Bcm2014

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I have suffered for neuropathic pain for 25 years i have been on amitriptyline for the same time also use venlafaxine and others through the years I have good days and bad. Can I ask please if any of the forum has experienced burning prickling very itchy skin all over and feel like you have a wee towel wrapped around your stomach ?

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  • Posted

    Hi there,

    Sorry to hear you are suffering. I have had neuroathic pain for some time. Like you good days and bad. I experience, burning. It's like hot pins and needles, but mainly in hands and feet. It then goes to my head eyes ears etc it's horrendous. Amitriptyline is the only thing that controls it. But I have flare ups and the last two days have been very bad. It's quite isolating too. So it's good to talk on here as there are people going through the same or similar.

    • Posted

      Between 1975 and 1990 I had three laminectomies (operations on my spine) and various other invasive procedures. All this has left me quite a lot of nerve damage and consequently neuropathic pain.

      Over the years I have always been in some pain but apart from a couple of major flare ups I have been able to lead a relatively ‘normal’ life.  That is until January this year.  My doctor prescribed Nortriptyline and as this gave me terrible acid so  he also prescribed Omeprazole.

      The main symptoms I have, apart from pain, is the horrible burning in my feet and legs. It is worse when I have overdone things.

      Just over 3 weeks ago I started to feel better and started to do some exercises. very foolishly using 500g weights whilst trying to slide my arm down one leg and raise the other arm up straight (if you can picture from description what I mean!) Honestly, at 71 you would think I had better sense!!  I am still in pain but it is improving.

      I was also diagnosed with Polymyalgia Rheumatica in May this year.  This is another painful condition that has to be treated with long term steroids. It is quite hard to work out which pain is what.

      On a cheerful note, my nephew is bringing his 4 day old son for his first visit tomorrow.  I can’t wait.

      What is responsible for your symptoms?

    • Posted

      I have idiopathic neuropathy. After all batteries of tests, I have no known reason. I suffer daily for 20 years. I take pain meds to relieve my condition in the feet, legs and hands.  I’m able to walk but hope I can continue. Just a note for others. Peace 
    • Posted

      Hi Claire

      Yes suffering from neuropathic pain it's the most difficult pain to deal with,I became very depressed with the constant burning and prickling starting in my face then it starting to effect other parts of my body, it took five years before I was diagnosed and prescribed amitriptyline but through the years your body gets used to it so it does not work as good that's why we get breakthrough pain, I know how you feel when the pain is bad and how emotional you feel with it no one can really understand what it's like unless they are living with it and having to accept there is no cure yet for it

    • Posted

      Yeah, you really have to fight to get a diagnosis. I have had nerve conduction tests and things but I think it's very hard to pin point where the pain stems from. Anyway yes I suppose the reason could be that your body gets used to amitriptyline. In the main it helps me function. I just thought it was flare ups. I'm on quite a low dose and it never completely goes, but it's low enough to manage. Tried other meds but the side effects were terrible. Most of the people I speak to on here are from America. I'm from uk

    • Posted

      Hi Clare

      Am from the UK too, I take a high dose of amitriptyline maybe you need to ask your doctor to increase your dosage, It would probably ease the pain for a while because it's still poorly understood just what is causing it, mines started when I had dental treatment it escalated from there

  • Posted

    I have suffered by this condition for 20 years(neuropathy). I have all of the same except I don’t have the itchy skin that you describe. Are you sure you don’t have shingles?  This is what it sounds like to me. 

    I take lyrica and high dose of gabapatin to relieve my pain and tightness of legs. 

    • Posted

      You take Lyrica and Gabapentin.  I take 300mg Lyrica a day but I am still in pain. I was going to ask my GP to increase the dose but maybe adding in Gabapentin would be better.

      Do they make you very tired?

    • Posted

      Hi Peter

      No the itch is all over my body the same place I get the prickling and burning can be a total nightmare to live with, after 25 years I very much doubt it can be cured but learning to manage it with medication can help but it's learning ways off coping when the pain breaks through the treatment, the neuropathic pain just keeps coming back, I feel it makes you a different person from what you would have been without this pain

  • Posted

    Well that's something to look forward to and at 71, amazing to still be able to even try doing that. I had a car crash in 2003. Compound fracture of my knee and collarbone, facial injuries etc. So alot of nerve damage. Seen neurologists but they can't pinpoint it. They gave me a diagnosis of chronic pain syndrome but I don't agree. Lots of people have pain from injuries that last for a long time but it's not that.

    • Posted

      Sorry think I replied to the wrong person. Sorry
    • Posted

      Chronic Pain Syndrome! They call mine Failed Back Surgery Syndrome! I ask you!!

      I suppose it's just another way of saying "We don't have a clue"

      I hope you have some effective pain relief.

    • Posted

      Yeah kate it feels that way. Very isolating. Like it's in my head. Total dismiss the fact that my nerves were crushed. Just have to accept it any enjoy the good days

  • Posted

    I was diagnosed with Spino cerebellar ataxia( a form of motor neuron disease) in 2009 and shortly there after started to experience a burning pain(like sunburn) around my torso. Initially it was just a shallow pain and I was prescribed Lyrica and tripolene. It helped for a while but gradually got worse and has spread to my arms, face, and legs and my feet burn at night. I have increased the dosage but it does not help anymore. I have tried cannabis oil, outback pain balm but nothing seems to help.  I am now looking into meds that is similar to lyrica, as I have been told that my body has become accustomed to Lyrica. The cycle of pain is now the same every day, in the morning when wake up the burn is an intense cold feeling and turns to a warm burn on the torso and icy feeling on my  face, hands and feet. I have tried acupuncture and chiro practise but nopthing seems to help!

    The worst is the side effects of Lyrica(suicidal tendencies, crying, dizziness, forgetting words, clumsinesss effecting eyesight etc etc.)

    DOES ANY ONE H

    AVE A REMEDY???????????????

    • Posted

      You poor thing.  I can't think of anything you haven't already tried except Gababentin, it might be spelt with a p rather than a b I can't remember.  This is what they used to prescribe before Lyrica and I found it effective when I had a flair of my condition around 15 years ago. I had to start on a low dose and work up but once I got on the high dose it was effective for pain. 

      I hope you sort something out.  A condition like this is so isolating.

      Kate x 

    • Posted

      Hi Kate,

      Thanks for the advice and I will look into this and keep you posted!

    • Posted

      I feel for Andre, and I have severe. Burning , stinging  pain near my stoma. I have tried all of the mess they use for nerve pain, cod ool, nerve ablation, nerve blocks, spinal cord stimulator and none worked. Just keep on asking people., different websites, forums, etc and you may get an answer.  I am still liking and hoping I, and you, can find something.    Take care
    • Posted

      Hi Andre

      Believe me I know how you are feeling, it's a total nightmare to live with, medication is good for a while but as you said your body gets used to it so it does not work as good that's why we get breakthrough pain now, if only they could find a cure but they say it's still poorly understood how to treat it so the medication just masks it but it never goes away completely, we need a miracle for that one

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