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(34 Posts)
woosey35 Sat 10-Mar-18 12:01:57

My daughter has CRPS in her right leg which has twisted her leg significantly meaning her knee keeps falling out of the socket!! She’s constantly in pain. The CRPS has started to spread too sadly and is now showing signs in her right arm.

We’ve been offered gabapentin but have been told to have a really good think before we take that step. Everyone’s being vague!!

Does anyone know more about this drug and the risks in starting it??

I’ve chexked out the website ‘medicines for children’ as advised by our consultant.

Thanks in advance

CMOTDibbler Sun 11-Mar-18 17:22:07

I take pregbalin for my CRPS and it really does help (in addition to doing desensitisation etc religiously). I tried gabapentin but didn't get on with it. With both, you need to work up to a therapeutic dose, and ride out some of the side effects as you go up.

Has your DD done the Bath CRPS course?

Toddlerteaplease Sun 11-Mar-18 17:49:40

Our children's pain team uses it a lot. It's very effective for CRPS. I have taken it briefly for my MS, I loved it.

woosey35 Sun 11-Mar-18 18:19:22

Wow thank you both so much. Maybe it’s worth a trial run and see how she goes??

Yes she’s under the Bath CRPS team and is doing a 1:1 week rehab course soon. Just waiting for a date now having had the initial consultation.
CMOTD - can you tell me about your CRPS? Symptoms etc?? I’m atruggling with dd having this to be honest. She’s got other major health issues which are life threatening and now this!! It’s in her right leg and has now spread to her right arm. It’s so debilitating for her as she’s such a go-getter!!

iamme21 Sun 11-Mar-18 18:32:17

My DS was put on this for a similar issue. Ended up being bluelighted to hospital unresponsive having reacted to it. Fine within a few hours but scary. Obviously he didn't continue on it, and having heard some horror stories about withdrawal from it, I'm glad

CMOTDibbler Sun 11-Mar-18 19:29:59

It's great she has a place on the Bath course - it's not easy, or a quick fix, but the only way with CRPS is to retrain your brain so you have to keep working at it every day.

I developed CRPS after a massive injury to my arm which involved nerve damage. I have hypersensitivity, a burning pain (my normal is like the feeling of a fairly bad sunburn), swelling, and skin/nail/sweat/bone density changes. I can't use that arm due to the injury anyway - it's been 7 years.

I was incredibly lucky in that the physio within 3 weeks of the injury knew a lot about CRPS so she started work with me then

woosey35 Sun 11-Mar-18 20:25:20

Iamme - crikey what a worry. Poor boy. And you. My daughter has anaphylaxis to such a lot of things that her allergy consultant thinks she shouldn’t take it!! However her other consultant (endocrine) thinks she should!! We are stuck in the middle just being handed leaflets to help us decide!!

CMOTD- your symptoms sound similar to dd. Her right leg goes purple of grey, hairy and her toe nails change shape. She says it feels like toothache constantly but then she describes random fireworks going off inside her leg. Sometimes she can’t tolerate clothes touching it and screams if anything brushes it, other times she can manage that but says it feels like dough when touched. It’s ao odd!! We don’t know what triggered it although remember her when she was about 2 having constant pins and needles in it. She’s 9 now. It’s just got worse over the years. She had periods of remission for a few months at a time but those remissive stages have gor shorter. The knee socket is now so distorted she may need surgery.

It’s so horrid watching her in so much pain but having no way of helping her. Her other conditions impact on it all too.

CMOTDibbler Mon 12-Mar-18 10:19:36

With the twisting, have they discussed the possibility of dystonia? I had it as well , and a few sessions of botox stopped the muscle contracting and somehow switched off the over active nerves. Dystonia is very common in CRPS

CMOTDibbler Mon 12-Mar-18 10:20:08

BTW, medical botox, administered by a neurologist!

woosey35 Mon 12-Mar-18 12:49:53

CMOTD- yes last year she was diagnosed with ‘fixed dystonia’ looked like a wooden leg!! Now it buckles in sideways, the muscles and ligaments are getting looser and looser and the knee joint itself is very unstable!!

shewolfmum Tue 13-Mar-18 23:14:11

Woosey how horrid it must be awful to watch your daughter in pain. How old is she? I wouldn't touch that drug. The common side effects are quite horrific and if she is sensitive it, for me , would be too much of a risk. Here is the patient info leaflet.

woosey35 Wed 14-Mar-18 07:34:14

Thanks so much, I will read that now. She is 9

Sparklerainbow1 Thu 15-Mar-18 20:18:31

My son takes gaba, it works, too much makes him a bit spaced out but if we adjust it he does just fine and it works. He has CRPS and erythromelalgia, as well as other things

2old2beamum Thu 15-Mar-18 21:51:07

Son has taken Amitriptyline since he was 8 for neuropathic pain, it has been a lifesaver for him. Takes 25mgs X 2/day. Did zonk him out to begin with.

woosey35 Thu 15-Mar-18 22:16:15

Omg thanks so much!!

Sparkle - can you tell me about your sons CRPS?? What are his symptoms and how did it start?? I’ve never met a parent of a child with it...

2old - I was think amitryptaline..have there been any side effects?? Is it kinder than gaba??

CotswoldStrife Thu 15-Mar-18 22:22:36

I have taken both amitriptyline and gabapentin for nerve pain as an adult. I found that the gabapentin worked better but there were side effects to both - amitriptyline made me so drowsy I had to take it early in the evening or the next day was wiped out and the gabapentin also makes me drowsy!

Lichtie Thu 15-Mar-18 22:24:57

I take gabapentin for nerve damage in my back, was recommended by my physio. It works for the pain, but to keep working they kept upping the dosage which scared me a bit so I came off it.
The withdrawal was quite bad, night sweats, headaches etc but didn't last too long

2old2beamum Fri 16-Mar-18 11:00:11

Hi woosey it was brilliant after about a week the screaming subsided, however it did make him very sleepy but as he is deafblind he is prone to nodding off if he is bored with life. Also he has never had a poor sleep pattern but this is preferable to screaming with pain.
We were told if Amitriptyline did not work we could try Gabapentin.

Sparklerainbow1 Fri 16-Mar-18 19:41:31

He was prescribed gaba originally for his erythromelalgia which mainly affects his feet. The gaba helps keep the associated pain under control most of the time. His CRPS is a bit weird, perhaps it always is?! He has had bouts caused by joints subluxing, dislocating, banging an arm or even after a standard innoculation . His limb inflames, the skin is tight and purple, moment is massively restricted, it is very painful. Gradually reduced over a couple of weeks usually, although it has taken longer. Does that sound familiar?

Sparklerainbow1 Fri 16-Mar-18 19:43:37

I have to check the dosage but my ds' maximum dose is 3x 3 x a day, so 9. This does make him woozy and even saw rhinos in the field rather than sheep one day!

rocketgirl22 Fri 16-Mar-18 20:16:02

I have CRPS as well after a fracture.

It is incredibly hard to fix according to my consultant, but keep going and hopefully things will improve.

I had initially truly agonising pain, and it was easily hitting the most I could bear, burning (as in on fire) feeling, v. painful shooting pains, severe swelling and odd thickness of nail. Feelings of revulsion towards that area. Hyper sensitivity. I nearly passed out having a scan, and even the smallest breeze is agony. It has been really hard to deal with and I have had my fair share of major operations and two children without pain relief.

After lots of physio and 8 weeks later I now have:

less swelling, hypersensitivity is easing, burning pain has gone but still finding it hard to move the limb.

I have been using fabrics, fur, everything to desensitise the area this has helped the extreme end of the condition. I have 'love bombed' and told myself over and over how much that part of me is loved and part of me. Sounds strange but seems to be working a little. I am stroking, massaging and moving it constantly. I am trying to use it normally (it still feels completely broken but it isn't)

I have a referral to the bath clinic and go on the 21st. Not sure what to expect....

Gaba was horrendous. I could not tolerate it, I was supposed to take 9 a day, and even 2 made me feel so spaced out, like a zombie, I felt sick and could not focus in a tiny bit. I can't recommend it at all.

I have since been given amitriptyline but have had a stomach bug so I am yet to try it. I am dreading taking it when I am better.

I am so sorry your child has this, it is so awful. I have had so many huge health problems and this has been the worst by far.

Sending you both flowers and prayers for a quick recovery.

rocketgirl22 Fri 16-Mar-18 20:21:43

Can I also reassure you that my friend's son has this, he is 12, and went to the bath clinic - they have worked wonders and he is now walking and functioning much more normally. Not perfect, but so much better.

My friend was at her wits end, it is getting better, slowly - so slowly but progress.

Wishing you both the best.

rocketgirl22 Fri 16-Mar-18 20:23:15

I had a long appointment with the CRPS specialist. It is still a mystery which is why you will struggle to find very much information. This alone makes you feel more worried, and isolated.

rocketgirl22 Fri 16-Mar-18 20:23:50

I had a long appointment with the CRPS specialist. It is still a mystery medicallywhich is why you will struggle to find very much information. This alone makes you feel more worried, and isolated.

IvorHughJarrs Fri 16-Mar-18 20:27:19

Does this help at all?

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