Anyone have experience of Neuropathic pain or Complex Regional Pain Syndrome?

[bunjies]

dd (11) is being referred to a Paediatrician as the Orthopaedic dr cannot find any musculo-skeletal problems with her knee despite her being in significant pain whenever she tries to straighten her leg and she cannot bear any weight on her leg. Physio cannot assess her until she is given proper pain killers. She's had x-rays & an MRI and nothing is obvious. Dr thinks it's CRPS but it will be some time before we get a referral to Paediatrics. In the meantime dd is having to use crutches to get around and has to be driven everywhere. Also means she isn't able to participate fully in school (no PE, school trips, plus numerous days off for hospital appts) and will probably have to pull out of the end of Y6 residential trip to the Isle of Wight in June . It's so frustrating for her and us and I just wondered if anyone had any experience of this either with their dc or themselves.

Can anybody help us please? My son fractured his foot 3 months ago as a result of a fall from a loft ladder. He was in & out of plaster for 10 weeks whilst orthopaedics decided if it was fractured or ligament damage & then was finally discharged 4 weeks ago. Since that point his foot got trodden on at school three weeks ago & he's been in excruciating pain ever since. He can't weight bear on his foot, it changes to purple every time it's not elevated & it's hyper sensitive. He's been diagnosed as having CRPS1. His pain is so bad that he's currently on the children's ward at our local hospital on intravenous morphine, gas & air and has just had to be sedated to get him to sleep :( He can't start any type of physiotherapy as his pain is too intense. There isn't a paediactric pain team at our local hospital so the adult pain team are seeing him as a 'favour'. Where do we go from here? Has any other child with CRPS been in this level of pain? We are desperate for any advice :(

I feel for you. As I understand, my dds "central sensitisation" diagnosis has a lot of similarities with CRPS. Yes, the pain is unbelievably severe. In our case, morphine ( and anything else for that matter) had no effect. Although luckily it did eventually settle of an evening to allow sleep but the slightest movement set it off for hours. The pain only started to slowly reduce over months of very gentle physio (very traumatic) and gabapentin. There is still a sensitivity even 12 months on and we are now battling with the resultant severe disability. I realise that all this doesn't sound comforting but I think our journey has been longer than most. I would strongly urge you to get referred to a specialist paediatric pain clinic as local services generally do not have experience and unfortunately waiting for the pain to subside with conventional treatment doesn't work. If your son is in too much pain to travel, maybe your local services could speak to them for advice. I hope you get some help soon.

Hi I posted about my son in August last year. He landed up spending two weeks at Red Cross hospital in the pain management unit. They operate on the same protocols as GOSH. They got him walking without crutches and lowered the pain but it never went away. We stopped all pain meds as they were zoning him out. He missed school from June last year until May this year and even now he hasn't made a full week. Pain is impossible because you can't see it and his age (15) doesn't help either. My friends who have experienced this say 18-24 months recovery but a huge part of recovery is attitude. You have to want to get better. For my son it's become who he is and he has become completely reclusive. He uses a TENS machine 24/7 which he does feel helps him. Having been in a flat spin for a year I have said when he wants to actively help himself we will do whatever needs to be done but I am not paying for physio only to have him cancel sessions and be rude to therapists.

Interesting to hear someone putting a timescale on the situation. A year ago I would have found it unpalatable but at least I could have managed expectations. I do think it takes a special physio to understand and work with adolescents with these conditions. It also takes immense courage on the part of the patient. We too have had difficulties and much frustration. Please could you tell me more about the Red Cross hospital. I haven't come across this and we are desperate to get my daughter independent with crutches. Thank you.

Thanks for the input. We ended up taking my son off the morphine (& most of the meds he was on yesterday) as they were creating more problems & not helping the pain. He stopped breathing at several points as his respiratory system was being affected by all the sedation & ended up in the high dependency unit :( Today he has been put on a new form of gabapentin (sorry I can't remember the name) that is supposed to be faster acting, diazepam & amitriptyline at bedtime. He is still in intense pain & I'm finding using distraction techniques to be very hard & exhausting.
We would really like him to be transferred to a specialist children's hospital but our nearest two (Manchester & Alder Hey) have refused to accept him on the basis that they've given advice over the phone & wouldn't do anything different to what's bring done at our local hospital already. I've briefly googled private options but have drawn a blank. Does anyone know anything about private treatment available? The children's ward we are on mainly caters for babies & toddlers with minor ailments & the thought of my son being here in the pain he is in is frightening me.

This may sound crazy, but would it be possible to look towards managing your son at home? Obviously you want to know that he is safe on the meds. It's just that it may take sometime for the pain to come under control. You will feel stronger at home and distraction techniques are easier. Also your son may feel more at ease at home. My dd felt ashamed of her pain on the children's ward which added to the stress and hence the pain. We moved a bed downstairs at home for a few months until she could get upstairs. None of it was easy but in hindsight we should have left hospital sooner. You may need to consider access to physio and other services and it's possible that is more accessible as an inpatient. The tens helped my dd a bit when turned up full. I haven't come across any private options unfortunately. I have a good book which has helped my understanding- I can get the name if you want it. If you want to pm me I can give more info about local services that may help. Best wishes.

Thanks walkingthrotreacle. I would pm you but I don't know how! The name of the book would be great thank you. I'm struggling to cope today :( It's probably lack of sleep but I just feel so sad for my son. Not only the constant & severe pain but also all the things he's missing out on at what would be his last week at junior school. It's his birthday on the 30th July. I know I've got to be strong but I just feel heartbroken.
I aim for us to leave hospital asap but his medication is still all over the place. I know he's still going to have lots of pain when we leave but at the moment they're still experimenting with things.
Can I ask how long your daughter was in acute pain for? I know this is a long haul thing but I just need it to be a bit more bearable than it is right now.
Thank you for helping. As you know yourself there's so little help out there I don't know where to turn.

I really feel for you - it's a nightmare feeling so unable to make things better. The book is Conquering your Child's Chronic Pain by Zeltzer and Blackett Schlank. I will pm you later with other info that might help you . Hope you have a better day.

Just to update...we were finally transferred to Alder Hey last night. It's such a relief to be in a hospital that has dealt with children with crps. I'm so hoping that this is our road to recovery.

My dd has a very complex illness and one of her severe unmanaged symptoms is neuropathic pain which is currently unmanaged. I sympathise massively with you and her. One of the hardest things is to be unable to help a child in pain - or in my case, cuddle her, which causes her to scream in pain. I don't have any specific advice but suggest you try to get to a very specialised pain clinic to see if they can help,at all. Amitriptyline is the first drug of choice at the right dose can help but there are others too which may help- not going to say names as different for everyone. I hope this helps you- xx

A very helpful series of posts, my 11yr old is under the pain management clinic at GOSH for musculoskeletal / localised neuropathic pain. We/they believe this has been caused following repeated sprain of her ankle playing sport - first pain in the ball of her foot 3 years ago and with repeated injury seems to get worse . She now cannot put any weight on the ball of her foot or let you touch it and her big toe joint has not moved for 4 months now. Local physics have diagnosed CRPS but GOSH say she is missing some indicators (swelling /discolouration) After a 2m battle with GOSH (they seem to believe Physio and coping strategies are the way forward) we were prescribed amitriptylene (10mg) which we have recently increased to 20mg - daughters constant pain had reduced for 8/10 to 6.5/10 and has managed 1 full nights sleep (progress!!). We swim twice a week, have acupuncture (not sure it is doing much) and do home exercised (massage, mirror therapy /desensitisation etc) 2/3 times a day.

She came off crutches over Xmas and has just managed a full week at school - very proud of her - it's amazing how much walking is involved at secondary school. She was fit for nothing though Friday afternoon but pleased she made it to Friday. School are very supportive and allows her to wear boots, sit out PE, put her foot up as needed, leave class early to get to next one, use the lift if needed, jump canteen que etc!!

We have been advised that with intensive (5-6hrs a day) of Physio this is reversible...

We are on the wait list for inpatient intensive Physio treatment at GOSH and after being told 8 week wait, then a couple of month - we are now being told July!! Rigs will be 9months since being put on the list...We are at our wits end and really frustrated with the lack of support /communication from GOSH. I understand NHS is under resources etc but this is a child's wellbeing not a tick in a box. (Rant)

....now looking into anything and everything else...B12 supplements, gluten free diet - she has never been tested - just an assumption it's related to a sports injury

..any tips/advice appreciated
Thanks in advance

Hi, I just popped on here to see if anyone had posted anything about CRPS! My dd who is 10 was diagnosed with this last year when she was 9. She fell on her shoulder in the summer of 2014 and developed horrible pain down her full arm a few weeks later. She wasn't diagnosed until 4 months later after x-rays and blood tests showed nothing else wrong. In October last year she got shingles and was off school for 5 weeks. It took 4 weeks to diagnose her with shingles. During this time the CRPS spread to her left leg and in the past few days to her foot. She was given crutches yesterday and has an appt at Yorkhill children's hospital in Glasgow on Thursday. It's interesting to read how others are being treated for this. My dd has been on 1000mg of gabapentin for nearly a year now with no improvement. Physio was helping her arm but things have got a lot worse since her leg got affected. kolly I'm sorry you're not getting much help from GOSH. It really seems to be luck where treatment is concerned. There is a facebook page for CRPS which I have found very helpful.

Hi kolly and flamin.

I'm sorry to hear you are also going through this. Unfortunately dd's situation hasn't improved and in fact has regressed.

Things started to progress somewhat after she was seen by the pain clinic at GOSH. She finally got the referral to CAMHS probably after I made a huge fuss about it and GOSH put pressure on them. From being low priority she was assessed as being level 3 (one down from sectioning ). She started seeing a Psychologist every 2/3 weeks from late Spring 2015 but to be honest the talking therapy wasn't working to the point where she has now been prescribed anti-depressants. She has been taking them for about 3 weeks now.

She also wasn't progressing on the physio side of things so following a discussion with the pain team at GOSH it was agreed she would have a procedure called "stretch and cast" followed by another stint of intensive physio rehab. She had the procedure on Thursday and starts rehab again tomorrow.

If I can advise anything it is to push as hard as you can to get the rehab at GOSH. Keep on at them all the time. Ring for cancellations every week and hassle them. I've found that sadly it really is a case of who shouts the loudest gets the help.

It's been 2 years now and I think this is dd's last chance to beat this. We've had the discussion with her that it's better for her to be in pain but walking properly than being in pain with a bent leg so we'll just have to see how strong her resolve is. Ultimately it is down to her. No one else can do it for her. Hopefully the ads will help with her mental state as she needs to be strong.

I'm sorry I haven't got anything more positive to report .

Good luck with the rehab and with the appt. in Glasgow.

I am GOSH no. 1 pest... Phone and email least once a week each - have now started to send them our foot diary! Pain levels back up to 8/10 after a week at school with no crutches....she's not walking properly without them as puts all weight on the side of her foot.... It's back to crutches tomorrow as I don't think she can cope mentally with pain. At least on crutches she does keep her foot lined up properly and on the floor so the rest of her leg etc is not all out of alignment, also gets to leave lessons a bit early to avoid corridor chaos..

Can I ask what CAMHS have provided in terms of support?... Not sure I know what CAMHS do?
Will also have another look at Facebook, I think I saw the site a while back but had forgotten about it
Thank you!!

I think CAMHS is a bit of a postcode lottery. My ds was referred to them by GOSH after doing inpatient physio rehab. He has hypermobility syndrome and chronic pain syndrome. CAMHS refused the referral at first saying they couldn't help. Then they were persuaded to take the referral but after assessing him said again they couldn't help. I think different regional CAMHS have people with different areas of expertise. In our area they didn't seem to be able to deal with dc whose conditions involved physical and mental factors. But in other areas I think they do help.

I wouldn't mind CAMHS saying they don't have the expertise locally if they were able to refer to someone else but they don't.

We have experience of CAMHS with our ds who has aspergers. I wasn't overly enthusiastic about them. My dd had previously been referred to a medical psychologist at the hospital because her condition is a medical thing rather than a mental issue. She was discharged by the psychologist who said she was doing amazingly without help. However since things have got worse her pain specialist wants her to be seen again. Just so she can get help with her pain. Could you ask about a medical psychologist rather than CAMHS? I found the medical psych to be much more sympathetic and a not in the least bit judgemental unlike camhs who seem intent on blaming everything on the parents and aren't so great at actually helping.

Hi we have just been at the children's hospital in Glasgow today re similar. My son has bilateral leg pains following a ? Hip adductor strain 6 weeks ago. Nothing on bloods, or X Ray's- MRI shows fluid in pelvis only. Started in lignocaine patches today and hoping that will give some relief. Has missed 3-4 weeks school
But has managed mornings this week with aid of crutch. Been awful seeing him in such pain and trying to keep him as mobile as possible. waiting for physio appointment now too. Not a pleasant couple months so I feel for you all that have been going through this much longer

Hi, quick update, my pesting paid off and we start on Monday on the GOSH inpatient programme. Daughter had to convince them she was mentally prepared for it before they would put her in the programme, which really helped her put things into perspective - tall order for an 11yr old!! I am immensely proud of her and know she will try her hardest next week!! We are both apprehensive but keen to get on with it and with a positive attitude we are hopeful that she will be walking properly in a few weeks. She very lucky to have a very supportive school and peer group that have helped her through the last few months of waiting which have been hard.