Could RSD be an autoimmune disease?
 

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?

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,

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=autoimmune

parvovirus B19: another predisposing factor for CRPS? http://neurotalk.psychcentral.com/sh...ght=autoimmune

There are a number of articles in there that are worth checking out.

autoimmune
 

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.
:mad:

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.

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.

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).

Yes. It does seem to be always trauma and tends to be associated with an underlying stress.

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.

Perhaps women are simply more in tune with their immune system than men so more susceptible. I'm a man but I've taken steps to bolster my immune system from a young age.

We need to find the things we have in common. :grouphug:

Infection Connection/Immune System Response
 

Hi Imahotep,

I agree that you are likely on a good path. We have seen that our daughter's pain responds to antibiotics as well as to detoxification and immune boosting treatments.

She recently had a positive Lyme test with a confirmed diagnosis of Masters Disease (tick-born infection that mirrors Lyme) by a Lyme Literate MD.

Her Lyme doctor's approach is to treat slowly. It is thought that she has had this for over 6 six years, and too much too fast would overwhelm her system ... so he is treating her with low doses of oral antibiotics, pulsed every other day. Increased frequency has caused her to have herxheimer reactions, a good sign that we are getting the bacteria but an indication that toxins are being produced quicker than her system can eliminate them. She is also doing hyperbaric oxygen treatments.

In addition, she recently started getting IV vitamin/glutathione treatments in an effort to help her detox and to boost her immune system. She has mild herx reactions to these as well. I have been researching and have found that many are benefiting from the glutathione for several neurological conditions.

Apparently, there are numerous viruses and co-infections that can come along with a "Lyme" diagnosis. Some believe that there is this connection in many who have received MS, Autism, ALS, Alzheimer's, Parkinson's, Fibromyalgia, RSD, etc. diagnoses, which ties in with you thinking about Asperger's.

Keep searching. I pray that your quest will bring you wisdom and relief.

Jeanne

ur in my prayers..... i agree w/all u say.... i'm blessed 2 b on wkman's comp which pays 4 everything i do!
take care.....:)

This question runs deep, for me.
It seems to me, at times, that I've had an absolutely Wonderful life! (This just astounds any psychologist/psychiatrist I speak to). But,, it's been interwoven with absolutely horrible times. Younger, I seemed to "feel" painful things more deeply than others.
(This male vs female number always amazes me, too. I'm not sure why, but, I don't think that male / female "should" really have anything to do with it. Are men just too macho to show the pain, and live alone, with a bottle?
I dont' know.)

But, all through history, there have been terrible plagues, and maybe we're just modern day lepers? Of some sort?

I don't personally know ANYBODY who hasn't gotten their RSD from some sort of trauma. And, you might hafto stretch the definition of trauma.
But, something that affects/effects the body, in a negative way.

I've learned from my TBI (Traumatic brain injury) studies, that you get one, you're almost sure to get another. What's this mean? I think it means that our luck sux.
Or, is just not good.
I've been up and down all my life, from being wealthy to now losing everything to having two beautiful children whom I'm estranged from, because they warned me, not to get back together with my second wife, a welfare mama. (not my words, hers). I would never, knowingly, marry someone who was collecting off the public dole, AND working under the table! (I couldn't do that, why should I marry someone with such different moral values?). That's akin to walking up behind someone, and putting your hands in BOTH their pockets!

I'm intrigued by this site, by it's living, breathing people. We all seem to have known good lives, and then "lost it all" to this living, breathing monster! That WE Ourselves, Give life to! What can be more odd?
Humanity has it's share of horrible diseases. Of course.
But, this one seems unfair, it won't kill us!
Just strip us of Everything!

But then, when this happens, We realize just how rich our lives were. And, we have that memory, that can be depressing at times.
And, we usually have an uncanny way of "knowing" when someone nearby, is in pain. We just "know". It's like telepathy.

Never fails, my friends, when in pain, come to me. (Not RSD friends).

So, this is a Very Special Group.
I have no answer for this question. My thought is, that being a mechanic type person, I think our "electrical system" is shorted out somehow, and keeps taking down 'vital spirits' as it goes... and burning out more wiring, (nerves). It definately seems more neurological (electrical) to me. than anything else. And, let's reflect a bit on that. Neurologists are doctors, who don't want to get dirty. They all know this. The Best will admit it.
To be good, they must be Very Intelligent, and study well! and THINK HARD!

That's my little hypothesis of RSD.

The nervous system controls it all, and therefore, can mimic any kind of disease. And, so it does.

Thanks to anyone who reads my little "rant" here.

I care about you all!:hug::grouphug::hug:

Pete
asb

I found this question & the information really interesting for a couple of reasons that have always really botherered me. Two days before I had the surgery that made my RSD spread from my hand & become uncontrollbable I put my dod down from an undiagnosed autoimmune disorder. I have always wondered if whatever made him die didnt have something to do with me. I have also been sick with the Parvo Virus in humans. Also known as the fifth disease. Its much worse for adults than it is for children & I was very sick. Now I wonder if this isnt somehow related. I wish someone knew enough to tell me for sure. I wish they had been able to diagnosis my dog before he died. He battled the condition for years but suddenly got worse with seizures right before he died. It was awful. We ran every test we could on him with the vet finally just classifling it autoimmune. The whole thing is just wierd. Thanks for the info.

Now There is Proof of Autoimmunity!
 

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!

Hello Imahotep
 

My particular doctor said the RSD is auto immune related. I have several other auto immune disorders, before this nasty one showed up. I sure hope you find all the help you need. I read the links that were on this thread too. ginnie:hug:

I'm convinced CRPS is auto-immune. Ive read a lot of papers about it over the last two years, and the ones that make most sense are exploring the auto-immune angle - many others are just re-jigging previous treatments and looking at new groups of patients...

I was talking to my pain doc at my last appointment about research and she mentioned the immunoglobulin treatment and said she would look into it for me. I think it has more chance of some kind of success than some other methods - at least the observed oddities of CRPS and the total body effects of it have a definite link to the treatment itself.

I am also a coeliac - another auto-immune disease, and I've read how common it is that those with CRPS also suffer from other auto-immune conditions. So trying to tackle the auto-immune dysfunction just makes sense. Much much more so than so many other treatments that are just shots in the dark that maybe coincided with someone feeling a bit better and got lauded by the docs involved as The Next Big Thing. The Wonder Cure. Which then leaves so many of us disappointed when actually it doesn't help much...

CRPS is a crappy horrible disease, and it does indeed whittle away at our lives, in some cases leaving mere matchsticks behind... I applaud any research, but I prefer to see some real thought going into it than just some guy deciding it might be interesting to hook a few of us up to a lemon-juice drip and see what happens...:winky:

Good luck to everyone with CRPS or any other condition that is so misdiagnosed, misunderstood, and misjudged. Goodness knows we could use a little luck!

Bram. :grouphug:

I too think that CRPS has an auto-immune aspect to it. I'm curious, did any of you have courses of antibiotics prior to developing CRPS? I ask because my fiancee had several long courses of antibiotics when she was in her early 20s, after which point she started having gluten sensitivities she didn't have before, headaches, and eventually developed CRPS. I have a pet theory that compromised gut flora (which constitute a large portion of the immune system) can lead to maladaptive inflammatory processes, which lead to cortical (and perhaps other) changes in the brain that maintain pain. Just a pet theory I've kicked around (although an article out of Drexel last year found that folks with CRPS have significantly less diverse gut flora than their healthy counterparts).

Anyway, my fiancee has been on probiotics for about 3 months now and her sensitivity to gluten has drastically decreased. Furthermore, I believe that the probiotics have helped with her pain levels and immune response as well (although it's hard to tell as she has been doing several things that have all been helping). Also, she just started LDN about a month ago (which a lot of people use for autoimmune diseases) and has had great results in terms of consistency of lower pain and increase in stamina.

Just some scattered thoughts I had on the subject.

My wife who has RSD is allergic to penicillin. No, she was under no treatment using penicillin but that may lead to some truth to your theory anyway.