no sleep is definetly one of the worst things...it spirals out of control...

I had it explained that there is a spectrum of certain pain disorders..........

RSD ------------------> Fibro----------------> CFS

RSD - severe pain, mild fatigue

CFS - severe fatigue, pain

Fibro - mix of both.

(this is according to one of my consultants). He also believed that full body RSD = Fibro. (I strongly disagree with this as with fibro doesn't lead to the same symptoms as in osteoporosis, swelling, colour changes etc). He has changed his tune and decided that full body RSD does exist now (unfortunatly).

Also, as someone said, if you have on pain disorder you are more likely to develop another and you are more likely to end up injuring another part of you....... (even as simply as using crutches LONG term leads to nerve damage in thumbs and palms) etc etc......

take care

love

Froggsy xxxxxxxxxxxxx

Hi Froggsy,
I definitely agree with you that your consultant thinking that full body CRPS = Fibromyalgia is WRONG!
I'd love to know his physiological explanation of that. My symptoms are extreme in their differences with both, my CRPS has all the hallmark signs of a neurological disorder whereas my Fibro is definitely muscular in origin.
How will we ever move forward if we have consultants with this midset?
Tayla

tell me about it!

UK consultants are FAR worse.... REAL idiots... but he explained it to me as "Chronic pain which causes memory problems, low mood and is full body is fibro, chronic pain which affects one bit is RSD."

Yep.. Fine.

No offense to fibro sufferers... but from what I read the pain from fibro is not as severe as RSD pain, it does not cause (many of) the physical problems the RSD does - such as swelling, colour change, joint deformity, neurological problems etc etc etc....

but.... if it's pain it's either depression, fibro, TMJ, chronic pain syndrome or if you have an EXCEPTIONAL dr that's heard of it. RSD.

Can't stay at comp more - but I made sure I left that dr!!!

Love ya

Froggsy xxxxxxxxxxxxx

WOT a load of rubbish some docs dish out. I have FM, and a good friend of mine has RSD, and I can tell you that we're on different pain planets. RSD is a whole different level of pain and suffering and body damage than FM, because RSD affects different body systems (orthopedic, limbic, language, blood pressure, dystonia etcccc) whereas FM can be utter misery but it doesn't spiral into, well, you know... HELL!

Mollymcn,
Thank you so much yes I have had RSD for 4 ys almost Stage 3 in a chair at 39 yrs old. Can we keep in touch still ? how are you? Take Care Gentle Hugs Karen Please let me know either way but Id like to talk.....

Exactly.... That's how I feel about it too. It is rubbish. But when you are starting with rubbish doctors...............

There is no way what I live with is FM. It doesn't slowly shut down your body, leave you with almost no voluntary movements, confine you in a body that slowly locks you into dystonic contortions and a long drawn out pain filled nightmare of burning, stabbing, whipping and other dreams of the masochist... I'm not saying FM is pleasant.. but RSD really takes the biscuit for managing to be as unpleasant as possible in almost any category.. when even a hug or kiss burns to the bone....you can't think straight, you don't sleep, you suddenly become the idiot in shorts, strappy top, sunglasses and earmuffs etc....

Ok.. sorry, stupid rant there!! it is just so frustrating to be up against a generation of ignorant doctors, who because they don't understand what is going on in our bodies decide the best way to treat is is through either blaming the patient or to some extent trivialising what we live with and ignoring the damage this disease causes on so many levels, neuropathic, vascularly, osteotically (wrong word, can't remeber the right one) etc..

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxxxx

I didn't take my own FM seriously until it turned quite narsty last year after the flu, but then my friend's RSD zoomed into stage IV and I've never even read of anything so horrid (I used to be a professor at a medical school before FM made my energy level vanish and turned my brain into mush)(i'm not a doctor so please don't expect anything like that!). I've seen a few "fringe" articles hypothesizing there might be some sort of underlying mechanisms beneath FM and RSD (usually inflammation) but anybody seriously believing they are the same is balmy. That is my humble, scientific, opinion. BALMY.

What is stage IV??

mollymcn, You said same problems with mush with your brain I have had some much problems really bad wiith that it was kind of that like that before alittle mostly remembering things and writing but the last few days like almost a week I had 2 days of lab work the first time they did 12 tubs the 2nd one just like 4 I think then thry took the 1st time I had burning pain a few minutes like 15 minutes later the worse pain that I never had after lab work before doing lab work it was like the pain I had when I had to have a central line for T.P.N.(that was the only way I eat for 5yrs in starting 1995) they tried again a few month even a yr ago because Imnot at 100 pounds right now a month ago I was 102 1/2 not enough for me and they removed some of my small bowl ) When they did it again the line the TPN was on firer in my chest it made my chest all red and the pain they tried to remove everything but I couldnt do anything the pain was incerdable so the first time I had pain oh they had to stop the TPN and no food but the pain from lab work was so bad I came home and took a bath because I wanted to jump out the window again from the bad pain and since the second time of blood test I can hardly type right and my fingers instead of just pain is stiff and painful and much trying to email people and make sence and even spell I had problem instage 3 with that but know itss so bad and they were looking for stuff because Im losing sorry but I dont know how to say this besides just saying it the last 6months my bladder is losing control I have no feeling sometimes when I laugh things like that I didnt tell my drs or anyone intil before the labs thats why she did all of that and losing other things I wear contacts and I had notice sice the test sometimes I have to close one of my eyes decause of bluring vision and my eyes hadnt chaned all of theses is since the blood work. And the RSD pain in my feet are worse to. Im so scared Im 39 not married anymore dont have alot of support from my family decause I broke my foot and injuryed my nerves at my brothers house so I put a cllaim in his home owers house it made my family fight me but I had to I was still married so Im still getting the fall out but my mom is hulpful with my teen son and a little with me because I need alot more help Im in a chair havent walked in 4years. So Im hope its not FM to because my irthmom that I just meet last Apirl my sons birthday the day after she has FM and I know have RSD atfer braking my foot. So Its really bad moving faster than before so thats why I asked adout FM but when you said your brain thinking now I wanted to email you again can we keep in touch? I wish you well and thinking about you......karen