CRPS. Who oversees treatment?

[huggy73]

My daughter (15) was diagnosed with CRPD in April. She was diagnosed by a paediatric Orthopeadic surgeon who referred her to Paediatric Rheumotoglogist in Alder Hey. It appears that they have rejected the referral, saying she should be seen by someone on the wirral. Who should be overseeing her care? She is under a local phsiotheapist. However this is not intensive Physio ( as we were told it would be). It is a 10 minute chat every 6 weeks about general help (e.g. watching hw she walks to avoid hip pain, How to administer desensitisation, Getting her to go up and down the stairs without crutches). Is this the correct treatment? She has no hel from CAMHS as there is a 15 month waiting list. What other support should we be getting for her and who should be helping us to get it? Just interested in which specialist other people are under for this condition as nobody seems that interested in her at all. Would love to her from any other CRPS sufferers. Thanks

[FRreedman]

Unfortunately there is no correct or incorrect answer to your question. I was diagnosed by a rheumatologist, (with CRPS), confirmed by an orthopaedic surgeon, prescribed drugs by an anaesthetist, invited to attend pain management by a psychologist. I now treat myself, using the drugs of the anaesthetist, and doing some management offered by the psychologist. I am not pain-free, but can manage with the pain I have. Good luck, wishing your daughter well and stay safe.

[huggy73 in reply to FRreedman]

Thanks

[FRreedman in reply to huggy73]

Sorry to be so negative, but that certainly seems to be the way things are in my part of England (Essex).

[Bevvy]

I would be going back to orthopaedic surgeon who made referral and say referral rejected. They can then either challenge that or refer somewhere else. Also they can challenge lack of physio support.If you are getting nowhere with this approach PALS at the hospital and they can support and advocate for you and your daughter.

[huggy73 in reply to Bevvy]

Thanks that’s really helpful. I only know about the lack of referral because I chased it up today and they had nothing on the system for her. We’ve waited 4 months too. I got in touch with orthopaedic surgeon’s receptionist (we’ve officially been signed off from them and she told me when she looked into it. Otherwise nobody would have told us. I think PALS maybe the way to go. Thanks again

[Bevvy in reply to huggy73]

Also your gp (hopefully) won’t be impressed that you have been left (in theory) high and dry…. Gp might be able to by pass some stages and get some action…..??

[rabbits65]

Gosh you must be feeling so sad and anxious for your daughter , there will be help out there somewhere, keep putting your feelers out. Don’t give up at all. See your gp again too , no one should be left so worried .I wish you and your daughter luck in the future and also as well as you both can be. 😊 😊. xxx

[Hidden]

Hi huggy73, I am sorry you're daughter is suffering this awful disease. I have suffered CRPS for 18 years I have only been diagnosed for 4 years. We CRPS warriors seem to get left to it as not many understand the condition. I have only started getting physio about 4months ago after putting a complaint in as I was refused physio for years and they are suppose to be a big part of CRPS patients care. I have received 2 physio appointments and never heard anything since. It is frustrating because no-one understands so trying to find someone to listen is almost impossible.

Contact you're local occupational therapist and ask for an assessment for you're daughter they will assess you're home to see if they can help with alterations to help. Sorry I can't be of more help. I wish I had the answers as it is such a cruel disease.

Take care

[huggy73 in reply to Hidden]

Thank you for your reply. I’m surprised to hear that so many other people are struggling with this too. We’ve had to fight just to get the diagnosis. It seems the fight will continue. Thanks for the support

[Hidden in reply to huggy73]

It's so frustrating I fought 15 years for a diagnosis I got told repeatedly it was in my head and passed about like a ping-pong ball even now with a diagnosis I still feel like a ping-pong ball as nobody seems to know much about it at all. I know there is a couple of rehabilitation centres for crps worth speaking to you're daughters doctor/specialists about. I am not sure where you are located but I know there is 1 in Bath and there is a new 1 in Glasgow to. I have been offered this but I cant go as my partner has Primary Progressive MS and cant leave him for a few weeks. The only care I get is pain management which I have to travel 3 hours there for sometimes a 5min appointment. I pay for private physio to help keep my limp moving as its been a fail with my local NHS physio. Physio should be up at the top of a crps patient's care to keep the limb moving but nobody seems to know how to approach a crps patient and to scared to touch or do to much as the pain is so bad. Also there is a lot of info on YouTube for exercises and information. Its so difficult because no patient is the same.Wishing you're daughter all the best.

[Pat-W]

A few years ago following a knee replacement operation which went wrong I was diagnosed with CRPS. I was told that there are two hospitals in this country specialising in treating it, Bath and Liverpool. I eventually got referred to Bath, but when interviewed I was told that I did not fully meet the NHS guidelines for the diagnosis. Ten years on I am still in chronic pain! The NHS and internet have lots of information but as usual with the NHS you have to keep pushing to find the best department. Best of luck.

[katieoxo60]

Hello there , this seems the norm since the COVid19 virus reared its ugly head or became the excuse for not having done things. We are told to attend the Dr , hospital ect but there are very few services working normally and I am informed that the Doctor proceedure will remain similar for the future. As this posts replies display its all negative and I am legally advised that if you take a more positive route they will just say its because of the virus. Speaking from experience you are lucky if you can get emergency treatment these days. Pain is treated by a management approach of what suits the patient best . Can anyone explain what they mean by community care other than it means only a doctor can agree to your treatment and woe betide if your doctor disagrees. Anyway I hope you get this matter sorted for your young daughter, its not nice being in constant pain no matter who you are or what age. Every best wish x

[Clycat]

Hello,The specialist your daughter needs to see is a Pain Consultant, please ask your GP for a referral. S/he will sort out the pain meds (very important). Don't worry if the first tablets prescribed don't help, there are others to try and the consultant will help you through that. There are also treatments available. A chemical sympathectomy helped me a lot, as did lidocaine infusions. Day patient treatments done by the pain consultant.

I am told some sufferers make a full recovery and with time most improve to some extent but it can be a slow process. Horrible as it is, stick with the desensitization therapy, it is worth it in the long run. For me just rubbing in body lotion to the affected area a few times a day helped and I did get better about touching that area and letting others touch it!

Best wishes,

Jo

[Amkoffee]

I live in the US and can't really recommend a treatment protocol but wanted to share some things I've learned along the way. This disease is terrible. The pain is overwhelming and there is no cure for it. The patients that can, will take opiates to help control the pain. In the US that is generally a doctor whose training is in anesthesiology. The most important thing I would suggest anybody suffering with chronic pain is therapy with a qualified counselor/ psychologist. And the use of diversion tactics. Diversion tactics are things that she can do to keep her mind off of the pain as much as possible. It was really hard for me to learn how to do this but with practice it gets easier. I do things like puzzles, watch TV and listen to some of my favorite music but it has to be something upbeat. These are all things that can be done from bed or chair. And understand that you are your daughters best advocate.

[Konagirl60 in reply to Amkoffee]

Yes, a good distraction is key.

[Konagirl60]

There is a lady on Facebook from Britain. Her name is Victoria Abbott-Fleming. She has CRPS and she is a staunch advocate for anyone suffering this very painful neuropathy. You can learn much from looking at her site and possibly messaging her for advice. I do think you need to see a Pain specialist along with a neurologist and psychologist. Good luck. Your daughter needs much support.

[huggy73]

Thanks I’ll have a look at her site. Unfortunately they won’t give her anything for the pain except paracetemol and ibuprofen, because she’s only 15. So there probably isn’t much a pain specialist can do for her. We did try to get psychological help from CAMHS but they have a 14 month waiting list and she was put at the bottom. But I think I have found another solution for that but will be costly. We just seem to hit a brick wall at every avenue. But we’ll get there I’m sure . Thanks

[Clycat]

Huggy, the pain consultant can prescribe meds that a GP would not and there are treatments available. Ibuprofen and paracetamol are useless against crps.I've had 8 years experience of this now. I found the physiotherapy sessions torture but getting in a warm pool was a revelation. If the crps is in foot, ankle and/or leg, hydrotherapy is definitely worth trying if you can or just walking a couple of widths in a warm pool. I could bearly walk on land but in the water could walk almost normally for a short while.

To others on here who mention the crps centres in Bath and Liverpool - I have no experience of either of these centres but I did go on a Pain Management course in Oxford which I found helpful. It was for a small group of people with various types of chronic pain. The team of physiotherapists and a psychologist were excellent and very knowledgeable and understanding. The course was Mon - Wed for 3 consecutive weeks. Bristol and at least 2 London hospitals were running similar courses when I went about 5 years ago so it may be worth investigating what is available in your area.I

Take care everyone.

[Blackknight1989]

The benefits of health care for everyone! Extremely short wait periods and doctors REFUSING referrals from GP/Orthopedic DOCTORS!! That blows my mind that after a 4 month wait the doctor who was the END/LAST referral for treatment(hopefully) can just refuse. They must know that, as in this case, more than likely a CHILD is going to go without care or a plan of care for a life changing illness! Unbelievable and what a Crock of Shyouknowwhat!!

I would contact both the GP, the orthopedic surgeon and the administrator of the hospital or clinic those worthless Rheumatologists are located and report them as criminally negligent in proper treatment options for a 15 year old CHILD. I wouldn’t stop until the highest ranking politician in whatever country know about the situation. Maybe they wouldn’t care but, by God, they would know about it!