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 05-27-2012, 08:32 PM #11
KathrynL KathrynL is offline
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Quote:
Originally Posted by LIT LOVE View Post
I noticed your other post in the remission thread and it reminded me--if you're not currently on a course of steroids, that would be a good idea as well. I can't remember if I did or not, but I always have them in for flares, travel, etc. If it's the kind that builds up, you want to be at the strongest dosage the day of the test. If the packs starts at the highest dosage, start it the morning of the test, etc.

And since I'm having a weird flare myself, this was a good reminder for me as well! One of those Homer Simpson "doh!" moments.
I'm not on prednisone right now. They tried it at the beginning of this bout of RSD, but I was non-responsive. I was on a blast for about 2 weeks, but it's over now. While there's some swelling with this round of RSD, there's not as much as there was with my foot the first time I had RSD. Both my neurologist and my rheumatologist (who first diagnosed my RSD in 2003) are dealing with the RSD. I like my rheumatologist more and he's more accessible, so maybe I'll ask him about giving me prednisone for the nerve conduction test.

Also, you mentioned break through pain meds. What are those?

Since I can't drive in general, I do have a driver so I don't have to worry about that. The hospital where I'm having the test is about an hour away, so there's no way I'd make it alone. The joys of living in a rural state.
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Old 05-27-2012, 08:41 PM #12
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I take time released opiates (Kadian) and immediate release opiates (MSIR). I was a hot mess afterwards...but luckily was 10 minutes from home. (Driving with that level of pain would have been more dangerous than the meds.) Take a max dose of your fastest reacting pain killer as soon as it's over.
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Old 05-27-2012, 08:43 PM #13
KathrynL KathrynL is offline
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I think Tylox is the strongest painkiller I have.
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Old 05-27-2012, 09:19 PM #14
ballerina ballerina is offline
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I was one of those who was pressured by my short term disability to have some documentation regarding my diagnosis. When the Neuro insisted on doing this test I refused, even though he suggested that I would not have "documentation" to satisfy my short term disability insurance.

My response was to immediately found another Neuro who I still see today who detailed in my records the high risk of spreading my CRPS with this test.

CRPS is a clinical diagnosis. Carefully documented medical records always trump a specific test. Please do not feel forced into this test. Failure to have this test done will not cause you to lose your short term disability.

If your doc has suggested or implied this find another. About the only thing we have going for us as patients is the ability to protect ourselves from risky procedures and treatments.

The only thing I can think of that is more threatening and frightening than the risk of losing financial security by feeling forced to undergo a risky test is facing a possible spread.

Please take a minute to read the tDCS thread. Since you have such a fresh case you may be able kick it back into remission if it is truly a return of CRPS.

Hoping better days are ahead for you!

Last edited by ballerina; 05-27-2012 at 11:02 PM.
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Old 05-27-2012, 09:21 PM #15
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Default Hi Kathrynl

I can't tell you what to do regarding the test. I can only tell you that for me personnaly I would not take that test. If there was some other dianostic test they can do, like biopsy, I would do all else first. It would take alot of convincing for me. My problems were addressed without this test, after going to another physician. I am not a wimp, but this particular test is not one I would willing do, unless it was best doctor in the world, being compassionate and telling me how much I need it. Let them try this test first, and then tell you to go through with it. I am sorry not to be so brave, many others did just fine with it, and many others have had to endure so much more pain with diagnostics. I try all the others ways first, before submitting to painful procedures. I slide by all I can....well maybe I am a bit of a wimp. ginnie
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Old 05-27-2012, 10:35 PM #16
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WC rules differ by state. The result of how refusing a diagnostic test will differ greatly based upon many factors. In CA, your primary care doc absolutely has the power to change your status from TTD to P&S, for ANY reason. This can mean an end of income, but it can also put the breaks on moving forward with potential treatment, and/or receiving medications. Many states have very strict rules in place that prevents the injured worker from switching docs. (In part, so that the IW can't doc swap when they're status is changed to P&S.)

If the OP can avoid (or postpone) the test, that is clearly preferred. But, the only person she should trust that it won't effect her WC case, would be her attorney (if she has one.)

In my case, it wasn't my primary, but an IWE. Once agreed upon ahead of time by both parties, you're stuck with them. If I had experienced past episodes of spread from similar procedures, I would have refused. Since I've had no long term pain other than the original RSD site, I was not too worried. My flares have responded quite well to meds. I had a plan in place with my PC, if the worst case scenario happened. Etc. Was it a difficult decision that required significant consideration? Of course.
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Old 05-27-2012, 11:03 PM #17
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I had 4 nerve conduction tests.. all with varying results. I had 2 nuclear bone scans. with equal results then the triphase bone scan. plus a truck load of mri,s and X-rays.. the try phase scan is what got me the dx of red. the rest only showed what they already knew.. so if this helps ..
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Old 05-27-2012, 11:15 PM #18
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I had a triphase bone scan during my first diagnosis with RSD in 2003 which clinched the RSD diagnosis for me (after multitudes of blood tests and xrays).

I'm a little concerned I'm already experiencing spread in my right arm. I'm starting to feel burning in my right shoulder and upper arm and intermittent prickling pain in my right hand. This is how the RSD started in my left arm. It's not anywhere near as intense as my left definite RSD arm. I'm not sure if I'm just being paranoid and I'm in so much pain that it feels like it's in the right arm, or it's starting to mirror.
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