[InHisHands]

"Which parts of the body are involved?

The parts of the body most commonly affected by RSD are the hand and wrist, foot and ankle, or the knee. Sometimes a whole limb can be affected. For example, the arm might be painful from the shoulder down to the wrist. Sometimes people who have had RSD in one limb may also develop RSD in another – but this is relatively unusual."

(from: http://www.arc.org.uk/about_arth/booklets/6035/6035.htm)


Is it unusual for RSD to spread? In my case, it has spread 3 times, so now I have RSD in both arms/hands/shoulders, feet/legs and back... unusual?

Just wondering what anyone else's thoughts were on this issue, and what your experience was? Thanks.

[frogga]

Hey IHH

It appears you got that quote from ARC - which is a UK publication/ support group for people with arthritis.

Firstly, I would like to say their booklets are pretty dreadful and really really useless (though over time they have improved!) and secondly, a lot of drs in the UK believe that full body RSD = fibromyalgia. Weird I know.

I don't agree with the statement - I have full body RSD. But then again many of the people I know who have RSD have it only in one limb. Also, alot of drs say it's not the RSD that's spread it's the over compensation - for instance, RSD in right leg - so more pressure on left leg to behave and then because of, say, crutches or something your arms hurt from using them. These then turn into a kind of RSD pain (this is how a dr tried to explain a "spread" to me..

ignore ARC publications - they are designed to be a) non scary b) simplistic and c) in many cases wrong - and just written on folk lore.

FRxxxxxxx

Hard to say; on this board we have many people with spread, but I've been on RSD boards where the numbers are maybe half and half, or there are less with spread; we have more seriously disabled people on this board than the previous incarnation, I'd guess that here the spreaders outweigh the non-spreaders.

I keep seeing similar statements too; really I don't think enough studies have been done. It's important to look at the dates on websites, articles and publications. Far as I can see, for a number of years the same tired old pieces on RSD were being re-hashed and there isn't enough - not nearly enough - emphasis on the fact that lack of research into RSD means that simply not enough is known about it.

But I'm hearing that phrase again - absence of proof isn't proof of absence.

FWIW it hasn't spread yet for me, thank goodness...(yet! yet!), but in general spread seems to me to be on the rise.
all the best

Hi Frogga,

We posted at the same time

Following on from what you are saying...interesting. I do have RSI in my non-RSD right hand/arm, which would seem to fit the theory of over-compensation. But I don't buy that theory at all.

Overcompensation usually leads to RSI or musculoskeletal disorders. My experience is that a) I never did much with my left (RSD) hand anyway, so not much to compensate for - I'm very dominant right - and b) the RSD pain is persistent, never goes away, whereas the RSI pain does if rested. That's a blindingly obvious difference to someone with both, they're just not the same thing, although both are excruciatingly painful.

I do think that with RSD there is some mechanism at work of the mirror and phantom limb pain variety.
all the best

[debbiehub]

My RSD spread from one foot to the other-now both arms and hands- I have read that %70 of RSDers have spread....
Debbie

[Brokenwings]

My RSD started with the left hand, then the right hand/arm, now BOTH arms/hands, and "creeping" upwards...my Doctor said that a "mirroring" is VERY common with RSD, and basically CONFIRMS the diagnosis...

[frogga]

Yo artist

how are you? I do agree with you - I never said I thought the doctors were right for suggesting that spread is due to overcompensation. What they said was:

"If you are overcompensating for one side then the other is likely to develop problems as well --> though not necessarily RSD issues - it could be aches and pains/ RSI etc - doesn't mean you have RSD - but many drs believe that this situation makes you MORE PRONE to developing a spread in the RSD - either becuse of a higher risk of injury or because of the simple biomechanics (ok HARD biomechanics).

I can tell when my spread is RSD - it burns like hell, the alloydinia gets really bad and I find the joints contract and I can't move - that's NOT RSI pain or fibro pain - that's RSD. However, there is some proof that if you expect pain to be a certain way then you will percieve it in that way. I remeber when I broke my humerus --> I kept telling the drs my wrist was broken but after x raying and re x raying they discovered it was my humerus - just I'd expected to feel the pain in my wrist - so that's where it is. (shows that proprioception is really important in pain realisation - which might be linked to mirror spread - as mirror therapy i also used).

I think the number of people with worse RSD appears to be increasing - but that might be due to the improvements in accesibility technology. For instance with voice software, I use it, Hope uses it and several others have mentioned they have. If I didn't have that I couldn't bug others to the same degree.

lol oh well - no, I wasn't trying to suggest that if you over compensate on the other side you will develop RSD (well, to be honest, I was so exhusted when I emailed you last it could have said anything!)

Take care my dears!

FRxxxxxxxxxxxxxxx

Hi Frogga - I didn't think you were saying anything I didn't agree with, wasn't trying to disagree, just applying what the UK docs suggest to myself LOL - glad I'm here and not in the UK if that's the case

It was interesting that when I first noticed the RSI the docs here were very quick to jump to the conclusion that it was spread - I had 2 docs saying it was RSD spread, one saying it was the spinal stenosis, another saying it was RSI.... so it looked to me as if they were almost expecting spread.

One slightly worrying thing I've noticed though is that when I've done too much with the right RSI hand it sets off the left RSD one if I'm not careful. Oh yes, forget to tell you, I got the working splints, they do help. Got two soft ones for actually working and a molded plastic one for night (yuk, don't like it).

Thanks for your thoughts, sweetie,
all the best

[CZZ74]

Most sites now say, 70% of RSD cases spread, mine did.

[HubbyWithRSD]

My hubbies RSD in his leg did not spread. He actually went into a remission of sort (after about 5-6 years of living hell) with having just a few skin sore break out here, and there, having to always walk with a brace and on and off days of managable pain & cramping. I contribute this to the fantastic physical therapy team he had, Dr's who recognized the signs early on, a pain management clinic and a lot of hard work.

He does have RSD now in his arm caused by surgery to the ulnar nerve. Sometimes he says his shoulder aches as well but sometimes I also believe this could be caused by the way he carries himself - in a protective mode with his arms.

I guess it's the individual, the dr who diagnoses, the type of therapy that works well for them, and a lot of other factors. If all the right things are not found as far as treatment goes along with early diagnosis I would imagine spreading is a lot more common.