Does RSD "Burn itself out"?
 

Hi All.

Went to my PM the other day and he told me that my RSD will "burn itself out". Has anyone ever experienced this? I hope it happens, but I'm afraid to become too hopeful. If so, if anyone has experienced this, about when did it happen? Did you get significant relief? Do you still need meds, etc.?

Any enlightment on this subject will be greatly appreciated!

Hope all is well!:winky:

delete as my words didn't sound right.

I got hurt in '98 and it seemed almost like it was burning itself out. I got off all the medication even the B/P medication. I was still suffering a lot but was getting so I could do more and more. Then I got hurt again and turned downhill pretty sharply.

Hi Kim, 15 years ago I got RSD following surgery. After a year of pt and massage therapy I had a year remission. then the RSD moved to the opposite shoulder. more therapy and another year of remission. Then injured my hand,water skiing and went full body after that. I wasn't diagnosed for 4 years, but my neuro said I've had it since that 'surgery' I did have jolts, jerks, spasms body wide for a long time. Went on 3200 mg neurotin to get rid of them. After gaining weight, I asked to gradually go off of neurotin-hated the weight gain and the feeling from the drug. I've been off a couple years and didn't get the symptoms back, so I'm very grataeful for that. I'm on less meds now than 5 years ago. I sleep 10 hrs. now verses not getting to sleep till 5-6 a.m. Have a very good Dr.. So in some ways I'm better now than 5 years ago.I'm completely mobile except one hand. So have a lot to be grateful for. Hope you have some improvements too. It's a tough thing to deal with day in and day out. As for pain meds, I'm on 4 vicodin a day instead of 6, and mentally better. My Dr. is neuro, pharmacologist, psychiatrist, so I've had good care. Hope the best for you, loretta with soft hugs :grouphug:

For my wifes sake I hope it burns out. That will be the happiest day in our lives.

I've read somewhere of a study done in Europe that concluded that many with RSD go into remission after middle age. I have no idea if there is merit to this or not.

Okay...I am middle aged. Does that mean now? Hahaha!

The age thing is interesting because it seems most people contract RSD mostly in their mid 30s, less younger less older. Very strange to me.

Funny
 

I first got RSD at age 34. My brother also has it, got it at age 36. Mid-thirties tend to be especially stressful years, maybe that is the reason for nerve-burnout trigger for dormant diseases.

I've thought of that but I think we always have some sort of stress of one thing or another throughout most of our lives. Keep in mind mostly women suffer from RSD many times the rate of men and men suffer stress in different ways, maybe differently than women and die from stress more often.
To me could it be the nervous system's maturity or peak years after its growth and before it's slowdown or aging? Also, is ethnicity a part of it? How many asians, Africans suffer RSD compared to whites? For example if whites are the dominate ones who suffer most then which european region is more likely to suffer from RSD. English-Irish, German-French, Greek-Italian-Spanish etc... Is there a race or culture of humans who have no record of RSD?

Hi Kim,
 

I got RSD after TOS surgery and I was in my late 40's. Jim, you might have a point of interest in the race issue of RSD. I have met at least 12 people with RSD and all of them are white. Interesting.

Kim, Mine sure didn't burn out. It took us years to get it to calm down. Like Loretta, I have a good Dr. He was determined to get me better so we worked hard at it. Meds, PT, Triggerpoint injections, blocks, etc. If I had sat around and waited for mine to burn out, I would have killed myself from the pain.

It might be possible, but I've not seen anyone with it in my area have it to burnout without medical help.

Ada

I can't find this article - can someone post a link to it when they get a chance?

Thanks, Sandy

Jim you bring up an interesting point. I think that part of the prevalence of RSD is a modern, first world lifestyle. Whenever I read a book or watch a history show on a different era, I always think "Man, I never would have survived during that time." But then I always remind myself that I wouldn't have been doing gymnastics all day every day in the 15th century. So the problem probably wouldn't have presented itself.

I just always think that this is an interesting question to ponder. And I wouldn't be surprised if the incidence of RSD is the same across all races. It's like any other condition- awareness levels predict diagnosis rates. People who do not have access to health care are not going to be diagnosed. You usually only see pronounced differences across races when the disease has a genetic origin- something like Tay-Sachs.

Lynn

Very true. Many folks in the US have a hell of a time getting a diagnosis let alone a third world country having the medical support and know how. As far as a modern ailment I doubt it. Keep in mind this disease was first identified during the American Civil War when a doctor Silas Weir Mitchell noticed gun shot wounds healing with no diminishing of the pain but spreading instead. And most likely was never pinned down through the ages. Can you imagine suffering from this disease in the 15th century? You'd most likely be pinned as a nut and would be cassed out. I bet if one was to research closely one could problably find what looks to be RSD many moons ago.
http://en.wikipedia.org/wiki/Reflex_...etic_Dystrophy

"It is also theorized that certain people might be genetically predisposed to develop symptoms of RSD/CRPS after a significant or seemingly insignificant injury has been sustained.[17] These tests are being performed by The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), American RSD Hope, and Richard G. Boles, M.D. Research began in October 2008, but the outcome has yet to be released to the medical community.[18]"

There could very well be a genetic factor with this desease but would be hard to research because of its rarity and often misdiagnosed. But should be persued never the less, and perhaps it has in a limited way in the past. It could lead to treatment or cure if a contrast can be found between those who are predisposed to this disease and those who aren't.

I'd like to add, it seems phantom pain might be a variant of RSD or a link of some sort in the brain that may have some kind of blueprint of our DNA imprinted in someway that when it is broken the nervous system goes into overdrive. If this is the case it would be easier to see how different races respond to or have a lack of phantom pain if infact there are differences. It would be much easier to track down and interview those with missing limbs and or interviewing doctors around the world.

http://www.depression-guide.com/brai...antom-pain.htm

I think I'd be pegged a bit of a nut no matter what era I was in! The thing I always wonder about it having epilepsy in another age- having seizures that are totally misunderstood and being labeled a witch. It's interesting how these things happen.

If you are interested in phantom pain, I would recommend looking up the work of V.S. Ramachandran- I had the pleasure of taking a class from him at UCSD, and he's done some really cool work on this. There's a clip from NOVA that's really a good watch. He does this "mirror therapy" on people who have phantom pain, and it seems to work really nicely. Magically almost. It makes me wonder sometimes if we focus on the limbs that do work if it will convince our brains to make our affected limbs to be less painful. (That sounds so simplistic, but that is what mirror therapy breaks down to... and no, no implication that this means anyone is crazy!) But at the end of the day, it all really is in our brains- I mean, that's where everything is!

Thank you for this though provoking subject and discussion!

Lynn

As I was scanning the internet months ago, I came across alot of articles refering that RSD was more prominent in the white race , Then it stairstepped down in each remaining race's[which i dont remember],,but as mentioned above,,,woman were more at risk of getting RSD than men,,,another issue mentioned was people who had nervous conditions[bipolar,anxiety,A.D.D }were alot more at risk,, That did make sense,since stress and anxiety with me cause's flares,spread,and pain,,,,what a vicious cycle,,because for some of us,,you get pain or flares with pain, and that makes us worry and stress more,,it also makes sense why they tell us no choclate,caffeine,and anti-depressants... And I as well ;have read that its the middle aged{I read mid forties] were at a higher risk.........