I am wondering if anyone knows what the criteria is for the term "full body"....

I now have RSD in both feet, one calf, both shoulders, my entire back, my left arm.

Only parts not affected are my thighs, one calf, right arm and front of my torso.

Am I full body now?

I was doing so well -- then about 6 weeks ago my left foot started hurting exactly like my right one did in 2001. Went to Dr. yesterday and was sent for a series of x-rays to make sure it's not a stress fracture - but I am sure it's the RSD - even if there is a fracture. My meds are pretty balanced now, so that may be why this new area is not **quite** as bad as the other areas were when it spread.

Thanks!
Jules

i believe, from what i have read, that 'full body' means the rsd is systemic.
joan

Thanks, Joan.

I am not sure what you mean by systemic RSD.

I am only familiar with the term systemic relating to spraying roses etc. with systemic sprays that the plant takes up internally.

So, do you mean when the organs such as lungs and heart are involved?

Thanks again..
Jules

hi jules,
there is so much conflicting literature as far as exactly what 'full body' means, but from what i can figure from what i read, it is when the immune system is effected and also the internal organs.
i am surprised that you have not heard from some people here who have very severe forms of rsd, and when they consider it full body. that would be helpful and i'm sure someone will chime in at some point when they read this posting.
you sounds like you are suffering, and no matter who calls it what, and at what level, it sounds bad, and my heart goes out to you. figuring out how much rsd you have is like being a little pregnant! even a little is too much.
joan

Just want to say hello Jules. Jules, please let the Dr. do all the testing he can. I know our Froggga has full body RSD maybe she can come on and tell you all about hers. If you can go and look back at the other posts, I believe she has spoken of hers. I just want to say hi and I am thinking about you. I am so sorry that your having a "Tough go at this awful beast"!your not up to par, Jules. you will be in my thoughts as well as my prayers.Love, Desi

bumping for dealingwithtos

Thank you Jules,

I get to the point that I'm so tired and am so uncomfortable that everything hurts. But, I guess I should be thankful that there isn't any internal organ involvement that I know of yet.

I'm counting my lucky stars as we speak.

As far as my understanding RSD is full body when it has reached each and every body part.

I have full body RSD- RSD in each area of my body and I also deal with immune system problems, autonomic nervous system problems, lots of neurological problems, etc...

My neurologist diagnosed me with full body RSD after testing each part of my body for signs of RSD- color changes, temperature changes, swelling, allodynia, muscle spasms/ tremors and that sort of thing, etc..

I am not 100% sure though, as all I knew was my neuro found RSD in each part of my body. Is the organ problems from RSD internally or neurological/ immune/ etc problems from RSD?

It is all confusing... just some thoughts from my experience.

Full body RSD

For me this means that every part of my body is affected by the pain, swelling, colour changes, temperature differences and spasm. This goes from my face, head, neck, spine, chest, stomach, arms right down to my legs. It means I get immune system problems, heart problems, bowel problems, stomach issues, breathing issues and circulation and oxygen issues. I have memory issues, vision issues, hearing problems and taste problems.

Full body literally means full body. And it means all the time. Sometimes parts are worse, sometimes they are abit better but it is never not there....

It sucks Jules.. but I don't think you quite got there yet girl!! hope you are feeling abit better my dear!!!

Love ya

Froggsy xxxxxxxxxx

Hi all...I am new to this board but NOT to RSD...I have only just found this but I feel I need to write. I have had CRPS/RSD now for 20 yrs and
I have FULL BODY RSD.

It is from head to toe inside and out. I have memory problems, sometimes speech issues and brain to hands issues, hearing issues so that noise is so much LOUDER and hurts. I cant deal with more then one sound on those days so I have to put headphones on and watch a movie and that is the ONLY noise I focus on then and I can settle myself., eye problems (dry eyes and vision issues such as blurring and unable to stay focused on something), mouth problems (dry mouth and now numerous teeth pulled because of acid reflux destroying teeth. I had xray and no decay in a tooth and then 5 months later I had tooth ache and xray showed severe decay and it was pulled there and then), stomach issues (finding it hard to find something I can eat without issues. Sometimes I just cant eat), bowel issues, heart x 2 issues, breathing issues (never smoked ever diagnosed with COPD by a cardiologist after several tests), gall bladder issues (it stopped working for no reason all of a sudden and started causing infection up into my liver and into my kidneys so it came OUT) Walking issues, use a rollalator to get about (same days I can not walk at all and is bed bound) tremors and spasms to the point it looks like I am having a seizure) medications galore just so I can get from my bed to my recliner most days. Just been diagnosed with Seretonin Toxicity/Syndrome now had to stop and reduce medications and now facing days with little serotonin Long term sleep issues....days without sleep or days where I CANT wake up causing myself issues as I sleep thru times for medication taking.

BUT...despite all that and pain each and every day and then facing all of the above every moment of my day not an inch without pain, THAT, all of that up there is NOT ME. It is NOT who I am. I have learnt how important it is to still say my RSD/CRPS does NOT define me. I am still an individual and I still MATTER .