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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

[QUOTE=FunFact;5437606]Just registered to help answer your question.

I suffer from RSD in the left lower extremity - from my toes up through entire leg.

In MY experience, yes, I do suffer with angioedema - I DO have deep tissue swelling (for no other reason than the RSD/CRPS). Some days the appearance and the swelling are worse than others. Sometimes the skin appears extremely blotchy, similar to someone with Raynaud's phenomenon. My swelling is visible to others and it "moves" throughout my entire limb. Sometimes it's more pronounced in the foot, other times it's visible from foot to above the knee and the skin appears shiny. Then there are other days where the swelling is not as pronounced or outwardly apparent to others.

I do feel tissue swelling and it feels as if the tissues are being inflated and stretched like a balloon. I don't know if my description makes sense, but if you've ever consumed a lot of sodium and experienced the feeling of extreme fluid retention, that would be another way I would describe that particular sensation.

THANKFULLY, I have a physical therapist, surgeon and pain mgmt specialist who are all versed in RSD/CRPS and were able to put together the symptoms I was experiencing (and not necessarily experiencing all at the same time) and recognized it for the beast that it is. The reason this is important is that RSD patients may not exhibit every major symptom at the same time, if at all. And the sooner it's diagnosed and treatments begin, the better the chances of remission or downregulating.

Mind telling me what other symptoms, if any, you described to the pain management specialist or the symptoms your MD noted with which the PM MD disagreed? I truly hope you do not have to contend with RSD![/QUOTE]

Thank you so much, the full body angioedema is gone (thankfully), it was an allergic reaction to my copper IUD.

The other symptoms my doctor was concerned about are the angioedema in my ankle, a constant burning pain that feels like my leg was doused in gasoline and lit on fire, the hypersensitivity to touch and pain, a loss of temperature sensation, and numbness in some portions of the affected leg. The symptoms started literally the day after my ankle reconstruction.

The pain management doctor said it wasn't CRPS/RSD because I did not have changes to my skin, gave me a lidocaine cream and walked out. By that point I had already tried gabbapentin, which didn't work, I was recently put on lyrica, which has worked wonders to control the constant burning pain, and I did months of desensitization therapy with PT before continuing at home which has helped some as well.

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