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Where to go now 1 year pain

Posted , 2 users are following.

marshall71
marshall71

Started getting numbness and pins and needles and lower back pain had MRI scan shows lower back disc flat DDD pain in si joint been on a cocktail of painkillers not all have worked and amitriptyline too

Now I'm on gabpentin 9x3 300 mg slow release tramadol 100mg 2 and capsaicin 2-3 times a day

Last week had EMG test came back normal

The tingling and numbness is there all the time blood tests are clear no diabetes also hot carpel tunnel in both hand had injections still pain.

3 doctors have said its peripheral neuropathy with no cause I know there is 100 types just wonder if it is PN even ?

Help please

Regards

Marshal

0 likes, 13 replies

13 Replies

  • Yorkyrebel
    Yorkyrebel marshall71

    Posted

    Similar problems here.  About 3 years ago had surgery on my foot which didn't go as expected.  So, 2nd surgery 6 months later.  The 2nd surgery also didn't go as well as Dr thought it would.  A year after the 2nd surgery, 3rd surgery which amputated one toe and some other repair work.  Have developed severe neuropathy in that foot, but also am experiencing severe pain, tingling, and numbness in arms, hands, fingers, and, of course, the feet.  I am on 2400mg Gabapentin daily, and tramadol 3 times a day.  The pain continues and I have now been diagnosed with rheumatoid arthritis for which I am taking Pacquinil (sp?) and Methotrexate.  

    I, like you, have been wondering lately if what I am experiencing is actually neuropathy or the RA.  Blood tests reveal no diabetes, and mostly normal on all counts.

    Sure am tired, though, of this continuous ailment.

    • marshall71
      marshall71 Yorkyrebel

      Posted

      Sorry to here of your on going pain it's terrible to suffer from this I also have the DWP on my case as I face a interview for my benefits it been going on since 2014

      The new slow release tramadol gives me awful cramp in my stomach plus not going too the toilet for days I take other over the counter to help this I was thinking it may be RA it runs in the family my mother has it very serious in her hands and fingers nobody has said anything to me I was told my neuropathy was unexplained and no caused to where it's come from I did have very bad chicken pox at 18 the virus can cause neuropathy

      Sorry to here your lost a toe must be awful experience my father lost legs after having gangrene in his feet I hope it's not going to be the same I have said this nothing was said as usual

      Take care and I hope we all find the bottom of this horrible pain

      Marshal

  • Paula05062
    Paula05062 marshall71

    Posted

    Horrible situation that I totally empathize with.  Have you gotten second opinions?  Has any suggested a TENS unit or a trial for a spinal stimulator?  Both are said to help nerve pain.  Neither worked on me.  I had had a couple of lamenictomies which somewhat took care of the spine/disk issues.  But leg pain can be caused by so many other things and wonder if this has been explored enough.  Does pain originate in the groin area?  If so, that's a hip issue.  I have just found that out and that is my current curse which may even be lifted.  You may even need some decent counseling from a psychologist who specialized in chronic pain because depression so often sets in and exacerbates the situation.  I hope this helps a little if not just offers empathy and support.
    • marshall71
      marshall71 Paula05062

      Posted

      Iam on the tens now as I type the last year has been hell been in so much pain the amitriptyline I took made me put a massive amount of weight on plus hearing things voices etc no some groin but no major at all no ops they said no to it my lower disc was a shock too see it was so flat yet they told it was normal in the letter I got it was only when I saw the pain doctor had it up on his PC screen

      Maybe small counselling I did say when I saw the pain doctor he said no

      The first thing he told me its nothing to do with your back at all

      Thank the message some interesting points

      Marshal

  • Yorkyrebel
    Yorkyrebel marshall71

    Posted

    Thanks all for the empathy.  Yes, I have had 2nd opinions but nobody seems to have any specific answers.  Sometimes I wonder if they don't look at you and in their mind say, you don't look like you're in that much pain.  They have no idea!

    I have tried the TENS units and they help some.

    I agree about the Tramadol - it plays havac on the intestines!

    • marshall71
      marshall71 Yorkyrebel

      Posted

      Don't think anybody has a clue what's going when your in pain all the time we wake up it go to bed it never leaves at all living hell is how I would say just put some cream on does ease it but it's still there.

      Paul

  • Yorkyrebel
    Yorkyrebel marshall71

    Posted

    Marshal - I so wish I could offer you some good relief, or news, about this affliction, but I have none.  Some say pray for help.  So far that hasn't relieved my pain.  I do find that if I keep busy it takes my mind off of it.  If you're able, you might try a walk outside or something.
    • marshall71
      marshall71 Yorkyrebel

      Posted

      Yes it's hard trying not to think about it playing my iPod helps a little or doing jigsaws is the new thing I'm into now keeps the Brain working

      Little hope I guess

    • Yorkyrebel
      Yorkyrebel marshall71

      Posted

      Have you tried the adult coloring books?  They are pretty good!
  • Paula05062
    Paula05062 marshall71

    Posted

    Marshall, you MUST get other opinions on your condition.  Where do you live?  You sound full of despair and some of it may be due to the medications.  I just went through the drudgery of getting all of last years medical records/MRI/ notes collected to bring to other doctors.  I have kept a copy for myself.  Just completing that odious task was empowering.  Do it if you haven't done so yet.  And then submit them to someone else for another opinion.  Can you do this?
    • marshall71
      marshall71 Paula05062

      Posted

      Live in Wiltshire Paula I just feel I'm hitting my head against a brick wall everytime I've been told it's PN then the test come back normal no nerve damaged also the DWP wants a face to face so I have that stress to deal with now to get into the right support group this had been going on since end of 2014 I have very good GP who's been really brilliant full of support he's says it chronic back pain yet the pain clinc says it's not nothing to do with my back ?
    • marshall71
      marshall71

      Posted

      I've had enough of pain taking drugs the side effects living like this
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