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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

When is RSD "full body"

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Unread 08-29-2007, 08:00 PM   #1
daylilyfan
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Default When is RSD "full body"

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
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Unread 08-30-2007, 08:00 PM   #2
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i believe, from what i have read, that 'full body' means the rsd is systemic.
joan
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Unread 08-31-2007, 02:36 PM   #3
daylilyfan
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Default systemic?

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
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Unread 08-31-2007, 07:34 PM   #4
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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
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Unread 08-31-2007, 11:12 PM   #5
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Quote:
Originally Posted by daylilyfan View Post
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
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
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Love, Desi
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Unread 09-05-2007, 04:36 PM   #6
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bumping for dealingwithtos
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Unread 09-06-2007, 11:05 AM   #7
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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.
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Unread 09-06-2007, 02:39 PM   #8
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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.
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Unread 09-13-2007, 11:49 AM   #9
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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
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Unread 09-14-2007, 08:14 AM   #10
daylilyfan
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Default thanks

Thanks to all who replied here....
Especially nice to hear from Frogga again!

Guess my family doc was wrong when she said she thought I was "full body".... I am thankful for that.

I have hearing/ear problems on the side of my head that is affected.

I thought I was having severe eye problems, but I believe it ended up being the topamax. I just bought new glasses for computer and trifocals to wear over my glasses a few months back. I am extremely near-sighted. I have to wear such strong contacts to see far away that it blurs my close sight... so I have worn bi-focal or tri-focal glasses with my contacts for several years. After weaning off the topomax, (which I have been on since 2001 when this monster reared it's ugly head - 200 mg a day) my eyesight changed so much I needed new lenses for the new glasses. My eye doc told me to give it three months before we made the change, to allow the effects of the medication to wear off. It amazed me how the medication affected my sight!

I go for a triple phase bone scan next week on the foot that is now giving me problems. Not to show if it is RSD... but to see if it is a stress fracture that is not showing up on X-ray. That is how this crud started in 2001 - from 3 stress fractures in my other foot. I intend to ask before the test if they can tell the "re-uptake" in a fracture is different than how it looks for RSD. I am praying it is RSD, because I don't think I can take months on crutches with the RSD so bad in my arm, and shoulders. With my other foot, I was on crutches with no weight bearing for 10 months, with one of those big boot things on that went up to my knee. After the crutches, I wore the boot another year... then they put me in an AFO plastic brace - that went to my knee... had that thing on for a couple years... then went to a plastic brace that was just on my foot. Now - we know that it was RSD in that foot causing all the pain-- but they didn't catch it then. One doctor thought it was - sent me to a pain spec. who said if I didn't have sensitivity to light touch, there was NO WAY it was RSD. Yeah, right.

Now I know from going to docs with a lot more experience that you can have RSD and not be sensitive to light touch/wind. I am sensitive to vibration, and unexpected touch, like someone coming up behind me and patting me on the back, or how some people will reach out and touch your arm in friendship.

Thanks again for the responses.

Jules
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