Help with next steps for neuropathy

Been through it all and now I'm stuck. I don't know where to turn next. Primary md won't help as far as pain relief. I have severe chronic pain from neuropathy in my hands. Often I talk about no one know anyone else pain. Well today I know for sure. Quick summary. Got diagnosed 11-12 years ago with it in my feet. They are now totally numb. I never went through a painful stage. My hands started about 2 or so years ago. I was in the hospital for edema in August. Ever since then, my hand pain had gotten gradually worse. By September I called my neurologist. Had EMG done again. It changed from small fiber neuropathy to large fiber polyneuropathy. Meaning many nerves. The pain continued to worsen daily. Referred to a pain mgmt clinic. That dr I met for 8 seconds and told me to try S lidocain infusion. I r was reaching at anything. Jan 4 was the infusion. I thought I was in the worst pain ever prior to the infusion. Wrong. 5 hrs later I was screaming in pain and it hasn't stopped to this day. I immediately stopped seeing him and have been in a wild goose chase. Another pain clinic told me they can't help me. I know it's cuz the 1st dr I saw left some nasty notes about me. I live where if you leave 1 pain mgmt dr within the same hospital affiliation, your all done. I'm black listed from ALL of the city/area I live in. Have an appt in Mayto get tested for the CAUSE of my unique neuropathy. But that's May. Appt with psychologist tomorrow to get some emotional help along with being an advocate. We all know being your own advocate doesn't work and isn't enough!!!!! Please, please, I'm up for suggestions as to WHO DO I GO TO NEXT???? Getting told "no" so many times has brought me to a bad place. I am out of energy. I won't live the rest of my life here on earth with this severe pain, can't feed myself, need help bathing, can't cook etc. you get it. It's pure torture.

Btw...neurologist just called and said there's nothing he or any neurologist can do for me. I'm losing my mind

7 Replies

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  • hi Ginakins,no your not losing your mind,however I understand your situation,and unfortunately all I can say yes the pains are relentless,and I've had many a conversations about neuropathic pains and yep I've been around the houses trying to get on top of this bloody painful condition and I've run out of options,what I find the hardest thing to get my head round that in this day and age there seems to be very little on the table offering substantial pain relief,I'm a few years behind you,but been suffering for 5 years,mine is the legs and feet in constant pain,but also have got it in my arms and hands,and you know fine well how it wears you down,the only thing is I'm blessed with is my mirtrazapine at night time,but got a feeling it's no longer working as well as its taking me ages to get to sleep,and then trying to find a cold spot underneath the bed covers is another matter,feel like my feet have been dipped in molten metal,pins and needles etc,and I'm physically tired and I want to go to bed,but no I'm having to stay awake until I fall asleep upright on a chair and then crawl under the bed covers and start the same restless routine,what a pain even trying to get to sleep and another day if wondering did I even get a decent nights sleep,and lack of concentration kicks in and then you realize that its been a broken nights sleep,so I can sympathise with you wholly on this matter and maybe someone can kick start some different forms of medications and who knows you might find something that suits you I wish you all the best,take care.

  • Hi Ginakins

    Are you in the US? I ask because you say "primary md" so am assuming you're not in the UK?

    It's very awkward to not want to see one pain consultant yet need to see someone else within the same department; one of their colleagues!

    Have you actually seen what the other consultant wrote about you? (As you say he/she wrote something nasty about you). If this is the case then you can file a formal complaint which should automatically entitle you to see someone else - even at a different hospital, who may have some different ideas??

    I know it's exhausting and all of this just adds to it but if it gets you in to see another specialist or a second opinion then maybe it's worth it? I understand the 'grabbing at straws' thing; we'll all try ANYTHING if it means some possible relief!

    RJC x

  • All I can say is that you are not alone. I have been suffering with severe neuropathic pain in my hands for five years since I had surgery for cervical stenosis. Since then I have tried various treatments at two infèrent pain clinics and I have also tried a number of meds. Nothing works. I am in France and I would like to try sativex which is a canabis threat spray but it is not available here except for MS. I have tried Kratom which gives some relief for a couple of hours but that is now banned here and in the U.K. as a legal high but I think it is still available in the U.S.

    Please let me know if you find anything that helps. I am in despair. No one can understand how terrible this pain can be. I drink red wine in the evenings which takes the edge off the pain slightly but alcohol is not really an answer.

    Where do you live? Thinking of you.

  • Sorry you are all in so much pain, have you tried any natural remedies, I know this sounds silly with so much pain thinking anything natural could work, but sometimes it helps, Google natural remedies for neuropathy, the B vitamins are very important and other remedies.

    I would never have believed that vitamin therapy could help or could be so important until last year my son was very ill, he had lots of neurological problems, we were starting to think that he might have psychiatric problems, then he was so bad one morning that we called emergency they though at first that he was having an epileptic fit, (he is 40 with no history of this), eventually they found after many tests that he had a problem absorbing nutrients and he was critically low on B12 and other B vits, (these affect the nerves in the whole body), and vit D and this was causing his symptoms. The change after just a few days on vitamin therapy was magic.

  • I am so sorry for your pain , my 92 yr old mom has,been suffering neuropathy pain to the point she,said I just cant live like this ! Last year she had shingles on her right side,,,shoulder to hand ,,,excruciating pain that lasted nearly 4 months, still has,twinges and 2 numb fingers,,,all of a sudden it started on the ' left' side,,,same shingles type pain.

    I asked at 92 yrs & being career RN would she consider acupuncture?

    Said,she would try anything , the first session seemed to ease it, still had bad bouts at night and throughout the day. The second session ,first night had thecwirstvevet pain all down left side ,,thereafter we are 5 days & nights with only small twinges, not pain. We are ecstatic and she is,going to continue treatments. Might be worth a try ?

  • And yes, got her on B vitamins, D, iron she does,take gabepentin,,,also supplement a Tylenol only when she had bad psin5, hasn't taken one since acupuncture and has dropped one gabapentin per day

    Yea !!!!

  • Dropped vitamin D

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