Frustrated with Doctors' Lack of Knowledge on RSD/CRPS

I'm frustrated with how little my doctor's over the years have known about RSD/CRPS. I know more from internet research. Now that my disease is progressing somewhat and with other conditions going on I don't know how to differentiate between one or another of these conditions symptom wise.

Your answer

Cat5

2y ago

EXACTLY! Most don't know what it is. I, too, have severe osteoarthritis and also degenerative disc disease. I don't know how to tell if new symptoms are from one or all of these. Is there such a thing as an RSD/CRPS specialist? Worth looking into maybe.

Cat.Mom

1y ago

yes there are but no where near me. When I was first diagnosed nine of the doctors I saw even knew what .rsd/crps was it was disappointing.

MinouBallerine

1y ago

same here… new debilitating pain strikes and I am always trying to figure out whether it is from all of my spinal dysfunction? CRPS? Fibro? Or something new altogether?!?! Docs do not know what to do with me… the neurological stim failed for me… I had it implanted and 4-5 years finally had it removed. When stim was on, felt as if I was being broiled from inside out. The CRPS specialist I use to see was considered 2nd or 3rd best in country. He gave up on me when stim failed…. I eventually found a palliative care doc who was willing to take me on (thankfully). I do have heard of two that are supposed to be THE docs in the US and one is Dr. Robert Schwartzman @ Penn & Drexel and the other is @ Johns Hopkins I think.

Cat.Mom

2y ago

🙏 ❤️ 🙏 ❤️

Cat.Mom

2y ago

I have fibromyalgia an CRPS an severe osteoarthritis in many t places. That’s my problem as well trying to sort them out so I can work on each. It is difficult when I asked my rheumatologist what was some differences he responded does it matter they both about the same. That was the last time I went to him. An I have learned more from internet than any doctor. In fact I have to explain what CRPS /RSD is cuz they don’t know.

Bonbon2u

2y ago

That is the hardest part, been diagnosed since 2008, it's a roller coaster ride. You will be able to tell the difference

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