Complex regional Pain Syndrome

atlas46

Hi @hengster

A very warm welcome.

I attended the Walton Centre about 12 years ago, for the four week pain management programme.

I cannot speak to highly about this programme, if you can get a referral for the course, grab it with both hands.

I note you live in London, so it might be better trying the Royal National, which is based in Bath.

I would give Them a ring, there is a telephone number for the Pain Management 01225 473427, ask if you could speak to one their Clinical Psychologist’s.

They will be happy to speak with and explain how they could assist you.

Please Let us know if we can be of any further assistance.

PS
sorry about typos, iPad playing up!

hengster

Hi @atlas46
 thank you for the welcome and advice, that's been very helpful. May I ask what the Walton Centre's pain management programme involved for you? And was advice provided on how to manage and maintain CPRS after you left?
Were you being treated for CRPS?

I did call the Royal National but spoke to someone on a different telephone no to the one you quoted, and will hear back more info next week.

thanks!

Rachel

atlas46

Hi @hengster

No I do not have CRPS.

The Walton programme is a generic course, for those patients suffering chronic and poorly controlled pain.

You have a planned day across a whole range of rehabilitation.

You have group discussions, with specialist in pain management.

There is a great deal of effort, to increase your health and well being

There is good discussion and sharing of insights, between course members.

You could have a look at the Walton, home page for more details.

Keep us informed.

Best wishes

hdeakin

Chloe_Scope said:

Welcome to the community @hengster! @hdeakin has previously mentioned the Walton Centre so I hope she will be able to offer some more information.

Hi @hengster welcome to the forum ? I am sorry to hear that you have been diagnosed with CRPS. I have CRPS and now many secondary complications(dystonia, FND, hypermobility syndrome/EDS, osteoporosis, spiral fracture of neck of femur, resulting in 2 lots of major surgery and plated femur and deformed hip, the beginning of arthritis. My CRPS is improved alot although still a problem however I have a lot of problem with the secondary complications. CRPS is a horrible and extremely painful condition. I am near London too. I have not been to the Walton hospital however I have had an assessment at Bath but was too poorly back then. There is a good consultant who used to work at Bath who now works at Royal national orthopaedic hospital- Stanmore called Dr Helen Cohen who specialises in CRPS and EDS. Stanmore also run a 3 week pain management course specifically for CRPS. I have been there for rehab but not on that program. I have just been an inpatient at Queen Mary's hospital Roehampton. In the wolfson unit for 3 months, I don't know whether I just ticked the box there due to the FND but it maybe worth enquiring, it is a good place. If it is any support I have written about the wolfson unit on my blog hannahdeakin.blogspot.com Water therapy is definitely worth continuing as it is also good for desensitisation. If you can cope with it I know it is hard. My advice would be to try and keep moving and pace as much as possible! I hope this is a little helpful ?

OddJoShoe

My neurologist is Professor Mark Edwards at St Georges, he works with a lot of dystonia patients. I also have dystonia as well as CRPS and this time last year had RBK amputation because of the dystonia. Anyway Mark works alongside the team at Stanmore RNOH so I am hoping that I can get a referral to the pain team over there as my pain consultant has had to leave due to illness. 

hdeakin

I am also under proff mark Edwards at St George's. He is lovely. I was referred to Mark from Stanmore RNOH. Good luck @OddJoShoe

OddJoShoe

I used to be under Mark Edwards when he was at Queen Sq but because he was so nice I followed him to St Georges. 
Is Mark a pain consultant? Is he good? 

hdeakin

I was under him at Queens Square and followed him to St George's too! Sorry I meant Mark Edwards-Stanmore RNOH referred me to him because of my spasms/functional neurological disorder (FND). FND only really affects me in the way of spasms. Prof Edwards said he sees a lot of people with CRPS that also get spasms/FND. 

OddJoShoe

Oh I see. I also get spasms because of my CRPS... not a lot helps them, I just have to ride the storm until they are over!  

hengster

Thanks both @hdeakin and @OddJoShoe. May I ask & to anyone else here,when you were referred fir the first time to pain management or a pain clinic was a mri scan required by the pain management specialists of your afflicted area? Or did they already have mri scans done by another dept specialist to use?

Also, has anyone with CRPS  had EMG and NCS neurophysiological testing done ? If so is it really painful ? And is it really necessary to do in order for the specialists to help diagnose and treat?

hengster

Hello @mossycow, I read your previous post back in 2017. How are you doing now? 

OddJoShoe

I have had EMGs done on more than one occasion can't remember NCS though. I don't remember them being exceptionally painful but I'm going back years now. 

Chloe_Alumni

Hi @hengster, how are you doing today?

Thank you for this @OddJoShoe.

hengster

Hello @Chloe_Scope, not too bad today thank you. I went for my third self-hydrotherapy session on tuesday and it was better than the last two. I was able to walk alittle better than before in the water. I've also read about pacing in order to prevent flare ups. Had the EMG test done yesterday and it wasnt as bad as i thought it would be! @OddJoShoe, sorry i didnt realise until before my neurophysiological tests that NCS was carried out as a part of my EMG test. NCS is nerve conduction studies. I had MRI scans done as well. So hoping to find out some results soon from a neurological point of view. How is everyone else on this discussion doing?

hengster

Hi again, i'm assuming everyone who's got CRPS, had had to go to their local hospital pain services team first, is that right? I'm waiting for my referral for pain services. But i'd like to know what kind of things are involved and what various types of professionals get involved to help and how they help with someone with CRPS? Thanks!

hdeakin

Hi @hengster I was diagnosed as a child and the local pain team would not see me as I was under 18. From friends I have heard there is things like nerve blocks and other drugs alongside education about pain and methods of trying to manage pain including learning to pace, relaxation, mindfulness as well as support from psychologists and sometimes physiotherapists.
I am glad the hydrotherapy is going well and the tests were not as bad as you thought. Best wishes, 
Hannah 

Chloe_Alumni

Hi @hengster, really glad to hear hydrotherapy has been beneficial, how are you doing today?