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 11-09-2014, 11:16 AM #11
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Originally Posted by catra121 View Post
Just my opinion...but given your negative response in other areas I would strongly recommend against the use of ice anywhere else. Short term numbing might feel okay at the time...but the long term results of use could be a disaster. Like I said before...my own experience after being told to ice my initial RSD site for months was that it made things worse and caused the condition to progress faster (and greatly lessened the likelihood of remission once I finally got the treatments I needed). Much better in my opinion to play it safe and work towards remission in those areas that aren't as bad vs taking the risk of potentially sabotaging your chances at remission through the use of ice now. Not trying to scare you...but that's how I view things especially in your situation where the ice DOES negatively affect you in the worst areas.
Wow, thanks for saying that. I didn't make the connection from your earlier comment. I will sadly banish ice. I say sadly because it was the only thing that helped to relieve some of the flames flying off my shoulder blade.
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Old 11-09-2014, 01:16 PM #12
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Wow, thanks for saying that. I didn't make the connection from your earlier comment. I will sadly banish ice. I say sadly because it was the only thing that helped to relieve some of the flames flying off my shoulder blade.
It is a sad thing. I got a really bad muscle strain in my shoulder at the end of September and unfortunately ice is one of the primary treatments...and I can't use ice so it has been a longer recovery period than I would have liked. Until you can't use ice...you don't realize how much it is used for. Trying to get the pain under control is such a long, slow process sometimes...especially when you are limited in what you can try. Avoid the ice and avoid immobilization...everything beyond that is going to be trial and error...and a slow process of figuring out how much to push yourself without pushing too far. Such a balancing act...I get so frustrated by it sometimes that I just want to scream...but that's my life now. I hope you find something soon that can help you with the pain. Hugs.
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Old 11-10-2014, 11:33 AM #13
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Thanks Zooster. Can you say more please. Does the uv protection clothing stop the pain, (a laser defense system, so to speak ) or prevent further harm?
Hey ShaggyChic,

lol.. I feel so connected to you because you are the first person to ever describe that sun through the window thing that I so dread in the summer time. haha.. we are soul mates Anyways yes, the UV clothing has seemed to reduce the laser feeling and more importantly it has kept the rash at bay that usually forms with any sun exposure. My doctors refer to it as livedo reticularis a lace like rash under the skin or a vascular rash. I don't have it on my upper body just my legs and because of tactile stimulation causing great pain, I only wear leggins or yoga type pants because the even pressure is much less painful than the tapping of loose fitting clothing. I have found Athleta, REI and Patagonia (and I'm sure others) have a good assortment of the type of UV protected clothing that has textures I can tolerate. I have since started wearing the shirts with UV protection just as a precaution/prevention. It's weird because most people I have spoken to either have sensitivity to cold or heat but few both.. so this has been an added challenge trying to find middle ground.

Regarding ice therapy - for me it seems quite logical that ice would cause problems since our blood flow is compromised by CRPS and using ice would only make this worse. I was also formerly a mountain climber and have seem many people lose fingers and have subsequent neuropathy due to frost bite so it makes sense to me. Personally I have found that the use of moist heat works best even though my legs burn constantly the moist heat is still more soothing than anything else I have found. Warm epsom salt baths also really help when pain is severe and the magnesium in it is very beneficial to the body for a number of reasons.

I hope this helps,
Tessa
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