Neuropathic Pain

ouchpotato
ouchpotato Member Posts: 453
edited 24. Mar 2014, 16:28 in Living with Arthritis archive
Hi everyone

I've been absent for a little while as I lost my internet access; I haven't been feeling good either so it's probably best I stayed away as I wouldn't have been the best company!

So I'm getting to grips with the OA, and in a bid to sort myself out I am trying to deal with and understand one part of it at a time. (Just as a reminder I have OA in spine L4/L5 and L5/S1, facet joint arthritis, ruptured disc and spinal stenosis, and OA in knees, hands, wrists and shoulders and also I suspect in hips).

Anyway, I am trying to cope with what the Dr says is neuropathic pain in my thigh. It starts in my groin, and then spreads down the front of my thigh to my knee. It is the pain I find most difficult to deal with as it makes me want to throw up. I spent all of last Sunday stuck on the settee, literally rooted to the spot with pain. It's a deep, burning, sickening pain, very difficult to describe.

So my question is, if anyone else has neuropathic pain, what works for you? I am on amitriptyline 10mg for it, but it's not really helping. It's made sleeping a bit easier but the pain still comes. I am also on citalopram for separate issues, hence the low dose of amitriptyline. Cocodamol don't really touch it.

Thanks in advance.

Forgot to say that I am going to the pain clinic in may for (possibly) spinal injections...so would appreciate any feedback on those too.

Comments

  • sheenakt
    sheenakt Member Posts: 51
    edited 30. Nov -1, 00:00
    Hi,

    I too suffer from nerve pain, it's terrible, painkillers do not help as they are for pain messages to the nerve not for when its coming from the nerve itself. I've had numerous injections, THR, rhizolosis, nothing lasts for very long. I do work part time, although I am on sick leave as I've been diagnosed with Fibromyalgia and Costochondritis, I've never claimed any sort of benefits but do have a blue badge. I've never had any advice as to whether I'd be eligible, noticed that several people on this forum do.

    good luck to you, x
  • sheenakt
    sheenakt Member Posts: 51
    edited 30. Nov -1, 00:00
    meant to add I also take Amitriptyline, Gabapentin is often used also. I've found the injections help for around 3 months for me, I had mine done privately but they won't fund anymore of them, x
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Sheenakt, is yours in your thigh? I always thought that nerve pain would be sharp, like sciatica, but this is completely the opposite, hot, dull and sickening. Sorry to hear you are suffering with it, it's horrible.
  • frogmella
    frogmella Member Posts: 1,115
    edited 30. Nov -1, 00:00
    Nerve pain comes in many forms. When my back first went it was often like icy fire down my leg. But other times it was like a migraine in my leg or like my leg wanted to be sick. Hard to describe really. However, I was on amitriptyline for a bit but went up to 20mg a day. It did help but totally wiped me out. I switched to gabapentin and gradually worked up the dose to to 600mg three times a day. It worked really well. But it does make you a bit stupid. Be careful if you do switch. My GP told me that because I was swapping I wouldn't need to come off the ami slowly. Big mistake - awful withdrawal side effects of head ache etc.

    Have you been referred to a surgeon? Maybe the pain clinic will refer you after the injections. I ended up getting fused and it removes the pain entirely. I had injections first and they worked really well but are short-lived!
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi ouch

    My sympathies to you, I have been living with Neuropathic pain for ten years and it 'aint a barrel of laughs. I can relate to the type of pain you are experiencing I get burning throbbing pain in extremities and electrical type shooting pains all over my body. Unfortunately none of the neuropathic drugs did anything for me so now get infusions of IVIg every three weeks it is the only thing that helps my very rare condition.

    If the Amitriptyline is not touching the pain you may need to try Gabapentin that is usually the next drug that they will try after that it would be gabapentin if my memory serves me rightly. I am pleased to see that at least the Amitriptyline is helping you to sleep. Hopefully once they sort out your OA that will cure your neuropathy problem.............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi ouch;

    I take gabapentin for neuropathic pain. It doesn't work like other painkillers but it does help somewhat. I still don't know what causes mine but it's difficult to deal with. The side-effects at first were not very nice but I got used to it and now I don't notice any at all. I've been taking it for about three years.
    xxAnna
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Thanks for the replies. Anna, what were the side effects of the gabapentin? I've heard write a few horror stories and am a bit worried about it as I'm a single Mum and have no one around to help me if the side effects were bad.

    I'm on my phone and it won't let me scroll back to everyone else's posts, so don't think I am ignoring anyone!

    I've not been referred to a surgeon as yet. The rheumatologist who diagnosed me recommended pain jabs first before surgery is considered. Again surgery would be a problem in terms of me having no support.

    Its funny, someone mentioned ice fire I think? Well last weekend when it was really bad my leg was on fire but felt freezing cold at the same time! It was very weird.

    I'll reply better when I get my laptop on.

    ,
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Yes, you can get some very weird mixed up, painful signals. I've had very hot water poured over my hand that felt ice cold and other very troublesome nerve symptoms.

    The side-effects for me were not ones listed for Gabapentin. I got very hyper when it was supposed to make me sleepy. I think the sleepiness is the most common side-effect. I had felt very hyper, had insomnia and when I closed my eyes I had weird, colorful geometric shapes appear. It was pretty unsettling but I persisted with the drug because I was quite desperately painful. The disturbing side-effects went away in a week or two. Now I really feel the drug was a godsend as it settled down many of the painful, distressing nerve symptoms I was having.

    Best wishes,
    Anna
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
    Hi,

    Hubby had extremely high doses of gabapentin for nerve end damage & then pregabalin wen gab' stopped helping, unfortunately he's now at the end of pregabalin helping too :(
    I've had both for fibromyalgia pain. Gabapentin did nothing but pregabalin worked well, the 3 1/2st weight gain was enough to make me come off of it tho ... I'll cope with Tramadol SR thanks, I can't afford more weight gain as I'm like a big barrel already :cry:

    Not everyone has the side effects tho & they really can help!! Good luck, messed up brain signals really are the pits (((hugs)))

    Xx xX
    Healing Hugs
    Debbie.x
  • 19smp59
    19smp59 Member Posts: 105
    edited 30. Nov -1, 00:00
    I take Amitriptyline for neuropathic pain and it works quite well. Have you talked with your GP about upping the dose? A few years ago when I attended a pain clinic I was prescribed Pregabalin and I remember the consultant telling me that he thought it was the best drug for this kind of pain. I have stuck with the Amitriptyline because it helps me sleep. He also told me that Pregabalin was a very safe drug with few side-effects, so it may be worth looking at. As a side note, Pregabalin is much more expensive than Gabapentin, hence a lot of GPs will prefer to prescribe the cheaper option!
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    19...I am only on a low dose of amitriptyline because I am also on citalopram, another anti depressant prescribed for me years ago when I was going through domestic violence and was suffering from anxiety. As the situation is ongoing (we escaped and kept moving around to avoid him, but his solicitor tracked us down - the police here told her that she was not to disclose our address to him but the anxiety that she will is ever present) I do not want to come off the citalopram.

    Debbie, 3 and and a half stone gain??? :o I can't afford that! I am always trying to lose weight! Ironically when I do lose weight the pain gets worse...go figure!

    Anna...yes I have heard about the 'seeing things' side of it. People have hallucinated on it so I've heard. I'm not so keen on that either! Are you still on it now? I'm a bad sleeper, and the amitriptyline helps with that, so being hyper and not being able to sleep would be awful.

    I have a GP apt on Wed so will speak to him about it then. God, I have an ever growing list of meds!
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    I wouldn't be afraid of the side-effects, you can always stop the drug. If you don't try it you won't know if it will help. And, everyone reacts to these things differently.

    Yes, I still take gabapentin three years on. I tried lowering the dose last Oct when I was doing better and I had major symptoms return. No more tinkering with dosages, even with doc's permission.