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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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#1 | ||
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Senior Member
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What I think you should do........
~Print out some articles on RSD showing that it can spread. ~Take them to your next appt and show them to your new PA ~Discuss that some of her past statements have led you to suspect she is not up to date with her RSD knowledge, so you want to know how you can guarantee an appropriate/aggressive plan of care to manage your symptoms. Perhaps she could suggest a clinician in that practice who is more knowledgable able RSD. That plan is easier said than done. I worked as an RN and spent 20+ years advocating for my patients. I find it difficult to do that for myself. Too many years feeling belittled by health care 'professionals' who told me RSD was all in my head, that I didn't need any meds (I'm not referring just to the narcotics which I now use and find helpful, but also the Neurontin, Cymbalta, Nortriptyline, Feldene, and steroid injections which have helped me so much with my pain management.), that I just needed more exercise (weight lifting, which made my symptoms worse), etc, etc I believe many of us could benefit from having an advocate there with us to help us stick up for ourselves. Good luck, Tedd.
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"Thanks for this!" says: | Tedd (12-19-2012) |
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#2 | ||
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Junior Member
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I find that many healthcare providers want us to ditch the assistive devices and just move on with life. Yet they are unwilling or unable to help us get to that point! This is something that has been on my mind lately.
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"Thanks for this!" says: | Tedd (12-19-2012) |
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#3 | ||
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Magnate
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It's tricky being dependent on a health care provider for meds that are essential and strictly controlled that you don't trust, on top of all the other issues. I'd say it's best to find an experienced RSD doc then try to train one yourself. It's a huge time commitment for them to learn more than the basics, and it's also an ongoing time commitment. If you have a doc that's knowledgable about RSD, and see a PA every other month to just write scripts, that could be workable, but otherwise, you might want to start researching other options. Make sure you're new doc will be comfortable writing rx for your current meds before jumping ship, though.
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"Thanks for this!" says: | Tedd (12-19-2012) |
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