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

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

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

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

Awww.. Jules
 

bump
 

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. :cool:

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

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

I have whole body crps but this does not mean for me that I have extreme pain everywhere all the time. I have flare ups that swing from one quadrant to another or central etc. However I have dysautonomia which means my blood pressure is labile. It swings way up and very low, at times causing loss of consciousness. With this go other cardiac symptoms. However I do not have a heart condition and can not be treated with medication. Due to the extreme cardiac reactions I also cannot take meds.

The up side of this is I do not have the awful med side affects to deal with. I was desperate until I discovered mirror visual feedback. This has given me relief of pain and symptoms. Breathing in a controlled way, out twice as long as in, has helped stabilize blood pressure. There are things you can do to activitate the parasympathic nervous system.

jeisea
http://www.crps-rsd-a-better-life.blogspot.com

I know I know
 

I have ful body for for years now. Instead of fealling like crap when you normally git a flaire up full body makes youu feeel liike ***** !! :D

OOOps. Did I say that? hmmmm. Must be my medsdications. I was soo fortunnate to get foot extra pain with my full body. Its is Peripheral Neuropatherathyyy. I had help with tat speln. It's like wolking on broaken glass alll the times. Never stops.

I wooden wish it on mine worsen enemies.

Chin Up!!! Mark :D :grouphug::grouphug::grouphug::grouphug:

I am sadly full body
 

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 . :wink: :Heart:

Hello Sapphire, :Wave-Hello:

Yes, You DO matter. :) I am sorry you have to deal with this terrible disease but I am glad you found your way here. Welcome aboard.

:hug:

i am not a dr but from what i have read and understand full body rsd is when rsd has spread to all the body parts externally i.e. hands, feet, arms, legs etc, as well as internally i.e. heart, lungs, liver, kidneys, etc. i hope you don't have full body. i hope that none of us ever get full body rsd. i keep praying that with raised awareness of rsd, a cure will be found soon. soft hugs to all.

Been wondering about this too.....
 

So with all the recent things happening to me, it makes me wonder if what I'm experiencing is more on the side of full body rsd. Seeing as it spread from my left arm/hand down to my left leg/foot now to my right foot and I have vision problems in my left eye, Hearing problems in my left ear, memory issues, speech issues, emotional issues, anxiety and depression, walking/standing/sitting/lifting/bending issues, dental issues and I sweat differently on my left vs the right. Breathing and getting sentenced out right, stomach and bowel issues. I just got a whole bunch of issues. But as in my thread, my PM dr sees no correlation between any of it with my CRPS. I seriously need a new doc but for those of you who have been diagnosed with FULL BODY CRPS, who determined that for you? Was is just your PM doc or did you have a "team" of Doctors who worked together? Just wanna know......oh yeah and one more thing, what type of "tests" if any where done to come to that conclusion?

thank you
 

thanks and yes i DO matter...for a long time i didn't think that. I have had the same GP that has stuck with me and assisted with what i NEEDED help with as it arose....My cardio issues sort of is treated with meds but it still gets like other areas seem to have moments where it overrides the meds to do just what it wants to and feel like i dont take anything...unfortunately (its an odd thing this condition, we ALL are diagnosed with same thing but we all react differently and require different meds or treatments for the same thing) I have pain all the time on all parts, I have a "rolling" pain at times that starts at tips of toes and rolls UP the body to my head then rolls down again...or i have my usual pain and then on top of that a limb or some place will have the hot needles or extra do not touch skin pain. I am covered up even in summer because the slightest breeze kills. i DONT go wow is me please feel sorry for me...I am STUBBORN and I am proud, i give each thing several TRIES to succeed and if i finally can NOT do it then i will ask for help...and sometimes i am watched trying and trying and they finally go..do u need a hand with that...lol ... and i am not a negative person, this is the most I have ever spoken at any one given time for a long time, but feeling glum and overwhelmed at moment i just needed to talk WITH others like me. My "glumness" is not because...no make that ...is NOT because of my condition but due to my seretonin levels and this toxicity i was experiencing. I have ceased one med and reduce 2 others that have been a MAJOR medicaiton for years now. All 3 are seretonin produces so my brain has probably NOT produced its own in about 12 years, so stopping it all now it wont be producing any and my body is reacting to that...with the constant crying and feeling overwhelmed by it all. So i cant just sit here on my own and have my brain go into chill out no think mode. it HAS to think and do and over busy...so typing helps if it means replying to a post and thinking how ANOTHER person is feeling then it refocuses its attention elsewhere, and i DO like to HELP others