Peripheral neuropathy - neuropathic pain - anyone any experience of this?

Hi everyone,

Not really asthma related - well, only indirectly - but I thought I would just ask whether anyone else on here has experience of this as part of another medical condition.

During my recent prolonged ICU stay (in Feb - March) I developed Critical Care Myopathy and Neuropathy - basically muscle wasting and nerve damage due to a combination of the drugs they had to give me, the sepsis, kidney failure etc etc and the fact that I was lying around not moving for seven weeks (I know - lazy aren't I?!)

I've got numbness and neuropathic pain in my feet which is really a little unpleasant, especially at night, as it wakes me up and I can't get back to sleep. My feet are very sensitive to quite light touch, which makes things like having them washed and dried quite uncomfortable (don't worry, I am still washing my feet though!). I've also got impaired proprioception (joint position sense) in my feet, which basically means that unless I'm looking at them I don't know quite where they are, so I keep stubbing my toes on things, which is not really helping the pain situation!

I've been seen by the Pain Clinic and have been started on various different things, including some drugs that act specifically on the nerves (amitriptyline and gabapentin), and have been given a TENS machine today, which seems to be helping a bit. Of course there's the usual problems with the various drugs interacting, which most of you will be all too familiar with! I had some seizures when I was an in-patient, which may have been partly due to the combination of amitriptyline and tramadol, and I also seem to be very prone to postural hypotension at the moment. I'm also waiting for a course of acupuncture, and a trial of a lignocaine infusion (apparently also a bit of a bronchodilator!) but both of these have waiting lists in the order of months.

What I basically was wondering, was: does anybody have any bright ideas or top tips for dealing with acute flare-ups of the pain and 'electric shock' sensations, particularly at night? The drugs seem to have reduced the chronic element of the day-to-day pain, but they haven't eliminated the acute episodes. I've been advised not to wear the TENS machine at night. People have suggested various things to me, like putting my feet in a warm foot bath, or getting someone to massage my feet, but neither of these are particularly practical for 3am when I just want to get back to sleep!

Any bright ideas anyone? Sorry this post is so long and moany... thought it was worth a try asking you guys though, cos I know many of you have medical problems other than the asthma. In particular, has anyone tried acupuncture for neuropathic pain? If I thought it had a good chance of working I might try to get some privately rather than waiting months to have it through the Pain Clinic.

Cheers everyone who's managed to read this far!

Take care all

Em H

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Hiya,

My mum has trigeminal neuralgia. Amitripoline, you're on; ok for chronic nerve pain as a muscle relaxant. Beware making acid reflux worse or creating hernias as it did with mum! Nortriptolene in small doses may work instead - mum's switched to that now & she finds it better. Electric shock type pain - could try it's called carbemazepam or something (it's similar to epilepsy drug?) worked well for her. Similar pain, different location and cause? I'm sure you'll be more clued up on it than me. Sorry if I've spelt the drug names wrong. Hard Indian type Massage and deep tissue massage helps - increasing blood flow helps. So does accupunture, but stay clear of chinese herbs as you don't want multiple interactions. She didn't get on with Tens at all; just wanted to fling it across the bed, especially at 3am. Nerve pain is so horrible & debilitating. I wish you well in regaining some normality of sensation! Take care & best wishes.

Sheep.

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Sorry have no experience of this just wanted to say great to see a post from you!!

Tks xxx

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Em! So good to see you back online.

I don't think I have much to add - my experiences with patients is that gabapentin and carbamazepine work well, but it's a case of titrating dose up until you get less and less of the acute episodes.

Good luck, hope you find something that works.

Cathy

x

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Emily I thought I would just add that my mother suffers from a pain disorder were her brain sends the wrong messages to her hands and abdomen after having two operations (a hysterectomy for cancer and one on the tendons in her hands to straighten the fingers) since these two operations she was diagnosed with the pain disorder (I actually have no idea the name!!) her pain is all full and cannot feel her fingers. She was referred to a pain clinic and started on gabapentin which had some effect up too 200mg three times a day then the side effects got to much above 200.. She also has acupuncture and injections into her neck the injections have worked very well and after three injections she is getting less pain the combination of all three has worked very well. for the first time she has a lot less pain and is happier. I would be careful with the injections as her first one she suffered breathlessness’ but on subsequent treatment she has been fine.they do monitor you very carefully during the injection. For her hands my mum used to have a warm wheat bag wrap or hot water bottle as the heat helped the pain some what. She also has splints so not to move them too much during the night this was hard to get used to, but it did help also. The Physiotherapist was the best for help with pain devices, whom she sees at the pain clinic. I realise this must be very distressing as I have seen my mum go through so much in relation to her pain and hope this has helped somewhat. Have you thought about (I understand this may sound crazy) one of those cradles that keeps the sheets of your feet. All the best Emily Don't be discouraged. “It's often the last key in the bunch that opens the lock.”

Jaycie

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Hello Em, i have diabetic neuropathy and have tried many a thing, ok amitryp good i have 25mgs at night but takes a while to kick in so dont give it up too soon, gabapentin and pregabilin are good but can and did with me cause breathlessness, pulmonary odeama and increase in asthma symptoms so beware. Tens are fab but like you say you cant use at night. Right dont think im mad!!! all right i know i am and i thought this was too when diabetic doc told me but for foot neuropathy put a tegaderm dressing on the top of your foot?? mad yep but you will be amazed if like me it works for!!

Pain wish i now have to rely on MST and oramorph if your breathing can take is very affective.

Love and prayers

Andrea xxx

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Hi there em, good to see you back online. Been on hols for a few days so not up to speed on the site yet. We often use ketamine (oral or subcut - you can give the iv preparation orally, tastes foul though) for acute neuropathic pain. Might be worth asking about if you are having a lot of problems. Amitriptyline works quicker than gabapentin. Other things like heat pads are sometimes useful, as can capsaicin cream be. Will let you know if I come up with any other ideas once the palliative medicine bit of my brain is switched back on after my hols!

Sarah

[Moose1]

hi Emily,

I know exactly how you feel and it's horrible! I have phantom limb pain and neuropathic pain. As many have already mentioned, i too take Amitripyline (just gone up to 50mg a day) and Gabapentin which i currently take 1200mg a day of, also use a walking stick and have crutchers available if need be. Unfortunately though, over the past few years I am yet to find anything to stop the sudden bolts of electricity down the nerve, other than swearing, pulling a funny face and saying 'OW!' very loud. One thing i do, and this will sound odd, is to actually stand on the affected foot. For some reason, applying a lot of pressure appears to help in the short term. I recently read that it has been found that TEN's machines do not help with some types of neuropathic pain. The lidocain infusion that u mentioned sounds quite interesting. I haven't seen anyone at a pain clinic, still being treated by GP, at least a 3 mth waiting list for pain clinic anyway.

Sorry i've not bee much help but good to see you back!

Christine

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My Mum suffers from alot of neuropathic pain for different reasons and she swears by amitryptaline and pregabalin(sp?) but despite being on high doses of both does get some sharp pains too but they are bearable as not too frequent (1 or 2 a day)

I take gabapentin and tramadol for pain caused by nerve involvement in some adhesions i have developed post appendectomy / hip pain due to osteonecrosis and it has helped quite a bit but not totally but reached a limit when side effects were worse than pain.

I hope you can get it sorted soon take care

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I have a friend with CP (cerebal palsy not chronic pain although one has lead to the other) who was referred through the pain clinic for hydrotherapy and it's become her lifeline as it's the only thing that lowers her pain levels despite max drugs and really helps with her muscles. Worth asking them about although in my area they only fund either hydro or acupuncture so you have to choose.

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Support society

Hi

My Dad suffers from very bad neuropathic pain due to diabetes and has loads of support from a special support group specifically for it. Neuropathic pain is a well known problem with diabetes and is notorious to treat. Can't remember exactly whatthe society is called, but you could try using a search engine. I'll give him a ring later today and will post the name later. ( If this is allowed, I'm new to all this and still finding out all the rules!)

You will probably have to join but I know he gets a brilliant magazine with loads of articles on self help and info on the latest techniques. Might be worth a go to get help from people in the same situation.

Take care and hope you find some relief

rabbit

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Thank you very much everyone who has replied to this.

Things are a little better - the gabapentin seems to be kicking in a bit even though I can only tolerate up to 300mg tds. I've tried the capsaicin cream and it didn't seem to be having any effect at all... couldn't even feel any burning until I accidently put some on some of the 'normal' skin further up my leg where the nerves aren't as damaged... oh boy did it burn then!

Ketamine.... I had wondered about that, Sarah, I seem to remember it being used on patients with some success when I was doing Palliative Care. I'm really cautious of it because I've been given it as a sedative/bronchodilator on one occasion when I was ventilated about eight years ago, and it made me... well, psychotic, not to put too fine a point on it! I would guess, though, that the doses used in chronic pain are a lot lower than the sedative dose, so we'll see!

I'm sure I'll find something that works for me and doesn't make my other problems worse... it just takes time, doesn't it!

Thanks again everyone

Em H