Need everybodies, help advice assistance Please

  Kevscar1 08:32 22 Sep 2010

As some of you know I have ben suffering with RSD for 15 months now. Before that I would bet like me that 99% of you had never heard of it let alone thatit'sthe most painful condition known to Man. The big problem is that 99% of the NHS Staff are the same as you.
When I first started reseaching it last Nov the only UK site that came up was dead. I ended up looking at site in the US, Canada and Holland. As the US site said that because I did not have the chronic pain 24/7 I did not have RSD so I have had no one to talk to who understands what I am going through although I know a lot of you have tried to help.
Last week after following links through 3 or 4 sites I came to this.
click here
The relief of finding people who have experienced what is happening to me is enormous.
I did another search with bing limited to the UK and the site does come up but not until the bottom of the fourth page. One person on the site said it took them 7 years to find the site.
Please if there is anything any of you can do to boost the site on search engines to get it to the front page. If there is any advice you can give which the site adminstrators can use.
There are not doubt thousands of people in this country suffering from RSD who have no one to turn to who understands what they are going to.
It sounds dramatic but you might just help to prevent someone from committing suicide, I know because although I have no memory of it kast Nov after being told I would probably never be able to work, drive or paly on the fllor withmy grandkids my wife and daughter came home to find me with all the painkilers in the house spread out on the bed ready to take.

I will post a link on their forum so they can check n any advice or help you can give.

Thanks Kevin

  WhiteTruckMan 09:17 22 Sep 2010

click here

click here

click here

I dont wish to sound unsympathetic (I'm not!) but but I am one of the many who have no idea what RSD (reflex sympathetic dystrophy for anyone else wondering) is, and after reading your plea for help I was still none the wiser.

I hope those links are of some help.


  sunnystaines 09:31 22 Sep 2010

the trouble with chronic medical conditions that they are rare and that no one understands what you are going through.
when you find a specialized web site with its own
forum and experts is great as you can discuss with people with similar trouble and get valuable help you cannot get elsewhere.

i use one for cluster headaches.

wish you you well with your continued health problems, keep your spirits up dont let it drag you down.

  hssutton 09:44 22 Sep 2010

Kevin I know how you feel, I think I have the same problem, but the consultants called it CRPS.

Initially I was prescribed Tramadol,but after a few days of taking the drug I couldn't sleep or eat and developed a very bad case of the shakes, so came of them. I'm unable to wear jumpers, or heavy coats. Most of the time winter and summer I can only manage a thin tee shirt, in winter I struggle with just the tee shirt and a light summer coat. Anything else is just to painful.

Eventually after a few years I learnt to live with the pain. when it gets too bad I hook up the "Tens" machine and put it on high power.

CRPS is I think the correct name and is a form of arthritis. I don't get any swelling, but I believe many people do. Over the past 10 years I've had all the tests including MRI scans. Unfortunately none of this helps, as the consultants can only offer pain killers.

Due to Tummy problems I've now had to stop taking co-codamol.

The best treatment for the pain for me and many others was co-proxamol, but of course this is no longer available.

Probably what helps me to keep going is that I have a severly disabled daughter, lookin after her is probably the incentive (not sure whether I used the correct word there) for me to keep going.

Several months ago I bought the "Circulation Booster" The reason for the purchase is that my daughter suffers with circulation problems with her legs, but found it was more of a benefit to me than her.

Depression can soon affect you, so you need to find something to take your mind off the problem. I do photography and have to make a real phyiscal effort to go out with the camera. It's a real struggle, but what is the alternative?

As I said the only relief, albeit temporally is the 'Tens' machine

  lotvic 09:48 22 Sep 2010

Just want to say thank you and I'm exploring the site to learn more.

  Kevscar1 09:56 22 Sep 2010


This is a link to the site which will tell you all you need to know.


It is/has been known by many names.

click here

but the name patients have coined for it after their encounters with many medical staff is probably more appropriate.

click here

  Kevscar1 09:59 22 Sep 2010

first 2 do not have forums where suffers can help each other. Belive me MKGH gave me no help or advice beyond telliing me I had RSD, not even what it stood for
3rd is the one I mentioned, long closed down.

  Kevscar1 10:01 22 Sep 2010

WTM sorry one of the parts of this is that it effects you mentally as well.
So having copied the link I meant to post for you, I then lost concentration and did,nt realise until after my 2nd post that I hadn't entered it.
So try again.

click here

  spuds 16:06 22 Sep 2010

Perhaps I am talking well out of line, and I know its not the answer to the original question, but have you considered consulting a doctor and acupuncture?.

  Kevscar1 16:38 22 Sep 2010

spuds. First surgeon didn't know what was wrong. hand Therapists diagnosed RSD didn't say what that meant. Gave me Hot and Cold water contrast therapy second worst possible treatment for RSD also aggresive therapy another big No No. nd surgeon said he would operate if I had more hand therapy and pain clinic. Operations on RSD infected areas can cause to to spread. Pain clinic doctor carried out 5 operations under sedation to insert nerve blocks and had me take 6 weeks of acupuncture. Inserting needles into RSD afected areas can cause RSD to spread. Medical papers going back as far as 1993 say that nerve blocks do not work very well at all. Things like that need to be done within 3 months of the onset. Wasn't referred to him until 6 months after and no treatment for another month.

I was left to find out all this on the internet myself. No support no nothing from the NHS but there own site says this is what I should have got as soon as the hand therapists diagonsed me. (Blue column right hand side of page).

click here

I know probably know more about RSD than the whole staff of Milton Keynes Hospital put together. My own Doctor had never heard of the condition and I had to explain it to him. Luckiy He got me to give him the US website and he had the Practice Manager research it and now all the Doctors in the surgery have some knowledge and understanding Becuase of what the Hospital did I am waiting to see a Vasculer surgeon as it appears the water treament damaged my blood vessel
What I am asking for is for all your help in boosting the UK website to the top so that anyone else in my situation can find them easy enough when they start searching and maybe they can stop themselves getting the wrong treatment

  lucky1 21:21 22 Sep 2010

I can sympathise with Kevscar regarding recognition of chronic illness by the NHS. I have CFS (chronic fatigue syndrome) or ME. Whilst there are many forums and magazines/self help groups etc, it's the big problem of getting your own GP to recognise it that gets me!

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