Hi all!!

Well here I am and was always wondering if it spread too. It all started in the right leg when the doctor accidentally blocked the artery after an angiogram. The Surgery to remove that blockage.....well it was murder LOL....cause it killed me, but luckily they brought me back.

Now that was in 2000, so that was a few years ago. Now 3 years ago my right arm and shoulder start to hurt fairly bad, and the arm will turn this pretty dark and red color. Especially when im out walking, or trying to walk lol. Plus the arm will be aching like nobody's business.

Then last year to add insult to injury, my hand starts to get these weird cramps where I cannot open my hand, and the thumb is useless. It is actually the thumb and first 2 fingers that are not working. Certain things will cause it to happen like right now! Things like typing, holding bags, any kind of weight bearing.

At first it was easy to hide, but now it is occuring so often that my wife, friends, and kids are catching me trying to use this hand, which by the way is my dominant hand. Real bummer here!!!

This isnt even counting that it has got into my peripheral nervous system, and raised my blood pressure so much that I now take 3 blood pressure meds to try to control. And I could go on and on.

So yes it spreads, unless you want to call it aids or something else lol.

I don't know if there is a direction for which RSD spreads... I guess it's like everything else we are ALL DIFFERENT.

I dreaded the fact that I knew my RSD was spreading... denied it every time!! Many things were pointed out to me by doctors, family, and friends. I didn't want to believe it so I ignored it as much as I could kind of thing...not like I could deny if for long...

Mine spread from one leg to the other leg, then through my torso and into the upper part of one arm and stayed like this for a while...maybe a month...

Then the spread went nuts...almost overnight it seemed like my whole body was on fire, cold, purple, tremors, muscle wasting, cramping, etc...

I didn't want to call it spread!! I didn't want this monster to take over my body... but each time my doctors checked me out and diagnosed the spread.... so even though I denied it...it was and is fact... I now have full body spread.

I think that with RSD...WE ARE ALL VERY DIFFERENT but in a way the same....we all share pain!!

I can only pray that somewhere out there... someone is going to find a cure for us all!!!

Abbie

**Edit**

After reading your comments Shelmora I must say I felt angry and very sad. I wonder why you had never posted here before. Clearly you have been holding back for some time and your pent up frustrations have been heard loud and clear.

I highly recommend that you read an editorial by Louise Oaklander “RSD/CRPS: The end of the beginning for an attitude adjustment on what defines RSD for any one individual. http://www.rsds.org/2/library/articl..._editorial.pdf

According to your standards I don't have RSD because I DO wear hiking boots (on the days that I can manage to get them on) and yes I also wear jeans too. I'm not going to let RSD control my life and I'm bound and determined to do as much as I can to stay active and involved as long as I can. I refuse to use my cane for fear of becoming too dependant on it and as a result I live with an invisible disease, which gives many rise to question the legitimacy of my diagnosis. I know what it's like to have people look at me with that strange look of disbelief in their eyes. No I am not a WC case nor am I living off the backs of the good Canadian disability pension system.

Back to the subject of the OP, NancyinLA states she’s been told by her doctors that they think she now has RSD in her foot, the same side of her originating site of RSD in her wrist. She asks “can RSD affect one side of the body??” Her doctors have told her they believe it to be so.

A search on RSDSA.org brings up this excellent review of databases on this subject.
http://www.rsds.org/3/research/evidence_report_1.html

I think this is the single most frightening aspect of the diagnosis for all of us. There is lots of fear around "spread" especially for those newly diagnosed. It's a hotly debated subject and not merely for financial gain. Personally I'd like to know if the intermittent burning and deep bone pain I now experience in my left arm and hand is also RSD? My doctor has not been able to confirm it because I do not display all the signs and symptoms there, it comes and goes. I hope it isn't the spread of my RSD from my left foot. If it isn't RSD I'd sure like to know what it is so it can be treated properly.

MsL

There are people in remission that can wear different kinds of shoes and jeans. I consider myself pretty much in remission although today my right arm has been burning due to the weather and doing too much.

I do wear tennis shoes and if I went hiking, I would wear my hiking boots. I've had the same pair for about 15 years and haven't worn them since 98 due to the RSD. My kids just bought a cabin in the mountains so when I go up there I will wear my hiking boots and I will hike with the boys.

I have been diagnosed with internal RSD as well as RSD in my pelvic area and whole upper body and my right foot up to my leg, my back. I have had the same PCP for 18 years and I have all of the Drs. lined up I need for everything else and I have had several diagnose me with the RSD in different areas.

I will say I do have Fibromyalgia and was diagnosed with it about the same time as my RSD. I also have Plantar Fascius in my feet, osteoarthritis, Interstital Cystitis, Pelvic Congestion Syndrome, Costocondritis and too much more to name. I can tell when I am dealing with my RSD, Fibro or whatever else might be acting up at the time.

As far as the bloated stomach and looking 8 months pregnant, I am dealing with that now. I didn't chalk it up to the RSD though. I have been diagnosed with Motility Related Dyspepsia and Metabolic Syndrome and just had blood work done Monday to see if I have Diabetes and check my high cholestral.

I donot chalk all my things up to RSD, I honestly got to thinking that this stomach issues might be because of the RSD last week but then I get myself back on track and say no, it's not that. I am on Mitformin at this time to try and help it but it is now not working so we are back to square one. I went off of the Reglan due to the bad side effects it causes.

I did belong to an RSD group and I have seen some of what you are talking about. I have 3 friends in one family hooked on drugs and using these symptoms to get the meds. One actually listened to what I said about the symptoms and others said and ran to the Dr. with them. She found one that would give her anything she wants. She had an SCS put in and in one month had it turned off so she could get her meds. You are definatly not wrong about some of this but you really have to know people to be able to say this about them.

The ones on this forum are dealing with a lot and such good people and I talk to some on the phone and through PM and emails and what they go through is so bad compared to what I feel like I am going through.

I get out more and I have met many people with RSD. Some are suffering so much.

I'm blessed with good Drs. and I don't think I have ran into any that gave me a hard way to go about my medical problems. I have had some say I have too much wrong with me for them to deal with but no doubts.

They do get mad at me sometimes for expecting to get better or close to being well. They say I need to accept where I am and be ok with it.

There are two sides to every story, that's for sure.

Ada

Shelmora
*edit*,the C in crps stands for complex,,it was renamed because no 2 people have the same symptoms which in turn make dr;s mis dignosed,,ive been to 10 drs that couldnt figure it out,,until several dr;s got together and figured it out,,and the time frame on spreading on rsd or full body,,,there is no timeline,,ive got it in both legs in side of 6 weeks due to having a THR,,,which if i didnt have the surgery,it may have taken 3 years to spread that far, it has a mind of it own and no two people spread the same,,one may have it only in 1 limb for ten yeaRS AND AN OTHER CAN BE FULL BODY IN A MATTER OF MONTHS,,,,,,,,,,,,,,,please think ,,there are alot of people that are affended,,,i feel for all people and dont just assume,,,,rsd does spread as fast as it wants,,,theres no set dates,,*edit*, ive met quite of few people who thru their lack of knowledge of the disease and doubting that i had it , have costed me valuable time to get the care that i despertaly needed, while it was still in SIP to throw it into remission ,,,,,,,,,,,think dont assume that you and your dr,,knows everything ,and patients who are plaqued with this disease are wrong my hope is that God cures us all,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,