Is RSD an Autoimmune Disorder?
 

Hi Everyone,

I hope you're all doing well today.

Does anyone know if RSD is an autoimmune disorder? I've read on one website that is was. I think it was the American Autoimmune Association.

I keep forgetting to ask my dr, so was just wondering if any of you might know.

Thanks.

I don't recall it being said that it is an autoimmune but, I do know that it is an Autonomic syndrome as it directly effects the entire nervous system and causes autonomic symptoms.

Autonomic definition:

Your autonomic nervous system is made up of nerves that control those “automatic” things you need to do to survive. A few of those necessary things include blood pressure, heart rate, sweating, and digestion of your food. Autonomic dysfunction or dysautonomia refers to problems with this autonomic nervous system.

I hope that helps, and I'm sorry you are having a stressful day.

Also its considered a neurological problem because it affects the nerves. I haven't read that its autoimmune though. I will have to try and research that now that Im not flaring too bad to think.:D

hmm some new research
 

After some searching I was able to come up with some very interesting studies being done regarding the etiology of autoimmunity in CRPS

snippet: Some scientists are now convinced that for a subtype of CRPS, the body seems to be attacking itself. Autoimmunity means that the body's own defensive system turns on itself. In a certain of subset of people with CRPS, the nerves are under attack

Linkout: http://www.healthcentral.com/chronic.../autoimmunity/

Very interesting indeed!! Thanks for posting the question.

IMHO, yes. Ive read research that suggests it, but the field of CRPS research is a diverse one because there is so little definite understanding...we need more before they can say for sure. Maybe there are subtypes that are, and others that aren't about our immune response.

I'm interested in the fact that so many of us have other auto-immune problems... I'm a coeliac, and I know there are more CRPS sufferers than there should be who also have it.

I believe that the suggested auto-immune connection is the reason for the experimental ivIG treatment. It's another treatment where some claim fab results, and others no change at all. Clearly CRPS is a complex beast that works its way in each of us slightly differently.....

I like research that has a definite yes or no conclusion. Shame that's a rare beast too! :D

Bram.

Thanks everyone for your info on this question!
I'll look into those links you provided too, and also see if there are any others that can give more info on this. I hope you all have a pain and flare free night.
:grouphug:

Great question Renee! I have read studies here and there stating that it is an autoimmune disorder. If it's on the internet, then it has to be true right??? Haha, sorry, I couldn't resist :D Seriously though, Bram is correct in the fact that so many of us do have other autoimmune issues. It has to be related. I tested negative for celiac, but am definitely gluten intolerant. I also have malabsorption problems, gastroparesis, severe deficiencies in vitamins D, B12 and potassium, interstitial cystitis and allergies galore.

Thanks to you too Nanc. I appreciate the update. I'm going to look into celiac too. I don't think I was ever tested for that and am not quite sure what it is. I'll have to google it. Well, thanks again and hope you have a good night.

Yes I do believe it is. And I have read study's to where Drs are now thinking it is aswell even though they cant prove it yet. But its why I want to try IVIG infusions before I try ketamine.

Ditto, and my pain doc is putting me forward for this. She in unconvinced herself, but has passed my file on to the chap who is pioneering it. I'm not sure what to think TBH, but I'd like to hope that it just might be worth a try!

Good luck,

Bram.

Huh ya learn something new each day. I don't have any autoimmune problems except allergies which give me migraines. Shoot before getting rsd I was healthy as a horse. I did everything and anything ate and drank what others couldn't. Now I have hemorrhoids and I get gastroenteritis really easily. I have been checked for most autoimmune problems that my drs and I can think of. After finding out celiacs and lupus run in my maternal family I had that checked to after fighting with them to get it done. I have been checked numerous times for rheumatoid even. I am going to have to really look more stuff up. I am still doing research about this and don't have the knowledge y'all have yet. Just give me time.

Hi Renee
 

I don't know how much experience my own doctor has with RSD. However when I was being Dx'd for PN or RSD, I was told that it was an auto immune disease. She is a physiatrist who specialized in pain management. ginnie:grouphug:

In Jan 2010 the IASP chnaged the definition of what is Neurological Pain and RSD/CRPS no longer falls under that catagory, of course they didn't say exactly what it is now so your guess is as good as mine but one of the things it has been acknowledged as doing is to affect the auto-immune system

Well that seems quite odd considering CRPS II is caused by a 'major' nerve injury and thus affects the nervous system = neurological??? If I understand CRPS I/RSD is exactly the same except that no known nerve injury exists.

Some things just make you go..hmmmm??

They know what it does but nobody knows how or why it does it.
I January 2010 the American Pain Society published an article saying there was growing evidence that everyone had been following the wrong direction for 60 years that is was not the sympathetic reflexs that caused RSD but Arterial Vapospasms. In Oct that year at an International conference in New Mexico it was suggested the cause was activated glial.
Nobody knows

That maybe true but, it is still considered a neurological condition/syndrome/disease as it directly affects the nervous system.

Ok I give up lol :p. I am trying to follow this and my brain keeps wondering. I'm usually good at following complicated explanations. This is what I know. Rsd affect the immune system, it affects the neurological system there for its both in my book. They do need to find a way to treat it effectively. I know that since having this disease I am more prone to digestive problems and colds. I can also tell by my whole body starting to tingle when my leg is going to flare. I also know it hurts. It has cause me a lot of depression, and anxiety. It sucks royal boogers too. They need to do more research and figure things out.:grouphug: all around for everyone that suffers from this.

My immune system also seems weakened since I've gotten RSD. I was a relatively healthy person until I got RSD. Now I feel like I'm always in pain and sick with something. I'm always going to the dr for something and need a calendar just for dr appts so that I can keep track of them all. I think it's both a neurological and autoimmune disorder, but am not a dr so don't know for sure. These are just my thoughts based on what I'm going through.

Allanira,

It does affect the immune system but as far as any research has shown that I am aware of that the immune system is affected secondary to the neurological impact. In other words it doesn't start in the immune system it starts neurologically. There are many things affected by the progression of CRPS and then there are also other factors like medication, lack of movement and even depression that contribute to immune function but that is secondary to the process not the cause.. I hope that makes better sense.

Also.. the more we isolate ourselves by the very nature of this disease, the less our bodies are exposed to bacteria and build antibodies thus, when we do go to the doctor/ER or the occasional trip to the store.. we are overrun with bacteria that our bodies haven't had a chance to build antibodies for, so we get sick more easily. It is easy to blame everything on CRPS and although it likely is the reason for it may not be "the reason".

I would like to try the IVIG. A couple months ago I had edema for a couple days in both feet, then broke out in hives. Doc thought it was one of my meds so I stopped it. It took a long time to stop itching. The doc gave me prednisone for the hives, and I hadn't felt that good in many months. I asked the pain doc about the IVIG, if it would work, and she said at the time she thought it would but wanted to get to the root of the issue before covering up my symptoms. Well, now I have a dx, so I should ask her again.

Its crazy how just isolating yourself for a little bit will cause your immune system to go haywire the next time your out and about. I used to go out all the time. I would go to the mountains and just sit for a while, go to the library and read, or to the park. Now I hadn't been out in over a week before Oct 1st. I am starting to figure out its not the RSD/CRPS that weakens our immune systems, its the isolation because of the pain that helps to weaken it. Hope everyone has a good night.