Will dd ever recover from CRPS?

[SasherinSuite]

I first posted about dd here.

Over a year later and she is still in pain, as well as suffering from anger management issues, anxiety, OCD and depression. She is still self harming and having problems making friends at school as the other girls think she is weird [her words] because of her odd behaviour. She still can't walk properly and can't run, jump etc.

She is now under the management of the pain control team at GOSH but it feels like everything she tries makes no difference. She does her exercises every day but they have not made any difference. In fact since she left the rehab programme in August any progress has stalled and even retarded.

She tried Amitriptyline but it hasn't made any difference.

We finally got a referral to CAMHS and she was classified with level 3 needs. However, her support sessions won't start until the end of May.

We have started paying for private hydrotherapy as well.

I don't think there is much else we can do and I am slowly coming to the realisation that this will be her life from now on.

Hi, my now 15 year old ds doesn't have CRPS but he does have chronic pain syndrome and hypermobility syndrome. He started with the pain after a fall when he was 9 and we went through all sorts of hell trying to find out what was wrong and get a diagnosis. After about a year he was referred to GOSH, by then he was completely off school and could not walk up stairs or hills or even walk very far on the flat.

He went on the 2 week physio rehab at GOSH which got him more mobile but didn't sort out the pain issues. GOSH said this should be done locally via CAMHS but they said they hadn't the expertise and they didn't want to take him on. Eventually they were pushed into it as GOSH felt local services were more appropriate but CAMHS said he was "unsuitable" for CBT and so that was it.

He's tried pretty much every pain killer going, including the anti-epilepsy drugs and SSRIs (prescribed by our local paediatrician). The only thing that worked was opioid patches but probably only because he was so sedated he didn't notice the pain - or anything else much! He couldn't continue to use them as he was barely functioning.

My ds gave up the physio exercises a few months after the rehab course but a year later he started them again and did them faithfully for 18 months but never got on top of the pain. He keeps having bad pain flare ups and goes backwards. He doesn't do exercises now but does try to walk every day, usually in the evening as he's much worse in the mornings.

There is no integrated pain service for under 18's where we live (there is for adults), and his problems have been ongoing for over 6 years, so I asked for him to be referred to Bath Pain Services, based at the Royal National Hospital for Rheumatic Diseases in Bath. Among other things they run CRPS courses so this might be some help to your dd. My ds will be going for an inpatient course for adolescents with chronic pain. He's had his assessment appointment there and I was impressed. They were very thorough and I felt the psychologist really understood his situation. Unfortunately, as they are a national resource, there is a long waiting list for the courses so I don't know when he'll get in. He's been off school totally since November (it's his final GCSE year) and he's never been full time in school since the end of Yr 5 at primary. If they can help him to sort himself out/cope better it will be fantastic as he's hoping to go to college and needs to get in there.

I believe there is very little pain support for children in most areas. I personally found the GOSH course did not really deal with the psychological issues involved in chronic pain and relied mainly on physiotherapy. Although the physio got ds more mobile the improvements didn't really sustain as he had no coping strategies when things started to flare up again.

I don't have any direct experience of it but there is/was a local girl who has it and has been on local tv and newspapers charting her progress.
She went to the states for some treatment and it seemed to help. I've linked the latest article
www.thornegazette.co.uk/news/local/amy-s-joy-at-first-time-out-with-mates-in-three-years-1-4033276
It sounds like a horrible condition i really hope things improve for your dd. Sorry I'm not much more help but i just remember that local girl kind of stuck in my mind. There might be more articles out there with further info.

Thank you for the link fairgame. It sounds like she had it much worse than my dd so I have that to be grateful for. That sounded wrong but I hope you know what I mean.

Runningtokeepstill - I'm sorry to hear about your ds. I can't begin to imagine how I would feel after 6 years of this . It's 'only' been 17 months for us but I'm already finding it hard to remember what life was like BP (before pain). I've heard very good things about the Bath programme so I hope your ds doesn't have too long a wait.

We are so lucky in that she is mobile and hasn't missed significant amounts of school (just days here and there for appointments) but it's the pain that is very difficult to deal with....for all of us. I hate to think of how this is affecting my other 2 dcs especially ds who is taking GCSEs this year.

I've been on the phone to GOSH this morning and they're going to try her on Pregabalin to see if this makes any difference. I'm not optimistic though.