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 02-17-2020, 08:26 AM #1
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Irish Irish is offline
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Join Date: Apr 2019
Location: Milwaukee, WI USA
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Irish Irish is offline
Junior Member
Irish's Avatar
 
Join Date: Apr 2019
Location: Milwaukee, WI USA
Posts: 19
5 yr Member
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It sounds like you have been thru hell. So even if you dont have crps, you have that in common with those of us that do. Sorry to hear of your pain and struggles. I can not offer any insight into what may be going on with your health. It does sound like you have done your research and I applaud you for being able to do that despite your challenges.
I can say from my own experience that I have never had a day of no pain since this disease started. I have had better/worse days, but none that were pain free. Most ppl with crps, myself included, can relate to your frustration with a lack of a diagnosis after being sick for so long.
I am relatively new here, so I dont know the rules all that well, but I see no harm in you posting here wondering if it could be crps. I have seen many such posts in other groups. Particularly since it is a diagnosis of exclusion and there is no test to prove it exists.
It sounded like you were on a good track until PT messed you up. That is so messed up, but happens all too often. I hope you can get back to that place you fought so hard to attain. I know how frustrating the unknown is, but I encourage you to keep looking for answers.
The Budapest criteria is the best we have right now, to my knowledge, to rule in a crps diagnosis. So if your multiple docs are saying it doesnt fit it would be prudent to look for other sources.
I sure hope someone can figure out what is going on in your body and provide you with some relief. Glad to hear it sounds like you have a great, supportive husband.
Hoping you will find some answers.
Barb
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InPain1234 (02-18-2020)
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