage with this place, but didn't want to leave you hanging without a reply.

I spend most of my day stuck laying in a bed or on a couch after lots of broken stuff in 2014. No one has been able to say exactly what is wrong with me as far as what didn't heal. I just can't hold posture sitting or standing for more than around one hour. I've slept doing a bad impression of a rotisserie chicken for nearly 10 years. Tired would be an understatement. I also only really go out normally for medical appointments. I can do a daily physical exercise routine. That is what has held me together so far.

[–] [email protected] 3 points 1 year ago* (last edited 1 year ago)

Thanks sorry it's taken me awhile to respond. Its been arough few days. I can relate a lot to your post. My doctors have all said structuraly you're fine we don't understand! I've been struggling to do anything except lay in bed. I have a home health aide that comes 10 hours a day 7 days a week so that's amazingly helpful. I hope you get some relief too.

[–] [email protected] 1 points 1 year ago (1 children)

There are physical therapists who specialize in CRPS/RSD. It might be worth finding one to work with your knee.

[–] [email protected] 3 points 1 year ago

Thanks! I've let my physical therapist know what's going on and hopefully she can help!

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