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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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03-15-2019, 09:36 AM | #1 | ||
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Becca71, My experience and opinion matches what you posted. Also, I get great sleep....GREAT SLEEP.....and most of the time. Sure, there are those nights we all have, but I am self employed and able to catch up when they happen and after I get symptoms under control. Then, for the rest of the time, I sleep until I wake up, which is usually around 9 hours each night (my meds sort of knock me out, Im sure, but regardless, I sleep like the dead!).
And....I have those symptoms you mentioned (cognitive, all of them). Its strange to me that for those with Fibromyalgia, they call it "fibrofog" and it's widely accepted as a part of that condition. I have heard some doctors say that CRPS is an extremely advanced case of Fibromyalgia, and while I have no idea if they're right or not, this part of Fibromyalgia is also experienced by those of us with CRPS. I was diagnosed with Fibromyalgia long before I got the CRPS, fwiw....and I have no idea if I have both conditions, because the CRPS overrides the Fibro and has since day 1 of having it....I never think about Fibro anymore even though my entire body hurts....but in all limbs I have the CRPS, so I do wonder when some CRPS doctors say the two are related. |
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03-15-2019, 11:53 PM | #2 | |||
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I developed Fibro a couple years after CRPS. There were some differences, IMO, but the pain was certainly not anywhere near the level of the CRPS. For me it was that the joints would hurt all over my body, while my CRPS is limited to my right foot and leg. And I would feel physically like I had been knocked down with the flu, without actually being sick. And each time it happened I would get a weird mild rash on my cheeks and neck. Etc.
I have also heard that CRPS and Fibro may be related. But heck, there is so much that they don't know about both conditions, other than they are both nerve conditions. |
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03-25-2019, 11:06 AM | #3 | ||
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After 6 years with CRPS I finally decided to look for a Dr who is a CRPS specialist. I've found that the pain management Drs I went to were just trying to prescribe something to cover up the pain, rather than to look for ways to manage the cause. I'm near John Hopkins in Baltimore, so I searched their website for CRPS and found Dr Raja. Only one visit so far but much better experience than going to another pain management place. He put me on Pamelor, which has been very helpful (for me) so far.
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04-02-2019, 11:17 AM | #4 | |||
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Quote:
Now we're all different, but I have to tell you anti-depressants never worked for me; they didn't touch the pain whatsoever. I only gained about 10kg on them which is weight I could miss for my knee issue!
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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04-08-2019, 02:37 PM | #5 | ||
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CRPS is the worst, isn't it? Then, the fibromyalgia on top, or is it? I see so many people with both, and I read an article earlier today that talked about pain studies (this outfit is in Australia, fwiw). They are studying the brain, and have, among other things, linked the frontal cortex and GABA and, they talked about how cognitive is affected by CRPS, which is my experience, too.
I just really often do think CRPS and Fibromyalgia are linked, it all goes to the spine and the brain, and because so much is unknown, we do get really varied responses from various doctors. One of my doctors said patients often know more about the disease and the symptoms because we talk to each other so much, and doctors could learn from the busy bees among us, lol....(scary, isn't it....we just dont know enough about this dreadful disease!) |
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04-09-2019, 10:47 AM | #6 | |||
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Oh I agree, patients know more about it than doctors a lot of the time! And I have Fibro too, I was diagnosed about two years in. I have read that they are related in some way. Both relating to overreactions of the nervous system.
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"Thanks for this!" says: | BioBased (04-23-2019) |
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