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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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03-22-2007, 06:55 AM | #1 | |||
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Mommy Jen I am sorry that it took so long for you to be diagnosed with lupus - and yes, it is wrong that doctors attribute everything to RSD because it's easier - it shouldn't be like that. But, unfortunatly, it is.
I have severe (full body) dystonia caused by the RSD. According to my rheum (who specialises in RSD in the UK) she sees a subset of patients with dystonia and RSD and that this group of patients makes up about 20% of her patients. It is not an official statistic, but that's what I have been told in person. Another issue with the "muscle wasting" is proprioception - if you don't know where you limb is and your brain is ignoring it then it will obviosuly not be used as much. Proprioception is due to the overwriting of brain patterns by pain signals (again, a quote from my dr - Prof Blake and Dr McCabe at the national hospital for rheumatic diseases in Bath otherwise known as the Mineral water hospital) which means the brain can't understand where your limb is and thus it is used less. This could explain why you can walk around your house but not outside as you know where you are in space as related to your house - because I bet if you moved the furniture around then you would struggle more because your brain wouldn't be able to understand where it is. Or you could just be lucky. Well... even if we are just looking at the clinical features and their possible disabling effect (ignoring mood issues/ depression/ effect of severe pain/ sensitivity etc). Osteoporosis/ bone changes --> (can be) disabling - hot bone syndrome muscle wasting/ weakness --> disabling (not always caused by lack of use) peculiar sensations --> numbness can inhibit movement not through lack of use but through loss of control of it. (this is taken from CRPS & RSD Patient information booklet - published by RSD UK in association with the neuroscience resaech group, RNHRD Bath, UK). I think we must all remeber that RSD is a very complex disorder - we are all individuals and MANY people get better from this, or at least recover to a point where their daily life is little affected by it. I will have to come back to this - my pain is too bad to do this atm and vision is going. Frogga
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03-23-2007, 12:43 AM | #2 | ||
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Thanks Jo
Quote:
Not that I know anything about thermographical problems () but you don't say if the temperature difference is higher or lower than normal. Confusingly, there seem to be three kinds of temperature symptoms in the limb - some are too hot, some too cold and others a mixture. Never seems to be just right. Usually the hot type comes on early, often presenting with redness and swelling, like a puffy sunburn. The cold type comes on at a later stage and is often accompanied by a bluish, cyanotic colouration, and dry, shiny, thin skin. I know we have many people here with both symptoms...don't know if anyone can tell you what it means - I'm not sure medical science knows that either - but perhaps people know ways of dealing with it. There are certainly some back posts about the hot, swollen condition; I would just say that, whatever you do and despite what the medics may say, if it's hot, don't use ice on it, perhaps try contrast baths (alternating cool and then warm water) immersing you arm up to the elbow. I'm not too sure that the cold state is "helpable", except to keep the limb warm at all times. BTW, if it's at the hot stage, this usually does subside eventually. I had that for at least a year. I don't have quite a "cold stage" now - 3 years on from getting RSD - but my RSD hand is thin, shiny, papery with stretched skin and is a little less pink, a slightly greyish colour. And I get bright red mottled areas on (what used to be) the fleshy areas at the base of my palm. Hope this helps! all the best! |
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03-23-2007, 02:39 AM | #3 | |||
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hi trix-- i have the icey-cold problem that turns the skin a reddish/bluish, mottled colour. at times, my palms are very red, with white splotches. the doctor says that this is caused by "vasomotor instability" and decreased "micro-circulation" associated with the RSD. the blood vessels basically go into constriction, so less blood flows into thr effected area. the skin is also thin and shiney, and feels like a bad sunburn. my fingernails have grooves in them. nerve blocks have helped with the circulation prblems, skin sensitivity, as do warm baths, gentle exercises and also a warm heating pad. sometimes, medicine can be prescribed that helps keep the blood vessels from going into vaso-spasm, such as diltiazem (cardizem is the generic). this also helped me, but i have rather low blood pressure, and had some problems with dizziness, and unfortunately, had to discontinue it.
the doctor has discussed a spinal chord stimulator. he has several patients who have had very dramatic results in their symptoms. hope this helps. brokenwings |
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03-23-2007, 04:25 PM | #4 | |||
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Hi. I haven't gotten into this thread thus far, but it seem that there is one point of clarification that I can offer.
Mommy Jen, there is as you must be aware a lot of information suggesting that RSD has an immunological component. By way of example, take a look at the following articles: 1. "Increased endothelin-1 and diminished nitric oxide levels in blister fluids of patients with intermediate cold type complex regional pain syndrome type 1," J George Groeneweg, Frank JPM Huygen, Claudia Heijmans-Antonissen, Sjoerd Niehof and Freek J Zijlstra, BMC Musculoskelet Disord. 2006; 7: 91. (demonstrating a relationship in human CRPS patients between cytokine production and diminished NO levels leading to vasoconstriction: as close to the Holy Grail as anyone is likely to come in a while, for my money at least);All of which I have previously provided links to at: http://neurotalk.psychcentral.com/sh...p?t=247&page=3 There's also another article from the Huygen's group that I've come across and will work into a thread of it's own, along with some potentially very interesting tie-ins going far afield, which I will try and post in the next couple of days. In the meantime, here's the article, Frank J.P.M. Huygen, et al, entitled "Mast cells are involved in inflammatory reactions during Complex Regional Pain Syndrome type 1," Immunology Letters 91 (2004) 147–154. A copy of the full text of the article is attached hereto. The whole point of this is to say that a lot of us have been convinced for some tome that CRSP-1 is, at lest in part, in origin, and very possibly auto-immunological as well. I know that there have been a number of thread on this and BT1 in which people were shared for information regarding their autoimmune conditions. (You may have lupus, I have some sarcoidosis.) But perhaps the most telling thing to me was a widely reported pattern of RSD remission during pregnancy. You haven't mentioned this one way or another, but perhaps it happened to you. In any event, researchers looking at an autoimmune thyroid disorder not only found a remission of symptoms during pregnancy, but a mechanism to explain it: chemical mechanisms the body produces in order to block attacks on the fetus (with it's own genetic structure) in the immune system's ongoing struggle to distinguish self from other. See, “Postpartum Autoimmune Thyroid Disease: The Potential Role of Fetal Microchimerism,” Takao Ando and Terry F. Davies, J. Clin. Endocrinol. Metab., 88: 2965–2971, 2003, the abstract for which follows: Fetal microchimerism is defined as the presence of fetal cellsUnfortunately, the article is just slightly too large to post here. I would however be happy to email a copy to anyone who wants it: just send me your email address in a pm and it will be on its way. Bottom line, I believe it's a mistake to try and draw line between RSD/CRPS and other immunologically based conditions, where a great deal of evidence suggests that we're all in the same soup. Mike Last edited by fmichael; 03-24-2007 at 12:57 AM. |
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03-23-2007, 04:38 PM | #5 | ||
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Thank you to those that answered my questions. My hands are colder than the rest of me. The skin is bright red, with mottled white patches. My arms have a sunburn like "rash"on them. They are quite swollen, and shiny. When I use them too much the "rash" that runs all the way up my arms gets really bright and hot. My upper body sweats like crazy. Then my hands turn a dusky purple colour. It is no fun at all.
Anyway gotta go daycare kid getting out of hand. |
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