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Anyone have any experience of "Regional pain syndrome"


scooby_simon
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Son has pain all over his back; after 4 trips to A+E over the last month and 4 consultant appts this is what he has.

No cure, it might go away in time.

He's not been to school for over a month, gets to sleep between 10 and 2am and awake by 7am.

Anyone with any help, much appreciated.

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Did he have any injury/trauma to trigger it?

Not that we are aware of.

It started about 2 months ago when he had a small area under his left arm pit. (we assumed he'd fallen skiing / hit a race gate, fallen off his bike etc. No bruises.

First may BH Monday it escalated rapidly to all his back. We took hime to A+E 5 hrs later left with pain killers - Codine

When to the A+E Peads clinic that thursday and no real progress

Returned to A+E 3 times since, finally with the above diagnosis.

Seeing a "Family theripist" mod next month

Ging to do some digging around / try and find a support forum and see what I can dig up. He's just gone back to bed for the 3rd time after a break to play a few games to take his mind off things.

He can play games on the Wii such as tennis etc, and we get the odd "ouch" during, but the rate of "ouch" returns when he's not distracted - this is what lead to the "Regional pain syndrome" diag.

At one stage we both thought he might have been putting it on, but I've watched him form afar and it's not so.

School are bing fantastic (I suppose it helps he's hit all his targets for this year so we are planning some homewhork and hoping to get him in each morning, but we'll see!!!).

All in all a **** birthday!!!!

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is the area swollen etc? The version of this condition without a precipitant is rare.

Sorry I am not helping at all I know but I am intrigued about the basis of the diagnosis.

it is usually self-limiting but can take a few months.

Has he had any xrays?

Area not swollen.

He's had full checst/back xray and full body MRI.

he could have fallen Skiing / Hit a gate hard while training or flanned off his kike. As I said, no bruses anywhere, but kids do not always get them.

He is mentally fine and strong still. Docs (varios) were impressed with overall body trim / strenght etc.

I have the feeling we have this diag as "they dont fecking know"

I'm guessing this prob got put down to "growing pains" in the past, but this is a bit more than that.

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Put it this way Simon - I diagnosed someone with this condition yesterday - and that was the first time since I took my fellowship exams. I guess there must have been something on the MR scan that suggested it.

My apologies again then as I am not aufait with the current treatment options but as I said it is supposed to be self-limited but can last for 2-3 months

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Put it this way Simon - I diagnosed someone with this condition yesterday - and that was the first time since I took my fellowship exams. I guess there must have been something on the MR scan that suggested it.

My apologies again then as I am not aufait with the current treatment options but as I said it is supposed to be self-limited but can last for 2-3 months

No worries, it is very rare and thus there is little in internet land about it, possible teatment options (other than suggested by the docs).

We will have to "wait and see", treatment options are not great

1, Do nothing

2, "barrier methods" such as Codine to dull the symtoms

3, "Barrier methods" such as anti-depressants that also dull the symptoms, but the last thing I want is my 8yo on AD's

4, Surgery to, as I understand it, to "disconnect the nerves" so the brain does not get the signals from the nerves at issue, again last thing for an 8yo.

Do you as a doc, have any "scale" as to what indicates what the progression from "mild" to "chronic" is. Local docs were not helpful when I asked for some "level"/progression/monitoring method with Micheals condition.

Also understand we should be managing this via the care team at the hospital, but it would be good to get some other info if you, or anyone you know has any.

Ta muchly

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