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Advice re pain management

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hope2heal
hope2heal

Hello,

I am new to forum. I have neuropathic pain in my feet and now part of leg. Occurred post cortisone injections pre surgery to treat ligament damage caused by an accident. Unable to have surgery now due to pain condition.

To date have tried Topiramate, lidocaine patches, pregabalin, amitriptyline, codeine, tramadol and celicoxib as anti inflammatory. Currently taking duloxetine, 60mg of codeine 4 times a day, lidocaine and celicoxib.

Was discharged by hospital pain team after a very upsetting appt where was not even asked about my symptoms and told there was nothing else that could be done. I am still relatively young and rapidly losing faith in medical profession.

Any ideas what I can do. I am still only able to work part time, cannot stand/walk for long periods and average 3-4 hours sleep at night if I am lucky-sometimes I go to work on no sleep. Any suggestions re what I can do treatment wise and anything to help manage pain at night. Not mad keen to try gabapentin as heard it can make you really drowsy which would not be great for my work. Tramadol did nothing.

Many thanks in advance for any ideas.

0 likes, 55 replies

55 Replies

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  • keith94082
    keith94082 hope2heal

    Posted

    Gabapentin is not as powerful as progablin . This could be a nerve or nerves in ur back. It's such a big area people have all different back problems. Change hospitals that's the 1st thing. Put pressure on u Doctor keep making appointments. Injections in ur back alot of people come out worse. I have the feet and lower leg thing. I have cauda equine syndrome established. I have a colostomy and a urostmoystoma they removed my bladder as well that went sepitic. I had urgent surgery as I had a major compression of the lower nerve root I was left for 6 days I would have been OK if they had done the operation within 48 hours. I won a lot of money in damages. I have mobility issues I can't feel much from waist down. Only the intense pins and needles both legs I have so many bad feeling running on pebbles with no shoes on hot and cold water. List goes on. I was told the operation was to relieve the compression. Not the pain as I have so much nerve damage my last mirror scan shows my whole spin as discs and osteoarthritis and other fluids they said it's a lost cause to operate. I will end up in a wheel chair but I keep going I have had hernia major surgery twice then colostomy revision. As the area I had was going bad. 7 major operation the scar goes right up the middle . Pain wise even with 30mg slow release twice a day.rmorpthine. progablin 600 mg. Notripiline 125 mg various sleeping pills. I have just been left. I am now under guys and St Thomas's. Their pain team are good I am going to stay at the hospital in October for 2 weeks in one of their flats I am having assessment so mentally and physiotherapy. Assessment so I pass their 1st assessment. I have been told I will qualify for neuromodulation it's a disc with batteries go in the back they disrupt the pain signal . If it works I could lose my pain even if it reduces it is will be happy. I write this not for pity I have had 8 years of this I walk with a stick. I won't give up I am 58. I was a really fit 50 year old had a good job in the mod in security. I played golf went to the gym done all the work in the house gardening decorating never left any thing my wife is disabled since 1990 I have been here care. She just got on with life. So I do now. Anyway point is don't give up keep on till u get some one to help. I was told except my situation. I won't I want to be able to do things I have been in twice for having falls 2 month's the 2nd time on my back for 6weeks then major pyhiso. Keep going 1st try as many different tablets find the cheapest0nes that help with the pain.

    • sandy77339
      sandy77339 keith94082

      Posted

      So sorry to hear your story. I am trying to stay positive. I swim and do water exercises. That's about it. Afternoon I start to get relief. Alpha lipoic acid,Heat,cream,apple cider vinegar. I tried it all. I am non medicated diabetic and still I hav

      Neuropathy. I also have spinal stenosis and bulging disc. Good luck

    • Peonygirl1
      Peonygirl1 keith94082

      Posted

      I want you to know that I somewhat know the determination it takes when you loose your old self and become a new self.  I still mourne the loss of me.   It makes me sad.  I know I have to accept the new normal and not feel quilty for impact on others! My heart is happy for the support of my family and friends. To accept the new normal is not failure it is just what it is. (It is what it is.) Keith to loose your strong, healthy self just plain stinks. I hope you will be able to make a beautiful new self full of strength and compassion. My best wishes are w you. 
    • keith94082
      keith94082 Peonygirl1

      Posted

      When I lost the feeling to wee and poo and having a colostomy and a urostmoystoma ileal conduit stoma. That was bad that how bad my nerves were damaged. They left the bladder in. Not that I could feel much from the waist to the thigh for a sexual thing. Then when the bladder went septic and they removed that and the prostrate that chanaged me. I have problems with the pain they say that why I get short tempered and depressed they are helping with that. The mobility my right leg goes died with out warning I have a few bruise even with a stick u can fall . Having pins and needles so intense the nothing their no feeling does ur head in. I was the life and soul of the party. Now I have 2 friend both were work mate at different times and I have a cousin who I am close to we met for the 1st time in 38 years last year he is a laugh. My wife is disabled but we managed thanks for ur kind words
    • Peonygirl1
      Peonygirl1 keith94082

      Posted

      Man you have been thru a war!  I can not fathom all of it. Your are a warrior of the first order! I am giving a medal to you for bravery above and beyond.   Kind of struggle is exhausting and discouraging for sure. You deserve recognition for surviving so much. I hope you get some relief in the future.  You are on the honor roll!!! 
    • MarieAzzi84
      MarieAzzi84 keith94082

      Posted

      hi Keith I have Caudia eqina too hun and also have the leg and feet pain I feel for u it's bloody awful

  • Dotty34
    Dotty34 hope2heal

    Posted

    I had the problems for years...tried all sorts of things.Now on Norotriptyline

    2 tablets at night and able to sleep 

    side effect is very dry mouth ...not making me sleepy in the day

    • keith94082
      keith94082 Dotty34

      Posted

      They do give u a dry mouth but they do work and u don't feel sleepy. Like my oxycontine 30mg twice a day has they release slowly they don't make u feel drowsy. I take 125 mg a night but for sleep I take tramzone 50 mg. Only other thing is my progablin 600mg a day. Plus my gut tablet. I do on a bad data take codeine up to 8 a day strong dose. I find I am OK if I take them at the right time I have no problems with them all.

  • Margot49
    Margot49 hope2heal

    Posted

    I have been in Gabaoentin and have developed neuropathy in my feet!  My dictir referred me to a Podiatrist who comes in the office and says I need a Neurologist which are few and far between where I live. Went to one who did nerve conduction studies and feel it is coming from my spine. She referred me to Stanford where I had a consult, more blood work ordered, looking for Myeloma and checjed my B-12, which was low bad am now taking that daily.  He also wanted their own nerve testing done. He then ordered skin biopsies, which I just had done a couple of days ago.   They gave me a leaflet listing common causes and some are scary. The biopsies are being sent to New York so I won't have any answers fir another two weeks. This has been dragging out since before Christmas!  I have read that nerves can be damaged during surgeries.  I have been trying to reduce my Gabaoentin and am down to 900 mg a day, in 3 doses.  You do adjust to it some but I still feel sluggish and have some memory issues but I also take a low dose of Xanax daily.  I suggest maybe you see a good Neurologist at a University, if possible,  

    • icecool
      icecool Margot49

      Posted

      Dear Margot I am really sorry to hear this. Please would you mind saying if you had the neuropathy before the gabapentin or did it develop afterwards? Thanks.
    • keith94082
      keith94082 Margot49

      Posted

      That's a lot I was never let to go over 600mg and progablin it is 600mg. USA let u go above the dose I live in UK and have a good London hospital helping me. I have spent a total of 2year in hospital in the last 8 years longest stay 2 months. I the same hospital I won damages from

    • Margot49
      Margot49 icecool

      Posted

      This neuropathy started after I started the Gabapentin.  Of course, the dictirs say there is no connection.  
    • icecool
      icecool Margot49

      Posted

      Margot have you tried Vit B12 injections for the neuropathy? B12 is also  supposed to be an analgesic.
    • Margot49
      Margot49 icecool

      Posted

      My B-12 has gone from the low 200's to the mid 600's on my last test. My doctor was surprised that it went up that much just on the pills so no injections now, thank goodness!

    • Margot49
      Margot49 keith94082

      Posted

      per the dictirs and from what I have read, 900 mg a day is pretty low.  I had been up to maybe 1500-1800 mg a day. They say you can go up to 3600 mg a day and have read many are on that dose. I would be a zombie.  I do not want to have to increase this again.  
    • keith94082
      keith94082 Margot49

      Posted

      Mine won't go any higher I would as the pain is unbearable when my back hurts as bad as the legs.

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