Severe nerve pain in thighs, surgery and nerve block haven't worked

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My partner has had pain in his thighs for past 18 months. Started as numbness then burning pain then stabbing. Mri scan showed a tight canal with little movement for nerves. He had lumbar decompression surgery in July which has not really helped. Pain clinic did nerve block injection which made it worse. He is taking 400 morphine per day also gabapentin and naproxen. He's at the end of his tether and I don't know what to do for him. Can anyone relate to this and share any info about medication that would help? He is increasing morphine over the advised dose and it's not as effective as he's becoming used to it. He's had the nerve tests also and they didn't show anything up. Hope someone can give us some advice, Lisa x

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  • Posted

    Hi lisa01539, I have had similar problems for 8 years now, no useful ideas from the "doctors", but I have now figured out that the stinging/burning feeling in the skin of my legs must be due to histamine production and toxicity created by my ever increasing morphine intake. I have reduced my daily dosage initially from 900mg/day to 360mg and now from 360mg down to 140mg. I now have no burning skin issues. I did each of these 2 reductions over 4 weeks which was somewhat silly but when i realised that it was the fault of the drugs I just needed to get them down to a less damaging figure.  If you think your partner may have similar symptoms do a search for both "histamine" and "opioid induced hyperalgesia" and ask your doctor if either of these are indicated. One of my symptoms of the histamine problem was that my legs had swollen slightly. Wish you all the best.

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    • Posted

      Thanks for the reply Katie. Omg 8 years!!! What the hell? What are they doing about it? I don't know about decreasing the morphine, he is in agony with stabbing pains, I think the burning has gone now. Do you take any other meds?

      Lisa

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    • Posted

      I am very sensitive to drugs and find them impossible to take in any worthwhile amount, even the gabapentin landed me in hospital, it had caused bleading in my lung and lumps to grow on my gums. Strange but true but beware of these 1in5000 side effects that drugs are capable of and must affect someone. I do hope your doctors are more inquisitive and helpful than mine are. I am today beginning a high vitamin C intake to try to lessen the effects of the histamine.
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  • Posted

    Hi Lisa, My problem does not seem to be as painful as your husbands,but I was diagnosed with 3 collapsed Lumbar discs and painful sciatica in the left leg. The pain in the leg is painful burning and stabbing from thigh to foot and my last 2 toes go numb. I do agree  with Katie about trying to reduce your husbands morphine intake as you can get very used to it and then it won't work. However, as your doctor  discussed a possible neurectomy? The meds I take with mine are 9 Gabapentin, 8 Tramadol, 8 paracetamol. When the pain is bad though they don't appear to work either. I really hope you can get a result for this as it's awful watching your loved one in pain. Keep pushing the doctors.

     

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    • Posted

      Hi Belinda, I've never heard of a neurectomy, did you have one? He has an appointment with the neurosurgeon on 14th so I will ask about it. Hope things improve for you too , thank you for the reply x

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  • Posted

    Hi Lisa, My heart goes out to you two. You have entered the reality of nerve pain and it's many challenges. This takes a big toll on everyone involved and you will be pulling on every bit of strength and perseverance you have. The disease is now PAIN. I have dealt with this for years, had every procedure there is even a nevro implant (stimulates nerves and works somehow to deceive the brains acknowledgement of the pain). It helps somewhat but now depend on medications for help which is what we tried to avoid! I want to share some of the thoughts and words that helped me to cope. It is important that your partner knows that he is not a whimp! He is a WARRIOR that is fighting every day, every hour to maintain his health and to have the best quality of life he can. You too Lisa. Another thought that helped me is - it is what it is - this is the new norm. So darn scarey and so life changing. My Mother and Grandmother were strong women and I use my memories of their struggles to help keep me more centered in this world of pain, I also pull on the determination that my son and my daughter have demonstrated over the years. 

    Please know you have my best wishes coming your way along with hugs for both. 🍀🍀🍀🍀🍀🌸🌺🌼🌻🥀🌹🌷

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    • Posted

      Thank you for your reply, you sound like such a lovely lady, hope you find an answer to your problem soon x
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