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Frustrated with Doctors' Lack of Knowledge on RSD/CRPS

Cat5

676d

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.

2

7

7

Reflex sympathetic dystrophy

Ketamine

Osteoarthritis (OA)

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Top reply
    • MinouBallerine

      504d

      @Cat.Mom it sux when YOU have to explain your condition to docs and nurses. The fact that RSD has now been considered worse than stage 4 cancer pain on the recognised pain scale, does not help most of us, bc majority of medical professionals are unaware of condition to begin with. I dream of undergoing the IV Ketamine coma treatment, wondering whether I could have 5 years of pain free years or could it last a lifetime…? If I ever have100K to burn, I know what I am doing with it!

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    • Cat5

      676d

      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.

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      • Cat.Mom

        522d

        @Cat5 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.

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        • MinouBallerine

          504d

          @Cat.Mom it sux when YOU have to explain your condition to docs and nurses. The fact that RSD has now been considered worse than stage 4 cancer pain on the recognised pain scale, does not help most of us, bc majority of medical professionals are unaware of condition to begin with. I dream of undergoing the IV Ketamine coma treatment, wondering whether I could have 5 years of pain free years or could it last a lifetime…? If I ever have100K to burn, I know what I am doing with it!

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      • MinouBallerine

        555d

        @Cat5 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.

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    • Cat.Mom

      676d

      🙏 ❤️ 🙏 ❤️

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    • Cat.Mom

      676d

      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.

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    • Bonbon2u

      676d

      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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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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