maybe it's time to stop posting the personal replies back and forth -and focus on replies to trix's original post.

this is her post and her topic/question-

[trix
As you know I was recently diagnosed with RSD. I found out today that I have a 1.2 degree temperature difference from my hands to my arms, and temperature difference from my hands and arms to my chest.
What does this mean? What should I ask my Dr. for? What is my best chance for remission? I apologize for burdening you all, I just have no idea what to do now.
Tracy]

Let's take a step back and keep it on track.

thanks everyone.

Thanks Jo Hi Trix,

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!

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

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);

2. "Evidence for local inflammation in complex regional pain syndrome type 1," Frank J P M Huygen, Anke G J De Bruijn, Martha T De Bruin, J George Groeneweg, Jan Klein, and Freek J Zijistra, Mediators Inflamm. 2002 February; 11(1): 47–51;

3. "Intermediate Stage Complex Regional Pain Syndrome Type 1 Is Unrelated to Proinflammatory Cytokines," Renate J. M. Munnikes, Christel Muis, Martine Boersma, Claudia Heijmans-Antonissen, Freek J. Zijlstra, and Frank J. P. M. Huygen, Mediators Inflamm. 2005; 2005(6): 366–372 (as described in their most recent article, this study looked at "patients with an intermediate duration of CRPS (median 20 months) and . . . found a significant elevation of IL-6 and TNF-a in the involved extremity compared with the uninvolved extremity"); and

4. Frank J.P.M. Huygen, MD, et al, "Successful Treatment of CRPS 1
with Anti-TNF", J Pain Symptom Manage. 2004 Feb;27(2):101-3.

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 cells
in maternal tissues established during pregnancy. Immune
suppression of maternal immunity during pregnancy by the
placenta may play an important role in allowing the establishment
of such fetal microchimerism. However, peripheral
blood fetal microchimerism that persists in the postpartum
period is considered a natural event and implies the induction
of tolerance during pregnancy. Identification of fetal cells
that persist preferentially in maternal tissues subject to autoimmunity,
such as skin and thyroid, has also suggested the possible immune
modulation of the autoimmune response at the target tissue by fetal cells.
Accumulating evidence suggests that fetal immune cells may
be reactive to maternal antigens and, therefore, have the
capacity to trigger graft vs. host reactions. This would provide
a mechanism for the initiation and/or exacerbation
of autoimmune disease.

The course and severity of autoimmune thyroid disease
have long been known to be profoundly influenced by pregnancy,
with disease suppression prepartum and exacerbation
postpartum. However, the precise mechanisms involved have
not been fully understood. Here we have reviewed recent information
on the possible role of fetal microchimerism in autoimmune
thyroid disease, focusing on the immunological
consequences of intrathyroidal fetal cells and their contribution
to postpartum exacerbations.

Unfortunately, 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

Attached Files

Mast cells are involved in inflammatory reactions during CRPS-1.pdf (96.8 KB, 453 views)

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.

My best advice is to take advice from all sources, research, don't trust just one doctor, read, learn and find strength from wherever you can! This is your disease/condition and the best thing you can do is get information, question information and learn from information. You are in the early stages and that is in your favor. Last but not least, always get daily hugs!