Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 08-11-2016, 07:05 PM #1
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Whiteaa,

I am attaching an article on spreading and CRPS that I found interesting. It has been about year since I read it but it had helpful information.

Spreading of complex regional pain syndrome: not a random process

I had mirror pain in my unaffected ankle but no upward spread originally. However as my pain decreased and I made progress that resolved entirely. We had at least one poster in the past mention HBOT, hyperbarics for helping reverse/reduce spread and I have seen research data correlating that.

Remember the key here is plasticity. Take good care of yourself, don't push your limits too hard and reduce pain contributors you can control. It is easy to overdo so I am wondering if your gymnastics routine (though exercise is great) needs to be re-evaluated as you are dealing with this. Also, be sure you are not minimizing any potential injuries or strains that could be contributing.

I hope you feel better soon,
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Old 08-11-2016, 09:18 PM #2
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Quote:
Originally Posted by Littlepaw View Post
Whiteaa,

I am attaching an article on spreading and CRPS that I found interesting. It has been about year since I read it but it had helpful information.

Spreading of complex regional pain syndrome: not a random process

I had mirror pain in my unaffected ankle but no upward spread originally. However as my pain decreased and I made progress that resolved entirely. We had at least one poster in the past mention HBOT, hyperbarics for helping reverse/reduce spread and I have seen research data correlating that.

Remember the key here is plasticity. Take good care of yourself, don't push your limits too hard and reduce pain contributors you can control. It is easy to overdo so I am wondering if your gymnastics routine (though exercise is great) needs to be re-evaluated as you are dealing with this. Also, be sure you are not minimizing any potential injuries or strains that could be contributing.

I hope you feel better soon,
Thanks Littlepaw! I'll look more into hyperbarics. It has seemed up to this point that my mirror pain is here to stay. It's so similar I once had to remind myself which was the original pain. It would be awesome if I could find a way to at least prevent further spread.
As for the gymnastics, I've become pro at telling between normal sports pain and CRPS-is-mad pain and I have awesomely understanding coaches who immediately accept when I say I can't do something. I actually think it has helped me manage the pain quite a bit!!! I've used it to gain back so much mobility!

Thank you again so much for this article!
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Old 08-11-2016, 11:10 PM #3
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Once you have it the slightest trauma anywhere on the body can cause it to start there or nearby
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Old 08-12-2016, 08:05 AM #4
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hi whiteaa. i am so sorry you have rsd and spread. i am so sorry that all of you have rsd and spread. my rsd started in right arm and slowly spread down right leg to left arm to left leg to face to stomach. i get burning, swelling, excessive hair growth on arms and legs, cold, shiny, thin skin. lack of mobility and bone thinning because of rsd. i also get sick more easily. i am a 5 and 1/2 rsd survivor.
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Old 08-12-2016, 11:01 AM #5
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Whiteaa,

I am glad the gymnastics are doing you good. I too have had a good response to exercise and feel it has positively impacted my improvement I just have to be careful and still try new things at a greatly reduced pace before slowly increasing the work. I just wanted to make sure you weren't getting carried away . I notice for myself that if I have sports aggravation my CRPS symptoms can increase so I just pull back a little till they settle.

Kevscar,

My PM made a point to tell me that if I had trauma or surgery anywhere that my symptoms could come back like they were originally. That is a daunting possibility. Surgery seems especially concerning but other trauma may as Catra said depend on degree and the individual. Recently I knocked the heck outta my affected leg on a pointed metal bar on a bed frame that was sticking out too far. Of course I had to hit it right where the superficial peroneal nerve is most easily dinged near the shin. I had that awful sensation like hitting your funny bone. I bruised badly and had some weird nervy symptoms for about a week. My approach was to rest, elevate, use arnica on the bruise, do gentle stretching, take Vit C and try to keep my stress and worry down. Easier said than done! Thankfully it resolved and I am not having any new pain. Funny, I got through that but getting my IV for ketamine makes me nervous every time.

I hope we can all take the knocks life throws us without worsening!
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