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I am going back to see my GP in 2 weeks and would appreciate some input

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Kersey
Kersey

I have had peripheral neuropathy for years and diagnosed properly for three year.  This Jan I had severe hip pain with no discernable cause.  I saw the pain clinic this week and all they suggested was a pain management course - I will go but I really dont think it will help me much.  I have been manageing my pain for years!!!  However I have made an appointment to see my GP and was thinking of asking her for access to some medication.  I have seen people talking about Pregabalin, or gabapentin and amytryptiline.  but they also talk about some horrible side effects.  Any ideas folks?

0 likes, 11 replies

11 Replies

  • rose33229
    rose33229 Kersey

    Posted

       

    Dr Oz mentioned a pain pill  Corydalis

    it is chinese poppy -  I got some

    but don't see that it helps

    neuropathy has been BAD

    have been trying all three-  about 1/2 hr or more apart

    3:00pm   neurontin

    then     1/2 vicodin    

             chinese pill

             neurontin

             1/2 vicodin

    Rose

  • duracell_dave
    duracell_dave Kersey

    Posted

    Hi kersey

    Been on gabapentin for 15 years and a very high dose for severe nerve pain in my legs,I have 2400mg gabapentin,200mg tramadol,all in all worse side affect is sleeping,a little confused, but you don't get used to them you just fit them in your life,I would 100% say side affects minimum,pain relief maximum,I could not live without gabapentin and that's no exaggeration,I owe my quality of life to gabapentin, mind you my wife says I also talk to much(another side affect lol),good luck whatever you choose kersey  I hope something works for you.

    • Kersey
      Kersey duracell_dave

      Posted

      Thank you dave.  I appreciate your honesty - the pain is foul isnt it.
    • rose33229
      rose33229 duracell_dave

      Posted

      Dave,

      what caused your neuropathy.? I think mine is from the transplant drugs.

      Rose

      kidney tx  1987

    • duracell_dave
      duracell_dave rose33229

      Posted

      Morning rose ( I just wrote all this to kersey instead of you sorry. Lol).

      my pain happened when 15 odd years ago I was a plasterer and turned in a small cupboard and here I am,my pain is massive down both legs without gabapentin I couldnt cope,I live in southern germany for 3 years now and they put 2 leads into my spinal cord and the ends in a 9 year battery in the top of my bum cheek,this causes very strong electrical pulses controlled by me and what I input to the battery,when I sit the pain is very high so the machine sends hi pulses when I get up from sitting it go's down , walk it go's to other voltage whatever I programme it,I also have a overide remote and recharge the battery wirelessly, the idea is your brain thinks of one thing at a time and the electric pulses are faster to the brain so the pain is put in the back ground, the idea is not a fix but to reduce pain and medication,I have reduced mine by 300mg gabapentin and 100mg tramadol daily,it does work not for all,you do a 7 day trial first, but it helps and as you know anything you'll try, scs by medtronic it is,it used alot here where as uk like to give you more drugs yet there are medtronic places in hospitals all over the uk.enough of my ranting,funnyly enough i find it good therepy to write like this, its good to talk lol,hope you have a nice day. smile

  • duracell_dave
    duracell_dave Kersey

    Posted

    Hi Kersey, my pain happened when 15 odd years ago I was a plasterer and turned in a small cupboard and here I am,my pain is massive down both legs without gabapentin I couldnt cope,I live in southern germany for 3 years now and they put 2 leads into my spinal cord and the ends in a 9 year battery in the top of my bum cheek,this causes very strong electrical pulses controlled by me and what I input to the battery,when I sit the pain is very high so the machine sends hi pulses when I get up from sitting it go's down , walk it go's to other voltage whatever I programme it,I also have a overide remote and recharge the battery wirelessly, the idea is your brain thinks of one thing at a time and the electric pulses are faster to the brain so the pain is put in the back ground, the idea is not a fix but to reduce pain and medication,I have reduced mine by 300mg gabapentin and 100mg tramadol daily,it does work not for all,you do a 7 day trial first, but it helps and as you know anything you'll try, scs by medtronic it is,it used alot here where as uk like to give you more drugs yet there are medtronic places in hospitals all over the uk.enough of my ranting,funnyly enough i find it good therepy to write like this, its good to talk lol,hope you have a nice day. smile
  • thomas92086
    thomas92086 Kersey

    Posted

    Kersey--

    I suggest physical therapy. I too developed hip pain. I had back surgery (L5-S1) 22 years ago, ending up with some nerve loss in my right leg. The orthopaedist set me up for a course of PT, which worked for the hip pain. You have to do the exercises. Turned out the hip was fine, but I had become quite unbalanced in how I used my legs. Both muscles and bones had changed to accommodate the loss. The result was eventual hip pain. The PT got too enthusiasic, tried to realign the bones in hip and back. She caused some peripheral neuropathy (skin) on the opposite leg. Another PT said the first was operating "outside her sphere of expertise." A chiropractor would probably have done worse. If you have had back surgery, don't go to one of those.

    To conclude, I suggest you go to a good physical therapist. If you can avoid medications, that's for the best. You have to really work at the physical therapy exercises. It might take a few weeks to change things.

    • Kersey
      Kersey thomas92086

      Posted

      Thank you thomas.  I am going to physiotherapy - I had to pay for 6 weeks private as the waiting list was so long (6 months).  I am now on NHS physio and currently they are giving me acupuncture.  I am not sure it is doing any good but will give anything a go.  I am very unbalanced and use a rollator for balance when I go out.  I went to the pain clinic but felt it was useless.  The doctor had me fill in a questionnaire and asked me a few questions, did the most perfunctory examination I have ever had.  Put up my last x ray on the computer and said it showed nothing.  Then he gave me a piece of paper with a description of a pain management course which he said he was referring me to (next course wasnt till after Xmas).  Said it would be a good idea to see a psychologist but they didnt have one at present (I felt like telling him that I had a degree in psychology and in counselling but I kept my mouth shut).  I was in the consulting room for 5 minutes.  Need I say I was not impressed.!!!  I will discuss with the GP where I go from here.  I find this forum a great help as at least I feel like people take me seriously.

       

    • thomas92086
      thomas92086 Kersey

      Posted

      I question the efficacy of acupuncture. It helps pain through the placebo effect. Well designed clinical trials show nothing else. If your physiotherapist is giving you acupuncture he or she is not addressing any potential underlying problem. Careful there. Does "physiotherapist" equate to a US "physical therapist"? It sounds different. A US PT has at least 4 years of college training. 

      It sounds as if they are trying to treat the pain, not look for a correctable cause. My PT here did a good job of diagnosing the problem as musculoskeletal. She got carried away with treatment. The MD surgeon wanted nothing to do with any case management role. 

    • Kersey
      Kersey thomas92086

      Posted

      Yes physiotherapists are trained over at least 4 years here.  I agree it is only trying to treat the pain.  I am hoping that next session she will be looking to move on to some treatment to help my mobility as I notice I have a distinct right side limp these days which i am trying to correct by trying to walk in a more balanced way on my treadmill and being aware of how I am sitting.  

      I really dont know what caused my neuropathy - it suddenly started out of the blue about 14 years ago and gradually got worse.  I think it might have been due to my carrying heavy bags of books etc on my R shoulder over years beforehand.   I probably kept it at bay for years doing Yoga and then I got arthritis initially in my R leg joints and had to stop the Yoga cause I could not kneel.  who knows!!!

      Take care.

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