Does anyone on here have RSD? Also known as CRPS.

I've had RSD since 2002 and the only person 'I can talk' to is in USA and Canada on their support groups. There used to be a uk based sit but that closed years ago. There are more and more people being diagnosed with RSD and yet still GP's and A&E consultants don't know anything about it. I have RSD in both legs, have been on tramadol since 11/01/2002 , my son was born dependent on it! Anyway, enough about me - want to know different meds/treatments people are on. I feel my life is slipping away from me ...full of pain.

[Hidden]

HI livinghoeaston

I have had CRPS since 2010 u are right that a lot of doctors and A&E staff do not know a lot about it also I have been looking for a support group but I yet to find one it would be nice to meet people face to face that no what u are going thought

[Hidden in reply to Hidden]

Yes it would be good to meet others. This condition is terrible. I've only just found out that there is a SPECIALIST UNIT DEALING WITH RSD/CRPS in BATH. UK.....can't quite believe it! For me, the ignorance and isolation just add to the physical pain.

[Hidden in reply to Hidden]

Hi lvinghoeaston

There is also a specialist unit at the Walton centre in Liverpool, I have been there a few times

[Calceolaria]

What is it?

[Hidden in reply to Calceolaria]

It's a chronic pain condition. rnhrd.nhs.uk/uploads/files/...

This is a new leaflet on the condition.

[Heorte]

Have you come across Trudy lapinskis? She's active in UK. Sorry, but that's only help I can offer. Good luck.

[Hidden in reply to Heorte]

No I haven't , but I'll try to find her on line....thanks for the info.

[BeccaWhite]

Yes I have it, have done for 21 years.

I am afraid that there seems no-one to talk to here about it nor has there been great strides made in knowledge of the medics I have come across over the years.

I gave up long ago !

The RSD Association that I think. You made mention of, did indeed close, sadly. I had to contact them once, they even thought I had an earlier bout of RSD aged six.

Becca.

[Hidden in reply to BeccaWhite]

Have you been to the CRPS Royal National Hospital for Rheumatic Diseases website? It's a blooming revelation! I found it yesterday! Here's a link:

rnhrd.nhs.uk/page/79

Keep fighting x

[BeccaWhite in reply to Hidden]

I haven't looked in there, no.

But I did contact the old RSD Association in about 1996 or so. They were most helpful and we discussed if I would be a candidate for referral to a specialist unit.

They felt, as I had intensive Physio at the onset of the disorder and had stuck to that religiously ever since at home, and was coping as best I could, with the help of my GP, I wasn't really a candidate.

I think they were right !

I just carried on alone.

At the moment I have a foot that has clawed. I was sent for X-ray's last week.

[aliceinwonderland]

Hi, I had an injury in 2005 and been in pain since. Now told got impingent syndrome but consultant saw arm and mainly hand going blue after movements and thinks may well be crps as well as pain syndrome as got neck and back problems too. Cant help thinking another name but treatment the same. Disappointing as thought could have surgery to relieve shoulder and arm problems but seems worry is could make widespread pain even worse. I was told the hospital for rheumatic diseases leading place for crps...have you been there...wondered do they have a support group at all you could contact? Hope today is a good day for you.

[Hidden]

Can all f you please contact me on [e-mail]. my MP Iain Stewart has been fighting for us since 2012 and got a debate 9/7/2013 however Norman Lamb broke his word to take action. We are now trying to form a group big enough to force action.

[Hidden in reply to Hidden]

Email just sent!

[Hidden]

publications.parliament.uk/...

[Chawner]

I feel very much the same, I'm not myself anymore. No confidence, no energy , can't sleep and lots of pain all the time and today I said screw it and did some yard work that I've been wanting done all summer and now I have over done it ! Of course !

I would love to say that I'm going to egnore how my body feels and what's head says and do what my heart is telling me but I'm scared I'll end up worse off in the end. CRPS really is a hidden illness . It's horrible .

I'm still trying to find out how to loose weight on all Theresa too.

When I wake up it feels like I have been on an all night bender , it's a terrible feeling.

[Hidden]

This is the short version of what we are trying to get the government to do. Please Help.

1 Changes to NHS Choices pages so they are accurate and show the 3 treatments which must never be used

2 An e-mail to every Trust Hospital Clinic Surgery and Dentist telling them about CRPS and the 3 treatments which must never be used

3 Teaching CRPS in every medical school

4 Debate in the full house PM and Sec State for health to meet sufferers then press conference

5 Office to collect collate and disseminate papers from around the world.

6 4% of any NHS underspend to be devoted to CRPS in 2012 that would have been 36 mill they spent 200,000 Cancer got 5,81 billion

7 to use me as a guinea pig for a possible cure

If you want full details of the steps or documents to send to your MP then e-mail me at [e-mail]

[Hidden]

Sorry to say...what three treatments?

[Hidden]

Ice, Hot and Cold Water Contrast Therapy, both of these will cause permanent damage to the blood vessels and restricted flow. I know of 2 UK cases were the Ice damage was so bad they developed gangrene and had to have amputations to save their lives. I have white lumps in the veins, some have virtually disappeared while other are blue and swollen. The large vein on the back of my hand now does a large dog leg.

Aggressive Physio can causes spreads and ruin any chance of remission

[moorebluesky]

Hi all,

I have been searching for a support community for years now. Diagnosed with CRPS in right foot, which has now spread up to my knee.

There doesn't seem to be much in the way of supporting people with CRPS which is awful as it goes hand in hand with depression.

I feel like this has taken everything from me especially seeing as there is new research to suggest that this is perminant, although patients can go into remission.

I have recently had an assessment at St Thomas' in London and have been accepted for their pain INPUT residential programme where they help you to manage the pain and achieve goals.

Fingers crossed this works as I've had nine nerve blocks and two steriod injections only to find out that they don't actually work.

The problem is that this is becoming a problem with the whole nervous system and not just one nerve that it was previously believed to be.

If anyone would like to contact me feel free to do so through here and I will then pass on my email.

I would very much like to help people feel less alone with this as there are a lot of us and it is horrible going through this alone.

[Hidden in reply to moorebluesky]

only just been diagnosed as a possible crps, although only a big toe, i cant stand at all as it 'starts' and cant put foot on floor when sitting down. i know i am not as bad as most people on here but i also feel my whole life has been taken away from me. no hols, no gigs, no gardening, walking etc cant help the family. have felt suicidal as my whole future is harder to see. Some sites seem to say mild cases can ease off and recover in time, am pinning hopes on this

tj

[moorebluesky in reply to Hidden]

Some cases don't spread if it is caught early enough. I was unfortunate as are most people with crps.

Don't feel guilty that there are people with situations deemed worse than yours as it is a horrible syndrome and any form of it no matter how small is appalling and can cause tremendous amounts of pain and difficulties. I myself use an elbow crutch to walk as I can't walk unaided.

Remember to visit your GP to if you are having suicidal thoughts. I was having these too and my GP started me on antidepressants and although I still feel depressed the suicidal thoughts have gone.

Hang in there TJ.

[Hidden in reply to moorebluesky]

thanks, spoke to doc, speeding up on the follow ups, physio and pain clinic

[Hidden in reply to Hidden]

Try if you can to keep moving, even a few seconds at a time. This disease spreads if you stop 'using' the affected limb. I was told in 2002 that I'd be wheelchair bound within 5 years (if i didn't lose a leg before that)....instead I got married, had a son, learnt about coping mechanisms and kept going. It's a hard path, most days are a battle, but you have to keep moving despite the pain. Little and often if you can. Avoid huge temperature changes, that causes the pain to go off the scale. Good luck. X

[Hidden in reply to Hidden]

thanks, waiting for physio/orthopedic appointment, then pain clinic, now i must be a bit more positive and presume it will at least become better than it is now

[GRUMPYA]

I was diagnosed with regional pain syndrome in my arm 20 years ago but it subsided into a nagging pain that is my normal but 6 years ago i had a botched angiogram that caused an aneurysm whichthey again botched as it was leaking so yet another surgery and I was left with really awful pain in my right leg. They cameto the conclusion they had damaged the nerve but as usual with the nhs I was treated like a pariah and they did their best to make me look like a nutter or like I was going to be after money. I hhaven't been able to walk since and am in constant pain, not an ache but the sort of 10 out of 10 pain that makes you rock backwards and forwards and cry, just like acute toothache, but from the hip to the knee. Now 6 years on i cannot bear my heel to touch the ground, I have to sleep with it on a cushion so it doesn't touch the bed and if a sheet touches it, I feel like I'm being electrocuted.

I think this nerve damage has changed into regional pain syndrome again only not the mild version i had in my arm. Morphine can help if i am at rest but if i move then it hurts again.

What do other people who have posted on here think.

[Hidden]

You must try to keep moving. I sleep weirdly!! No covers on legs at all and feet off side of bed! My husband has the patience of a saint. Have you been on a pain management session? It helped me. Also know your limits but keep moving. I was encouraged to get a little dog, for days when I couldn't find the fight. Sounds stupid but it's helped me. I manage a little walk each morning, son then goes to school, I then take all my pain meds - keep still until 2-3ish, then my son comes home and me and little dog sit in garden throwing the ball. That little bit of movement keeps me going, don't get me wrong some days I want to throw the towel in and call it a day. My two grown up daughters encourage me to do little and often and not do too much. I used to do loads on "good" days only to be laid up for days sometimes longer because of the excess. Now I do it my way! Good luck.

[Firefoxie007]

Hi, I've had RSD/CRPS, and I was under The London National Hospital, in Queens Sq, London. I went through hell, trying everything, even the machine that is put into your stomach via putting Electric probes either side side of my spine, then while awake they sent electric pulses down my spine to my leg. Then when they got the right current, they push the probes and attached it a machine through to my stomach. You could control it with a remote, so you could turn it off when you wanted to. It was great until I went under a electrical power line, the machine went on automatically on full charge giving me an electric shock, This did not happen until I was going on holiday. I got to Heathrow airport and I was staying at the hotel until my flight the next day. But the current was so strong it just turned my machine on. I completely turned it off. It was fine until I reached to Thailand and ALL their electrical lines were 12ft high, so you could imagine what my holiday was like. I then had it removed.

I tried to start a group up, and got leaflets from the RSD awareness group and asked the hospital to leave them to give to patients, but they completely refused. I also have APS, and many other health problems and I'm constantly in pain.

I hope someone knows of any groups in North London, Or the surrounding areas of Islington, it would be great even to start up a group. (Sorry for the long message), I thought it would be better explaining what I had done).

Regards

Tina