Hey Guys

I'm wondering if someone could clarify something for me. I'm wondering about the terms "full body RSD" and "internal RSD".

For full body, does that mean it affects all 4 of your limbs- both arms AND both legs? Or does it mean that it's not sympathetically maintained and affects your whole system?

Or when people say they have it internally, is THAT when it has gone past being sympathetically maintained, or does it refer to their RSD affecting various organs/internal systems? Or both?!

My RSD affects my right arm and right leg, but my left limbs are ok so far, knock on wood! But my RSD has progressed to central neuralisation (sorry, I can't spell that today!) and is no longer sympathetically maintained. It affects my other nervous systems as well. PLUS it's affecting my heart, immune system, and other internal organs.

So do I have it full body because my whole internal body is affected? Or do I NOT have it full body because not all my limbs are affected?

I'm confused and the way I'm asking is probably making all of you confused, too!

So if any of you can shed some light onto this and make it all a bit clearer for me, I'd appreciate it

x Kate

I can only guess that different doctors are going to call it differently...

My doctors have told me that I have full body (all 4 limbs, my torso, and my head) PLUS internal organ involvement---my mouth,throat, and stomach have the cold burning pain feeling all of the time now...

Plus the effects my heart rate, and blood pressure. My resting heart rate went from 60bpm to 90bpm. My blood pressure went from a constant 90/60 to 140/90.

There are times I get the eating ice cream brain freeze feeling when I'm not eating anything cold. My eyes often feel as though ice picks are jabbing them.

RSD is one crazy monster....

Abbie

Hi Abaski, I´m a full body sufferer too, I wanted to know who is your doctor cause here in Europe doctors don´t know about full body rsd and I need a doctor that can diagnose the entire problem.

So it would be good if you can tell me the doctor and the city where he´s/she´s from.
Thank you very much, I wait for your answer.

P: If someone else who reads this can give me information about another rsd specialist that can diagnose full body rsd it would be great! Thanks.

Seen at Research Foundation for RSD/CRPS and diagnosed with generalized RSD/CRPS- i have it in all 4 limbs and one side of face.

Hi Kate, I think we are talking about 3 different things. When I spread to all limbs, chest, neck and back, I was diagnosed with generalized or full body RSD.
When Rsd went into pelvic region, colon, heart, lungs etc, was called internal RSD. I have heat radiating from these areas and HOT to touch on the skin.
RSD can go from sympathetically causing symptoms to independent pain-that is another area of the cause of symptoms. Usually after a year or so, our symptoms come from independent pain signals from the brain instead of the sympathetic system sending signals to the brain.
Hope this helps. Always thinking of you-please know we care. My love to you and your husband and children, loretta with soft hugs

Hi Kate,
Yesterday was my one year mark of having this crazy disease in both of my hands. So far that I know of bc doctors really don't know I don't think. Well it has gone to both arms and shoulders. I also need to ask a question, so have any of you had burning throughout your whole body from head to toe burning? Well that's what I face everyday and now I'm having circulation probs and my feet are now starting to hurt and turn slightly red. I am so confused! I hurt everywhere, it started as Carpal Tunnel Syndrome in both hands so I had both of them fixed together. Well then came the RSD. My husband of 14 yrs got it 9 months before me from a bike accident then surgery. So he has it in his foot. So we both have it and life is soooo hard. Driving hurts the dryer, cooking bc of heat. I hate this monster and we need a cure. Good luck to everyone. Gentle hugs. If anyone needs to talk find me on twit RSDVanessa or vknusta. I need answers! Oh ya or FB Vanessa Knusta

OMG!!!!!!! There needs to be a set of guidelines for this. But a really good question. Ive wondered about what is full body as well. Also the thought of internal is something i just cant bare to think about at this stage. I think that scares me more than anything. I really hope its no as painful for you all as i imagine it to be.

Im pretty sure i now have RSD in my entire left side from the shoulder down, although my back is only mildly effected, my arm/hand and leg are the worst. It started in my hand. I do have symptoms in my right hand and foot that are getting worse. This is all new for me and im only just starting to get to see the right doctors.
I was also panicing that it was moving into my face. Last week i was feeling numbness (over medicated still from last flare up...oops but atleast i wasnt feeling pain) in my left cheek. I also noticed that i wasnt tasting my food on that side. Im currently getting alot of cold numbness anyway, so ill be watching that space.

Im also going to check out a few of your blogs. I have also considered starting one for myself... and my sanity. lolo

I agree with Abbie I think different doctor will call it differently. For me my entire body limbs, torso, head, neck and shoulders are involved. As far as internal for me it is my heart, blood pressure, lungs, mouth and throat.

I also agree it's an ugly monster!!! I hope I helped.
Take care,
Sherrie

I too agree all doctors classify full body different. For my full body mine affects all limbs, torso, neck, head and for internal its my bladder, stomach, heart, lungs.

Niki

My experience with different doctors encompasses the word
"different" ;specifically, individual opinions on what the doctors state to be true of RSD/CRPS.