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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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07-13-2009, 11:27 PM | #1 | ||
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Can it be this simple. Do we imagine some horrible thing eating at us internally which activates the immune system? Might the immune system be more "intelligent" or more susceptible to conscious control than is normally assumed?
Do you have something inside your affected limb which you find to be an abomination other than just the pain? |
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"Thanks for this!" says: |
07-13-2009, 11:43 PM | #2 | ||
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my dr has ran blood tests on me last week to rule out autoimmune disease;s,,i pray and ask for the prayers of the group to keep me in prayer,I'll have the results next monday,,,my pain med dr,,says and alot of info that ive read,says that alot can be a precursor to rsd and one disease can cause another,,and alot of things such as our habits ,drugs what we eat and what our body lacks can trigger an autoimmune,,See what your dr says and the group of their experience.. ive read so much about it that im exhausted,,but ,,yes all things are possible,,,good luck,,,do a google search as well,
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"Thanks for this!" says: | AintSoBad (07-15-2009) |
07-14-2009, 12:19 AM | #3 | |||
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Can't stay long, but there are a couple of threads you should be aware of:
CRPS and autoimmunity http://neurotalk.psychcentral.com/sh...ght=autoimmuneThere are a number of articles in there that are worth checking out. |
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07-14-2009, 02:47 AM | #4 | |||
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It could be autoimmune, but one things for sure RSD is a more complex and more living disease than any other. It is very intelligent and is basically alive its like a parasite living on us. Were both its host and its puppet. And for those of us advanced there is no cure. No one pays attention to us cause they can't make as much money off of us as they can cancer patients and the others.
And PS I Wanna rant & scream!!!!! Cause my insurance is rejecting my meds so i have none other than some xanax i have left which i have been using to just knock myself out. Wanna good knock out just take 4mg at once and you'll be out. |
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07-14-2009, 10:35 AM | #5 | |||
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There's been so much speculation, there are all kinds of theories out there. The most accepted one, the most general one, is that RSD is a consequence of soft tissue trauma.
There's talk about it being genetic, autoimmune, rheumatic, ... what have you. None of those theories have proof though. The only thing that is known is what triggers it: trauma.
__________________
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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07-14-2009, 09:50 PM | #6 | ||
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One of the big autoimmune diseases is rheumtoid arthritis for which depending on the study, the female to male ratio is as high as 4:1. The female to male ratio for RSD is somewhat higher than 2:1 but I don't think anywhere near approaches that of RA. I would think that the ratios for each would be closer if they were in fact related. A very loose (but probably unrelated) association at best! |
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"Thanks for this!" says: | AintSoBad (07-15-2009) |
07-14-2009, 11:18 PM | #7 | ||
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What if the unnatural pain we experience is the trigger for an autoimmune response. Do you feel there is something unholy in your limb? Don't get me wrong, I'm certain this is a great oversimplification. Each of us is different and CRPS (RSD) is probably a constellation of diseases most of which might never be understood. I'm just trying to get some feedback on whether people believe there is an evil within. We all call this a monster but is the monster just located in one place or is it the best description for a disease that steals our lives? When I first got the RSD I had no idea what it was. I knew it was a problem and that my hand hurt quite often but I was still productive and still able to maintain most of my life. This has been a progressive thing that seems as though I have to learn what the triggers are but (just maybe) there's a component of learning what the monster is and where resides. If our immune system is under partial conscious control we could be setting it on the pain and this is th viscious cycle that is RSD. These are just thoughts mind you. I don't know anything but I'm trying to look at everything from all different possible perspectives. When I got on powerful antibiotics years ago for diverticulitis the RSD seemed to go into a partial remission. My doctor told me it was because the body could handle only one major crisis at a time. I didn't believe it then and I don't believe it now that I'm taking these antibiotics again and the RSD is again reacting the same way; like it's in very low gear. Now I've had this idea for years that RSD is caused by a couple of microbes acting in common and one lives or reproduces in the nails of the hands or feet. So if antibiotics supresses the disease in me then it seems quite possible that either there is an infectious component or I believe that the RSD is being supressed so my immune system ratchets down which improves the symptoms. There's gotta be a way to get better. |
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"Thanks for this!" says: | AintSoBad (07-15-2009) |
07-14-2009, 11:03 PM | #8 | ||
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Hang in there pal. You've certainly answered my question here. Thank you. Just as a mirror can fool us into thinking our bad limb is OK maybe we can try to find a way to turn off the autoimmune response (if this is the trouble). |
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07-15-2009, 03:52 PM | #9 | |||
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take care..... |
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05-14-2013, 02:54 PM | #10 | ||
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Here is a link to information about the evidence for autoimmune activity in RSD/CRPS. To read it, just copy and paste it into your browser:
http://www.rsds.org/pdfsall/Blaes_An...20Sci_2007.pdf I also have some anecdotal evidence. My daughter and I started receiveing 15 grams of Privogen brand Iv Ig every 4 weeks. Our doctor noticed the benefits and felt we could do better with a slightly higher dose every 21 days. So, we started getting 20 grams of Privogen brand Iv Ig every 21 days. After 6 months, both of us were immensely improved and off all medications. My 32 year old daughter had a severe, advanced case of MS (Multiple Sclerosis). She was in a wheel chair, could not see well enough to read or drive due to optic neuritis, and suffered from extreme neuropathic pain. Now, she is reading, driving, walking just fine and almost entirely pain free. I am 58 and have lived for 35 years with RSD/CRPS that had spread throughout my body. I'm now free of pain, dystonia, involuntary movements, cramping, discoloration, sweating, brain fog, etc. And, I'm off all the meds I once desperately needed for pain, cramping, and involuntary muscle twitching. No more Neurontin, Cymbalta, Methadone, and Klonopin! I would like to see more specificity when people write or talk about Iv Ig therapy. Considering my experience, I know that the amount given and the time interval between infusions are important details. I imagine the amounts and time intervals could vary considerably between different individuals, depending upon the degree of autoimmunity involved. The immune boosting effects of Iv Ig infusion drop off rapidly after 2 weeks. Perhaps a 2 week interval would be best in the beginning. Perhaps some may be fine with a 3 week interval, etc. Also, I know that the type of Iv Ig formulation is important. For example, brands mixed with sucrose instead of saline are not safe. The doctor who does my Iv Ig infusions is an infectious disease specialist who has been doing Iv Ig infusions for over 20 years. He has stuck with Privogen, because he has never had a problem with it. Two resources for more information about autoimmunity and RSD/CRPS are: 1. American Autoimmune Related Diseases Association on the web at www.aarda.org 2. Advocacy for Paitients on the web at www.advocacyforpatients.org Good Luck To You! Good Healing! |
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"Thanks for this!" says: | Imahotep (05-17-2013), reluctant@thetable (05-15-2013) |
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