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living with neuropatic pains

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smileI started experiencing neuropathic pains three years ago. ( I had for several years had strange feelings on /under my feet . Feeling of tightness as if encassed in some iron boot I guess. The real pains started Three years ago, immedately after a hip replacement operation. I had developed a bad gait ( sort of twisted)and I presume that as I began to walk straight once more my spine started to readjust and due to wear of the vertebreas and thin disks( I am 77 years young) pressure was put on the nerves( I also suffer from chronic lumbago) and burning, singing and cuting pains started all over my body. I was first prescribed a variety of painkillers which were not of great use. I then saw a consultant neurologist in Liverpool ( I live in the Isle of Man) After a thourough examination and the result of a scan, he suggested pregabalin and amiriptyline , gradually increasing the dosage over a period of several weeks and I have been following this therapy with a degree of success. I still suffer a certain amount of pain, especially towards evening. Usually a sudden cutting pain where there is contact with the skin. I readjust my garments and massage the erea. So I wear loose garments. I find that sitting too long aggravates the condition so I keep myself busy with various activities. I cycle weather permitting ,all the year round ( I never suffer back pains whilst cycling ) I get involved in various music activities. Throughout my worst moments I have always found music, listening or participating ( I play the recorder in groups and sing in sevderal choirs), a great comfort and aid to pain management. Focussing the mind on pleasant and beautiful things is for me a great help and comfort. I am not very religious though I attend church, in the choir. Meditation also helps.

I don't know if any of my experience can be of any help to others but I hope so.

Suzanne Rose RamseyIsle of Man

2 likes, 6 replies

6 Replies

  • scaffman
    scaffman

    Posted

    hi suzanne rose i hope you are keeping well you will have been to the walton neuro centre in fazakerley to which i attend on a regular basis iam 48yrs (young) my name is pete. i had a accident at work when scaffolding rolled onto my leg and crushed it .i was looked after by orthapedics in fazakerleyhospital.it was touch and go whether my leg would be amputated or not, they saved my leg but i wish they hadnt. i have had two years of hell with this leg i attended the a+e that much i was on first name terms with the staff.my pain started 6months after the accident they where like stabbing pains, electric shock pains,burning in the foot.the consultant gave me gabapentin to which this did nothing he couldsee i was distressed,he then refurred me to the walton centre for neuroligy. i saw a few different doctors so the drugs they gave me where lamotrigine,gabapentin,oxecontin, amitriptolene these drugs are very powerful and yet i dont get much relief. at the end of a very long line of different stages they have put an inplant in my body. this is called a spinel cord stimulator,i had this putin in feb 07 the first op failed due to machine failure so i had a second op 3days later but it is working in the wrong area. my next op is 11/9/07 so i hope this works. this takes me to 5 operations in all. all this has taken a toll on my wife and daughter but we are a very strong family. i do have loads more to talk about so if their is anybody out their who wishes to reply i would be more than happy to reply back smile
    • lynne57052
      lynne57052 scaffman

      Posted

      Hi my name is Lynne and I am 63. I have a left Brachial Plexus Injury and have gone through all the drugs suggested by the pain clinics. I have not found one that helps the pain or doesn't make me feel drowsy , so for 13 years I have used diversion therapy ( thinking happy thoughts !) but it's tiring and ver debilitating. Now the pain has worsened due to cervical spondylosis and it's been suggested that I consider a spinal cord stimulator .. So scaffman, has it worked for you ? I did a lot of research myself and wasn't pleased with the comments of the folk who had had it done. Plus they only offer a 50% reduction in pain and it seems a lot to go through for that. 

      I would appreciate your thoughts, many thanks. 

       

    • scaffman
      scaffman lynne57052

      Posted

      Hi Lynne so sorry to hear about the pain you are suffering it does help me a lot i have had it in for several years now without any problems and i test it every few months by turning it off and see what happens with my pain levels and after 3hours i need to turn it back on and within an hour my nerve endings have settled down so it does work for me i do have an excellent surgeon and pain management team who take great care of me but as you have said they only offer a 50% reduction in pain but dont you think that is worth it less pain                                                                                                                                                                                                                                                                                                                                                                                                           
    • scaffman
      scaffman lynne57052

      Posted

      Sorry lynne my computer crashed before i could finish what i was writing.As i was saying dont you think it worth while going through the op and hopefully being in less pain?.Regarding reading comments about the stimmulator were their any good ones? as everyone is different whats good for one person may not be for another.You also do not go for the operation right away has anyone mentioned a "Trial period" this is were you are taken to the Theatre and under local anesthesic contact leads are put on the nerves that control the part of your body that is causing the pain.they then connect it to an external box that you control were you can turn the pulses up or down you normally have that on for ten days then it is taken out of you which is done very quickly they then talk to you to see if you got any relief from the pain  if you did they may then put you on the list for one it is a little smaller  than a digestive biscuit thats the battery which is placed just under the skin and the leads are put deeper.Problems can happen leads coming away the pulses it sends out might not be in the postion you want them to be but they willl never do the implantation of the stimmulator until they are satisfyed that the Trial one works.I hope this helps you lynne if you want to ask me anything else please contact me and i will reply quickly to you.All the best Pete
  • ping58196
    ping58196

    Posted

    Hi, Suzanne, it is great to read your very positive experience about using Pregabalin and Amitriptyline. smile

    I have been suffering from tongue and lip pain for one and a half year now and have been prescribed the same medication previously by a Neurologist. He considered that my nerve was over sensitive. Having read the side effects of the Pregablin on web, I hesitate to take them. neutral

    Are you still on those two medicine (I know it's been 7 years since you posted your story on the forum)? Would you kind enough to share with me whether you experienced any side effects? Thank you for your help.

    Dear other friends in the Forum, please do share your experience with Pregabalin and Amitriptyline if you can. Thanks the same. surprised

    • lynne57052
      lynne57052 ping58196

      Posted

      Hi, I too was heartened to read Suzanne's positive attitude to her condition. It's not easy is it ? I have just been trying 50mg Pregabalin again after 13 years. I didn't like them the first time and certainly don't like the way they knock me out. I can only assume that Susanne has a smaller dose or her system has adjusted to them over time. I will follow with interest if she manages to reply. Your condition must be difficult for you, I hope you get some relief from the meds. Regards , Lynne. 
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