I BEG Of All of YOU
 

Hi,

My heart goes out to each and everyone of you.

You need to find out WHY you have RSD. RESEARCH

I seriously felt no less than a SCIENCE PROJECT

Don't give up.

Love, Roz

My PM Doctor feels that mine originated due to the disaster that my back was in for sooooo many years.............he determined that after I had major back surgery in 11/05. I was not surprised at all when he told me that. Because I could not remember any close precipitating injury to my feet when they both went into the burn at the same time.

Deb

I know how I got RSD :(

A botched angiogram where they accidently blocked the femoral artery. One week later the leg was feeling mighty bad, and that is when they did surgery to remove the blockage, and hopefully save the leg (which they did).

Been havin pain ever since.

I do agree that people should try and find out how they acquired this insidious disease. Although, when you study how people acquire RSD you find many places where it could be from something as simple as a stubbed toe, or sometimes there is no known cause.

It seems most cases will have some event like surgery being the culprit.

We have looked into the possibilty of me having Lymes and have had blood work run and it all came back negative.

I think we know that I have RSD as I developed it straight after I fell and sprained my ankle ... the symptoms were immediate from the minute I sprained my ankle.

The RSD in my arm also started from another injury and the symptoms again were immediate and almost identical.

Thanks for bringing this up though - you are so right, it's so important to check into WHY you have RSD!!

Infection Connection with RSD
 

Hi Roz,

I completely understand your advice and concern for your friends here on this sight, especially given your personal experience. There is an RSD doctor out east (Dr. Robert Schwartz from South Carolina I believe) who shares your thinking that there is often a hidden infection involved with RSD.

My daughter's first experience with "amplified" pain followed a staph infection in her throat. She had been away at a weekend horseback riding camp and returned home with this infection. It has always concerned me that the horse she rode and took care of that entire weekend died two days later. For many months she continued to have severe pain even though throat cultures came back normal.

**Also of concern ... prior to that, she had been bitten by something at another camp. When she returned home, she had a bite the size of a dinner plate on her leg. We took her to the emergency room where she was treated for cellulitis.

It was a year after the staph infection in her throat that she sprained her ankle and was diagnosed with RSD. I am so concerned that there may be an underlying infection that perpetuates her RSD, but when I read the symptoms of Lymes, many do not apply. I questions if it is somewhat like RSD where different individuals have different symptoms?

She has since had more than her share of staph infections, but when I took her to an infectious disease doctor, he said that once a person has one, they are more susceptible to getting others. He pretty much just blew me off.

Do you have any suggestions on how to find a "Lyme Literate" doctor in our area?

Thanks,
Jeanne

My take on it...
 

What everyone is really saying is HOW they TRIGGERED their RSD, not WHY they were prone to DEVELOP it in the first place. In my opinion, with all that I have read and researched over the past 15 years, it seems that the vast majority of RSD sufferers have some sort of other issue going on which makes their bodies susceptible to the horrors of this disease - some sort of underlying (if even undiagnosed) auto-immune disease, prior genetic abnormality in the neuropathic area such as with my son (God help him he doesn't end up like his Mom) like Charcot-Marie Tooth (part of the family of muscular dystrophy), or possibly even early childhood enviromental factors which can alter brain chemistry such that the CNS is re-wired and at risk for this type of disease (as some of the recent studies imply that neuro-plasticity can be altered and then later, re-altered through things like mirror therapy). Now that everyone here actually has the disease, I'm scared that the question doesn't help us, just the future generations, like my son, who may benefit from knowing how to look out for and avoid some of the causes, or even prevent development of the pre-disposition further. I'd like to be optimistic but I am often found lacking in that department as the medical community as a whole glosses through life and letting the individuals slip away while they help what they view as the majority (with their sniffles and colds which are much easier to treat and for which the MD's feel much better about themselves for treating.)

Hi Everyone,

I hardly know anyone here anymore, my the grace of GOD I am getting well.

I am not thin skined, nor pusher either.


Much Love, Roz xoxo

hello Roz
 

I will do some research on this thanks Roz and Bigbug for explaining further..
I know that my sister has lupus, my mom has diabetes and high blood pressure.. my daughter has alot of food allergies and excema.. my son has CP and autism (though he was premature)and now I have this.. and I have previously felt my pain has lasted way longer than it should.

Thanks!

Hi Roz!
 

I think this is a worth while post! Thank you! I have posted on this before and it has not been a popular subject. I, myself have left the door open....I am always looking. I have been tested and still consider it a posibility. There are NO confirmed negatives. I really should scan my results. One must read their reports in detail ie:check the small print. Read lab 257. By the way, how is treatment going? Are you being administered the antibiotics in an iv port in the chest or orally? Are you having HBOT along with the antibiotics? Will you be given a series of different antibiotics as part of your treatment? Again, thanks for posting. We must not lose sight of our objectives here...That, for me is to get to the cause and get the proper treatment.
Bigbug, Thanks for your input..You are absolutely correct!
Sandel, I always appreciate your openness and willingness to research, just as you always have here for many of us. Read Lab 257, I think you will find it interesting. Check out Plum Island. Sandel, also there is a lot of Lyme in Canada. You could look under Canadian Lyme Association...something like that.
Roz, good for you! I wish you much success with your treatments!!!
Love Di

Dear Jeanne,

I was also DX with STAPH/Cellulitis due to endocardis at the time, by my mainstream MD's. JO probably remembers.

But what I really had was Bartonella, tested neg- for it. Hugs, Roz

I sure know what the trigger was- - an injury.

While the problem came on gang busters after the injury it did seem there were precursors in retrospect. At the time I thought my life was going pretty well but looking back there were some flies in the ointment. I had recently been moved to a job that was less interesting and required shiftwork. The bosses began expecting overtime which had always been problematical for me. My life was changing in a few ways. My dad was starting to exhibit symptoms of dementia and he was taking care of a brother who was in a more advanced state. My health was decent but I had a chronic back problem. At the time I thought my stress was low but in retrospect it was no better than moderate.

One of these days I'll start a thread about my pet theory on this; Asking about fingernails and toenails. It seems most of us have issues here and I can't shake the feeling that this might be more closely related to the cause than the effects. My nails started getting bad about the same time that it seemed my energy level emerged. Until the late '80's I just didn't get tired. It could have been age related but it didn't seem to be since it would be accompanied by muscle stiffness and soreness after heavy work.

In about '96 I started working intensively on my nails and they were improving by the time of the injury but this set them back. There's extensive ridging and cracking.

Another thing that might be of interest to someone out there is that I keep getting nerves hit by needles. A few docs have told me it's not possible but when you get one hit you'll know it is. Nerves are very tough and would tend to roll off a needle point rather than be punctured, I believe. Apparently my nerves aren't so tough. This has been this way since before the RSD.

Interesting.......I, too, have had ridging of the fingernails for 3 years now or so. I was told it was age (I am 41). I also have had muscle twitches (fasiculations) for years.....have mentioned it to doc after doc after doc.....no one cared......told me it was stress.......the twitches are much worse now that I have RSD......more pronounced, more often, and more repetitive in nature. I was also JUST tested for fibromyalgia just 2 weeks before my RSD symptoms started. He said he "couldn't" diagnose me with it, because I only had 5/18 pressure points on the day of testing.....you need 11/18......but that he still believed I had it and wanted me to read a book about how to live with it and what to do/what not to do.

*I should mention here that I was JUST diagnosed with RSD 5 weeks ago after surgery.

Another interesting point is that I have suffered for 4 years or so with severe TMJD in my LEFT ear (also the side of my body I developed RSD in first). Nothing they have done has helped. Scans and MRI's showed some bony abnormalities but couldn't explain the degree of pain I was experiencing (I liken it to a hot burning poker being stuck in my ear). I take Advil around the clock for the pain. I have asked my Pain Doc whether he thought the TMJ could actually be RSD......he said he seriously doubted it. I've noticed that the TMJ has gotten worse since I've been diagnosed with RSD.......could be the extra stress???

Anyway, I have ALWAYS been a very anxious, jittery, nervous person. My sympathetic nervous system has always been in overload with me anyway. I have severe social anxiety.....sweat profusely in social situations......sometimes faint or feel like fainting.......it actually does not surprise me that my SNS has gotten "stuck" in disorder mode. I agree, for FUTURE generations, we should be looking for an answer to how this started in us, what could have predisposed us to it, and what seemingly "odd" symptoms we may all have in common. I'm game for being a human guinea pig......they can test me all they want to figure out why I have this!

HI,

I wish you all well. Hugs, Roz

I have been thinking about this thread, and reading the responses, and when mominpain mentioned problems in her left ear it made me think of the problems I have had with my ears.

I have meniers disease in the left ear, and have had it long before the RSD. So maybe there is something to being predisposed with RSD.

Makes me wonder???

Interesting point you made there Allen...

I have just started having problems with my left ear also. For several weeks now, when I have been cleaning my ears out, I have been getting a pretty horrible smell. I spoke to my mum about it and she says she thinks it is infected so am going to speak to doctor about it and see what he says.

The symptoms have gotten worse in my ear now - the smell is still there (no one can smell it unless i'm cleaning it though thankfully!) and my ears are now blocked and sometimes it feels like they are moist inside.

I'm not sure if this is related to RSD but it's definitely worth mentioning!

Ali12;

Please get this looked at ASAP. Infections can lead to permanent hearing loss.

This is all very interesting. I've just assumed (with what little knowledge of RSD I've gained after Reed's diagnosis) that his RSD was caused by his injury. It's interesting to read about all these other problems. Reed has ALWAYS had ear problems. Since childhood, he's probably had ear tubes 30 + times. He's got severe scarring and pretty significant hearing loss from so many infections. It would really be something to find out that he could have been predisposed to RSD because of that. Really makes you think..

I wonder if there is a doctor out there that is currently doing research on RSD that would be interested in testing us??? Perhaps there is a similar gene or enzyme or something we have in common. Seriously, my TMJ hurts more than my RSD does right now. It is the same side of my body as my RSD. I've mentioned that TWICE to my Pain doc......he doesn't think there is a connection......he says it is "stress".....but then again, HE was the one that wanted to implant me with a SCS just weeks after getting RSD to begin with. Where is the mood that says "bitter"???

My PMR believes that I got my RSD due to inadequate analgesia but enough anesthesia during my knee surgery. Essentially, my nerves felt the entire surgery even though I stayed asleep, thus overwhelming my sympathetic nervous system.
"MominpainRSD", I personally believe that there is almost no research on this topic. Here's the reason. There is no money in it. Have you ever noticed that medical research develops all kinds of drugs to "treat" illness, but when was the last "cured" illness--?polio? There is no money is curing disease. That's why it doesn't happen. I work at a large university hospital which is 9th in receiving research money from the NIH, so this isn't just me conspiracy theory. Lori Lee

I'm sure you're right.....no money.....no research. It will take one of these docs personally afflicted with it or whose family member is to push for research to raise awareness. I am simply an optimist (or more likely, naive). I did reply to a link I found on the internet about a doctor in Chicago doing research on RSD. It may have been an outdated email addy, as I got no response. I will keep looking, though. There is ONE doc I know that had RSD himself and wrote a book. I'll try to find the name and send it along. Your theory about the analgesia vs. anesthesia during surgery is very interesting.

My daughter is 15 years old and she has been diagnosed with RSD or CRPS. She has been to the Cleveland Clinic Childrens Hospital, Pain Rehabilitation Program, it is a three week program, two weeks in hospital stay and one week outpatient. While I was there I spent many hours with other mothers that had their children hospitalized with RSD. We tried to find a commonality between our children. Some of them had Positive ANA's, they also had mononucleosis, and ended up with high Epstein Barr Titers. Several had POTS, (low blood pressure with syncope and Tachycardia,) Most of them had these illnesses in the past or were being treated for them. My daughter also had a tick bite when she was a toddler. Her Lyme was negative the last blood work. But with this last blood work she had a positive ANA, her last positive ANA was 5 years ago, every other one since then has been negative until now, she had a flare up and was hospitalized. They put her on Lyrica which dropped her blood pressure so they took her off and on Tuesday she had a Sympathetic Nerve Block, and it is helping. I hope this helps.

Hi Their,

I hope your pain levelas are down. Hugs, Roz

I found out I have a high ANA also. My mom has Sjogrens. I am also a stress-oriented person. Also, I tested during pregnancy as a carrier for Strep B (I think that's what it was). I had to be on antibiotics during delivery so as not to pass it on to my daughter. The idea that the nerves feel the surgery even though the person is "out" is interesting. I am also interested as to why some people recover from this while others don't. Why do blocks work for some people and not for others? Why does ketamine work for some and not others? I think whether treated early or not can make a big difference. I was diagnosed within about 6 weeks of surgery and treated it aggressively. It's been about 18 months and I still have some issues that at this point (comparitively speaking) I would consider mild. I think they are due to weakness in that leg, which I am still treating with PT. Things are SOOO much better than they were! I am really thankful.

Hi,

I just hope some of you at least get your life back. Your all in my heart and prayers, Hugs, Roz