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.

Bump

Hi, I had this when I was a preteen, it started at the same age as your dd. I hope you don't mind but I have name changed as the condition is so unusual I would out me under my normal name straightaway.

TBH I umed and ahhed over whether to reply as I wasn't really sure I could help much. I was lucky in that it did go away, it often does in kids, but I wont lie it was a difficult period in time.

My thoughts really do go out to your daughter, I have to say if she can keep it moving and keep mobile on the crutches she really is doing awesomely!!!

Hi,
My dd aged 12 was diagnosed with neuropathic pain in her stomach. She had peptic ulcers and although they have cleared up, she continued in severe pain which they believe is due to the nerves still sending the wrong signals. She is now on amitriptyline which was used as an anti depressant but now is more commonly used for neuropathic pain. She is much better now, not sure whether it is due to that or just that's she just getting better! Dd was off school from beginning of September to January, it was a horrible time and very stressful. The school said that she was "a school refusal" even though she tried desperately to go in!

I have CRPS. If I were you, I would push to be referred straight to Bath to the CRPS treatment service to get the intensive input that is the best treatment for it, as well as the coping strategies to deal with it.
There aren't any definitive tests for CRPS, so diagnosis does consist of meeting the criteria

sorry, pressed post too soon. meeting the criteria, rather than anyone being able to say 'yes, thats it'.

BTW, I would advise against googling about CRPS.

Thanks for all your replies. To be honest I wasn't really expecting any as it is such a difficult thing to diagnose. Unfortunately I've already consulted Dr Google - I couldn't help myself . I really hope ishe hasn't got this and they've missed something. We're in it for the long haul though as the pain has not got any easier after 5 weeks. We have a referral to a knee specialist in case there is something structurally wrong that may have been missed but the referral to the paediatrician is to discuss pain management which will hopefully enable her to do the physio.

CRPSpost - did you have to take medication? The reason she can get round is that the pain is very localised in her knee. It only hurts when she attempts to straighten her leg or tries to walk on it. She can kneel and bend it in all sorts of other ways.

Please make sure they've checked her hips - you can get referred pain in knee when actually it's the hip that is the issue!

Yes she had her hip x-rayed a couple of weeks ago as the Dr wanted to rule that out.

I'm still not convinced it is CRPS though as she's not in pain all the time.

Please don't google too much!!! CRPS is such a wide spectrum and the way you can be affected is so varied. To be honest I couldn't decide whether my experience would be good to hear (I got better) or bad (It took two years although I only suffered in winter, and very extreme). It can be a dumping ground diagnosis for anyone in pain. One of my friends was eventually diagnosed with juvenile arthritis, and after that point received very good treatment

In my case it was a strained ankle that started it off, my CRPS was made considerably worse by the fact it was immobilised in a cast for about a month. my foot was extremely painful to touch, and vibration (of any kind including sound) and temperature. It wasn't weight bearing. it was misshapen, weirdly hairy and mottled coloured and a weird temperature

I was treated my a wonderful if somewhat floundering consultant from the pain clinic. I too took amytripline, don't know if it helped but it certainly wasn't a bad idea. Mainly I was given Intravenous guanethidine block which allowed me a period pain free - initially a 24 hour but it built up to 5 days. Initially it allowed me to get physio in and get back to walking, eventually I got into the routine of having the injection on a Monday getting into school for the rest of the week before the pain returned at some point on the Friday. I had just over 50 of them all bar two under generally anathesatic because they litarelly couldn't get near enough to do it without. I did do a residential trip in the period

When I was around they we talking about centre's of excellence based on the Australian model. Mum ran a national support group for many years after, and is was discussed at one of the conferences. I give serious thought to asking for a referral. Some friends had success with oxygen therapy, but that is expensive.

just a thought with physio please don't let any physio push your daughter through the pain barrier. CRPS is a very different kind of pain than you normally get. the good physios will be able to exercise up the pain barrier and not beyond

My friend developed this as a teen (very severely affected now), accurate diagnosis is essential! Usually it starts with an injury - has there been one?

I would go to a very good/highly recommended osteopath to see if there is anything going on elsewhere causing it.

The agonising knee pain I suffered as a teen (would wake me up at night) is to do with my leg muscles not being equally developed. Finally in my 30's I got orthopeadic insoles custom built that helped and a consultant told me to start cycling - never looked back!

I totally agree with random's post

including the osteopath recommendation

My understanding is the worse thing to do is immobilise so somehow there needs to be some movement going on.

yes keep moving!

The cast was a disaster! !!

I meant to reply to this yesterday evening but got sidetracked by 24 hours in A&E.

We're getting her to try straightening out her leg as much as possible but it causes her so much pain it's very distressing. It's all so worrying.

I really hope they get to the bottom of the problem asap.

Thought I would provide an update.

Since the beginning of January dd has been seen by 5 different doctors - 2 in A&E, 2 Orthopaedic and a Paediatrician.

She has been assessed by a Physiotherapist who could not help her because she was in so much pain. She is booked in for a course of acupuncture.

She was prescribed heavy duty painkillers by the Paediatrician (including Tramadol ) but none have made a dent in the pain.

She has had blood tests, X-Rays and an MRI scan.

After all this? The good news is that there is no structural cause for her pain. Neither does she have bone disease, auto-immune disease etc. Bad news is she is still undiagnosed.

She has now been referred to Great Ormond Street Hospital Rheumatology team .

I suspect she is suffering from Chronic Pain or Idiopathic Musculoskeletal Pain

Whatever it is we're in it for the long haul. The treatment is months of intensive physical therapy, occupational therapy as well as psychotherapy.

She is starting secondary school in September & all I can think is what a fucking brilliant start. I feel so helpless and frustrated. Oh, and I have to push every time to get her appts. I can't believe this is going to be our lives for the next 6 months - year.

Hi, I'm in a similar position to you. DD is 10 and has spent the last 13 weeks on crutches after a fall from her pony (thank God we only share the pony as she's not been able to ride since!).
We've done the x-rays, painkillers (only paracetemol and ibuprofen - nothing that actually worked), more x-rays, crutches and physio who couldn't do anything because of the pain. Separately tried chiro and acupuncture. Physio pushed for an MRI which was clear so A&E wrote her off and sent her back to physio. Thankfully a great physio (well 2 actually) and a bolshy mother (that's me!) got her to see a trauma and ortho guy who said he thinks it's CRPS. She had a bone scan this week to finally rule out anything structural and we see the consultant again on Tuesday. Between me, the physio, the GP and a rheumatologist we've managed to get her prescribed Gabapentin - no idea if it's helping yet as we're only on day 3 but it surely can't be any worse than paracetemol!

She hates not being to ride the pony but has only managed a max of 10 mins sitting on her and that ended in tears of pain :( So frustrating for her sigh

I emailed some people in Bath today so hoping that may result in something useful.

Fingers crossed we and you get somewhere soon and it's not long long term. Feel free to get in touch if you want a supportive ear - sounds like we're going through the same thing with similar age kids.

Wait and see what the rheumatologists think.

If it is still felt to be a pain issue there is a good pain service based at GOSH.

Pain doctors usually look after CRPS but I assume there is still diagnostic uncertainty.

Hi I am from SA. My perfectly healthy 14 year old son fell at the beginning of May and hurt his left hip and lower back. it seemed pretty minor until his left leg started collapsing. Since he was at boarding school it became a slightly more difficult situation to manage and through school miscommunications and SAN miscommunications he never got the physio treatment I had requested. Three weeks later his leg collapsed again and he hurt his knee badly. Since the middle of June he has been walking with a crutch. Despite me thinking we had hit rock bottom, little did I know. He is now unable to stand without support, his hip, knee and now lower back up to below his shoulder blade are in constant pain. He sees a physio three times a week, is managed by a Specialist Anaesthetist/Pain Management Specialist as well as a psychiatrist. Because his pain is so bad we cannot even begin to think of any form of rehab apart from physio as he cannot cope with touch. He is now going for a sympathetic nerve block on Thursday and I am hoping that will make some difference. Like you all I imagine, I have been reading articles voraciously and I want to know if anyone has been through this lightning process therapy that happens in NZ. When your child is in pain it is impossible to stand by and do nothing. As a South African I am probably fortunate in that specialist healthcare is available to me and I do not need to wait for a referral. But I am sure as you all know I just want to get him his life back. let me know if you have any thoughts or experiences that may help us.

Hi all. Dd is under a rheumatologist, has had x rays, scan and bloods done. Had follow up appointment and the doctor has requested additional bloods to rule sjorgens out but is pretty sure dd has crps.
Her pain is not acute all of the time, so she has been referred for physio for exercises as she has been only able to walk on her toes on her left foot for weeks now, and also for support for when her mobility is bad. Her leg gives way at times and she has constant broken nights.

I know there are far worse things to have, but I feel so bad for her. She was in years after the appointment asking me why I didn't demand that the doctor do something about her pain
She is on NSAI's which do help. We are limited in what we can do so plan the days so she can rest.

Anyway, just wanted to add our experience so far. Like pp have said, if anyone wants an ear I'm happy to chat

I had no idea there were more posts after I posted back in April . So much has happened since then although not all of it positive.

Good news was that dd did manage her residential school trip although we did have to provide a wheelchair for the long walks and she was still using crutches.

In July she had 2 weeks of physio rehab at Great Ormond Street Hospital which involved either me or dh having to stay in patient accommodation with her Mon - Thurs. She had intensive physio for 3 hours a day with lots of walking in between. As a result she was able to walk without crutches.

Since then things haven't been great. Whilst she can still walk without crutches she is still in significant pain which has now spread to her arm. Her mental health has deteriorated to the extent that she started self harming a few months ago as a result of the pain. We tried to get her referred to CAMHS but she wasn't seen as a priority. We have only just got her an appointment with the school counsellor. We also have an appointment with the pain clinic at GOSH next month, something I feel convinced should have happened when she was there 6 months ago. Oh and she started secondary school in September and is having problems with her friendship group .

I am exhausted by the stress of it all. I feel so useless and helpless and am terrified that this will be it for the rest of her life. She has been left high and dry by the Rheumatology team at GOSH and if it wasn't for me kicking up a fuss she would still be no nearer to an appointment for pain management. I am so bloody pissed off with them but I need all my energy to focus on her right now. I just don't know what to do to help her.

I never realised when I started this thread that I would be posting almost a year later .

Hi there, This is my first time on Mumsnet I just found your thread and wanted to share a little of my experience with you. Your current situation is so similar to where we were with our daughter 6 months ago.
She had an infection in her toes almost 2 years ago. She was 12 almost 13 at the time. It took 6 months to get a proper diagnosis of CRPS type 2 at which point she was prescribed pregablin and amitriptyline to help with the terrible pain she was experiencing in her foot.
We have had some terrible treatments and some quite good ones including a spell at Bath centre for pain I won’t go into any more detail but what I would say is there are things that really are worth trying and /or fighting for.
We got (eventually ) a weekly appt with a psychologist attached to the paediatric pain team this was really helpful.

The crucial turning point for my daughter was that she took control of her own recovery and started to really want to get better.By then we had lived with the condition for 18 months.Nobody made her do anything she didn't want to do.Most of all the medical professionals stopped being involved and I think that helped.She and her brother worked out an exercise regime to very loud music and she just took charge and started to move her foot a tiny bit at first building up each session.It was hard for her but she had control.

Also she began to have weekly acupuncture treatments in November 2014. I can’t begin to tell you how beneficial these have been. Although costly (around £38 a time) worth every penny. So if your daughter can cope with the idea of acupuncture I can thoroughly recommend finding a registered practitioner that your daughter clicks with. The beauty of this treatment is that no needles need to be placed in the affected area. We have had amazing results over the last few weeks .She is off crutches now and making tremendous progress.

I think we still have another 6 months ahead of us before she is able to do all the things normal teenagers do! Like getting to and from school (without lifts from me). I gave up work to look after her so it has taken a huge toll on our family. She is 15 in May and I think the end is in sight. I just wanted to you know that things will get better for you and there is hope. I really do understand how desperate CRPS can make you .I hope this helps.
Good Luck with everything.

My first time on Mumsnet too. So helpful to hear everyone's experiences, so little information out there. My very healthy daughter (now 13) had sudden onset of severe abdominal pain which started at the same time as the discovery of an abdominal cyst. The pain was so severe that she was immediately unable to walk or transfer from bed to chair. She had surgery to remove the cyst but the pain remained. This was 9 months ago. The diagnosis is Central Sensitisation. She has been on gabapentin since May and the pain slowly became significantly better but she still has hyperalgesia around her abdomen and is still unable to walk due to the pain and it's legacy. We have good multidisciplinary support locally although not from a specialist pain team. We are also under a specialist paediatric pain team but they are a 2 hour journey from us. My daughter missed an entire term of school but has managed part time since Sept. The nightmare has impacted on all the family including my elderly parents. Progress towards more mobility is so slow it is barely perceivable. Even independent use of crutches seems like it's never going to happen.
I know exactly what you mean about saving your energy to help your daughter. There seems to be so many battles to fight; getting the right medical support, getting some support in school, trying to help maintain friendships, motivating for the physiotherapy .. the list goes on. Interesting to hear that your daughter took control of her own recovery - I so hope that we can turn that corner because I am physically and mentally exhausted It's really hard to keep positive as I watch the effect this has had on my daughter's life.