Anyone on this board have neuropathy ???

Discussion in 'Fibromyalgia Main Forum' started by robin, Apr 10, 2003.

  1. robin

    robin New Member

    I know it is mostly associated with diabetes which I
    have..diabetes 2 for only a year. My feet occasionally
    burn but DD says she thinks its from either my arthritis
    or fibro! Anyone on this board ever hear of it with
    anything besides diabetes??? Is my doctor nuts or am
    I unaware of this problem with fibro which I also have??
    I have an appt with a new RA doctor on Monday but I'm
    wondring why she thinks its from arthritis (already been
    to that message board) or fibro. Anyone on this board
    ever hear of it with arthritis or fibro?? SOMEtimes drs
    can drive me nuts...

    thanks,
    Robin
  2. pam_d

    pam_d New Member

    I just had an EMG (2nd time in 4 years) which ruled out neuropathy for me. I have tingling, occasionally burning, sometimes feel like my toes & fingers are being "pinched" at the tips. My doctor thought I had it (but I didn't) due to my symptoms, and apparently it is not that uncommon for FMers to have it.

    My husband (type 2 diabetes for 6 years) has it, and he describes his pain a little differently from mine. He has some numbness & tingling, and occasional pain that he says feels like "pin pricks". He's kind of used to it by now, & has a good attitude about it & complains far less than I do!

    Have you actually had an EMG? That is a definitive test for neuropathy, I believe. Otherwise you're just guessing....I have worse foot symptoms than my husband, or maybe I just obsess about them more (!) and mine's NOT neuropathy.

    Doctors drive us nuts a lot, huh???

    Good luck,
    Pam
  3. robin

    robin New Member

    HI ......I don't think I have had an EMG was it?
    forgot letters already maybe. Who gives it?
    RA doctor? Diabetic doctor? Either one?

    thanks for reminding me. I just made a written
    note to ask about having one so we will know for
    sure. You are right. I am guessing, but my foot
    doctor is the one who diagnosed me without any
    testing....just by my tense reaction to his touching
    my feet....I see a new RA doctor Monday and I can
    ask her! My old RA doctor (who I left after 2-3 mos.)
    didn't test me for it. I was not happy with his
    less than thorough checking me out and he kept asking
    me when I was going to such and such hospital WHERE
    HIS REAL PATIENT PRACTICE IS...so what ws I?? I was
    going to a clinic where he was so I guess he did not
    consider this a "real patient" place! Anyway I am
    gone and my new RA doctor IS in a hospital but much
    much closer than other doctor was!
    I'm a lady who prefers doctors to be as close as
    possible as it is more convenient. With other RA
    doctor I would have had to hit the highway and I
    hate highways!! I already know where my new RA doctor
    is so I can look forward to Monday....:>)

    thank you for writing! Appreciate it!

    Robin :>D
  4. pam_d

    pam_d New Member

    An EMG stands for Electromyelogram (I'm not sure I'm spelling that right). It is a nerve conduction study. I have had two, early in my FM symptoms 4 years ago, and another one just last month. My first was done by a neurologist, but my last one was done by a physiatrist (physical medicine doctor). Physiatrists are usually quicker to get in to see, and often have FM/CFS knowledge.

    My pain/symptoms SEEMED just like neuropathy by docs who examined me, but it wasn't----so yours may or may not be. Your rheumy won't do this test, but maybe she'd have a referral for you. You really should get it done, you'd have a definite answer then!

    Take care & good luck, let me know what you find out...

    Hugs,
    Pam
  5. Achy-shaky

    Achy-shaky New Member

    I'm not sure but I'm sure you can do more researh on this if you do a search. I know another kind of neuropathy called ischaemia which is lack of oxygen or slow circulation which is common in FM. There is also what they call traumatic neuropathy caused by an injury or emotional trauma which could also be FM related. I've never heard of it being related to arthritis but maybe.

    It was my orthopedic surgeon that ordered my EMG and I was told I had highly irritated nerves but no damage.
    EMG will pick up any nerve damage but not necessarily something like an entrapped nerve which can also cause nerve pain - that's the kind I think I have in my arm but I just had an MRI yesterday because I'v had frozen shoulder for 5 months now and they want to check for rotator cuff tear or tinitis so I'll be glad to get the results so I know what I'm up against. The pain from this has been the worst pain I've encountered yet with FM and only Neurontin helps - it's well know for helping nerve pain.

    Hope that helps.
    Shaky
  6. Mikie

    Mikie Moderator

    She had FMS and had non-diabetic neuropathy with the tingling, burning, and pain. She also had a lot of swelling in her ankles.

    Love, Mikie
  7. tansy

    tansy New Member

    I have cfs

    20 years ago I was diagnosed with polyneuritis complicating a viral infection. Now they refer to it as neuropathy.

    Interestingly it is worse on my left side but muscles are more affected on the right, this difference actually showed up on an EMG.

    It's always there but the symptoms and consequences of it vary a lot. My sensory nerves are more effected than my motor nerves.

    I do know though that my spine is responsible for some of these symptoms. So some of your symtpoms could be caused by arthritis if your spine is effected.

    Good luck on Monday

    Cheers

    Tansy
    [This Message was Edited on 04/10/2003]
  8. wolflake46

    wolflake46 New Member

    Robin,

    I was diagnosed with polyneuropathy 2 months ago is that the same thing? My feet have lost the feeling in them and they usually associate that with diabetics. I was tested for that and I don't have that. There is nothing the doctor will give me unless they become painfull, which so far they aren't. My neurologist said it has nothing to do with my FM.

    Diane
  9. Carlacat

    Carlacat New Member

    I have small nerve neuropathy in my feet and lower legs. They didnt find it with an EMG either..I have a sweat test done and I'm not sweating in those places. I also have POTS so it is autonimic and its all connected thru my nervous system. And there is no explaination on how I got it cause I dont have diabetes. So along with the FM and CFS I get the please of dealing with all this other. Its miserable!!!! Not being able to walk is killing me..I go so far and the pain is so intense. I try and clean up house for one hour and I sleep afterwards for two hours. Life is grand especially when I'm only 39.
    Carlacat
  10. cookiebaby

    cookiebaby New Member

    Hi Robin:

    I was actually diagnosed with peripheral neuropathy before the fibro -- by a neurologist, after having had the EMG and nerve conduction tests. I've been on a message board for PN in the past and read a fair amount about it. What I do know is that the majority of people with it never know what causes theirs, unless they have diabetes or have had exposure to heavy metals (not the music) or chemicals -- or some prescription drugs also can cause it, and chemotherapy also I believe if I'm remembering correctly. I believe it is quite common for people with FM to have certain problems like carpal tunnel syndrome and repetitive strain injuries which can exist with and sometimes result in neuropathy. I had carpal tunnel entrapment in both wrists in the past, but it was no longer evident on the last EMG. That doesn't mean that I no longer have pain there. At least the way it was explained to me the word neuropathy itself means damage to the nerves -- the extreme burning sensations (which are also sometimes accompanied by an extreme sensation of freezing cold) and the pain are the worst before you lose the feeling in that area. I know for me I had a year or so of being unable to sleep at night because my feet would feel like they were on fire yet they would be cold to the touch. Sometimes the pain in my forearms has been so severe that I've been screaming. I have very little feeling in my feet and fingertips, and it's working its way up my lower legs and through my hands to my forearms.

    Anyway, my neurologist has worked with me to find pain meds that address the different kinds of pain coming from the FM and from the PN. They are definitely different in most cases -- but there is fatigue resulting from both and they can both be limiting to your activity level. Actually my neurologist has been more helpful in treating the FM than the rheumatologist who diagnosed the FM -- and he actually sympathizes with the pain, whereas the rheumy just passed it off as "just part of the FM -- you'd better get used to it!" Then he told me I didn't have to come back unless I developed new symptoms -- I told him not to worry, it wasn't worth my time to see him again!

    Well, if you'd like any info on the neuropathy message boards or websites etc. write me off-list here (get my e-mail from the member profile, etc.)

    Cookiebaby

    Good luck!
  11. TerriM

    TerriM New Member

    peripheral neuropathy. I have insulin resistance, but not diabetes. My blood work for this is actually improving, but I am having tingling in my fingers and very sore soles of my feet . . . my doctor said this type of neuropathy is most closely associated with diabetes or heavy metal toxicity, so I am now going to be checked for that . . . Love, Terri
  12. robin

    robin New Member

    Hi there....WHAT is the EMG (?) test that several
    have mentioned to me and I forgot to ask. How is
    it taken. What do they do in the test. A blood
    test or what. I hope touching my feet isn't part
    of it as they are so sensitive. If you spell the
    letters out, what do they spell?

    I have been on the neuropathy board on the diabetic
    board and they brought up that test too. Who takes
    it. Can my new RA doctor do it or will she have to
    send me to someone else?

    Boy you have your troubles too eh? I sure hope mine
    doesn't spread. I have enuff trouble with the feet.
    I thank God it isn't daily yet..just occasional.
    I didn't burn for 3-4 nights, then tonight I am, so
    thank God for relief nights.

    thanks for writing and I hope you will write again
    on this board...maybe start a new post and click
    on the box and I'll get the message I have a message
    from that. Maybe. I'll be checkin back anyway. Will
    save the e-mail that sent me here so I can find you
    again.

    Robin
  13. robin

    robin New Member

    I am so sorry about your pains! How discouraging!
    When I do my prayers tonight I will add you to it,
    asking God to help you in some way soon. I'd print a
    prayer here but this is the wrong place for it so
    just know I will pray for you and others tonight and
    in the future. I will save the e-mail that sent me
    here and check on you now and then to see how you
    are doing. I'm a mess too but most of mine can be
    treated with something....like my IBS is helped by
    Kaopectate and drinking Citracel every other morning.
    I need different RA meds so I hope my new doctor who
    I see MOnday will be helpful with that...
    I also need more help with finding out why I burn
    in my feet. Tonight the burn is bearable so hopefully
    I will sleep; and some nights it disappears after a few
    hours.

    thanks for writing :>)

    Robin
  14. robin

    robin New Member

    Hi Betsy...ooooo..the EMG test is painful?? that lets
    me out. I have enough pain! What do they do in the
    EMG test??? I don't want it if it hurts.
    I forget the name of the T stuff you take which helps
    you but will save the e-mail from website that got
    me here and write it down for my new RA doctor MOnday.
    Lord I hope I can find out without more pain!
    Why is the EMG test painful....??
    I am SO SORRY about all your pain. Boy this neuropathy
    stuff is ,well, you said it....I'll add you to my prayer
    list too for God to lead you to good doctor and right
    medicines. Every night and day I pray for many of the
    people I meet on these boards.

    thanks for sharing! :>)

    robin

  15. robin

    robin New Member

    Hi...I have both arthritis, fibro and osteoperosis in
    my spine, so we'll see what doctor comes up with....
    aint' being a senior citizen wonderful?? :>( When does
    the golden yrs start?
    You may not be a senior yet, but I am..thanks for writing.

    Robin
  16. robin

    robin New Member

    Hi...I have both arthritis, fibro and osteoperosis in
    my spine, so we'll see what doctor comes up with....
    aint' being a senior citizen wonderful?? :>( When does
    the golden yrs start?
    You may not be a senior yet, but I am..thanks for writing.

    Robin
  17. robin

    robin New Member

    Hi...I have both arthritis, fibro and osteoperosis in
    my spine, so we'll see what doctor comes up with....
    aint' being a senior citizen wonderful?? :>( When does
    the golden yrs start?
    You may not be a senior yet, but I am..thanks for writing.

    Robin
  18. robin

    robin New Member

    Hi...I have both arthritis, fibro and osteoperosis in
    my spine, so we'll see what doctor comes up with....
    aint' being a senior citizen wonderful?? :>( When does
    the golden yrs start?
    You may not be a senior yet, but I am..thanks for writing.

    Robin
  19. robin

    robin New Member

    thanks for the message. good to know. Get back
    to you later :>) Had warm feet last night but not bad
    enough to keep me awake thank God :>)

    Robin
  20. tansy

    tansy New Member

    Although I felt discomfort when my thigh muscles were tested it wasn't as bad as others were describing; even when one test set off the most amazing spasm that just refused to ease down.

    So I guess having neuropathy has it's benefits if you're lucky enough to have the sensory nerves involved already in their semi numb state when the test is done.
    Cheers

    Tansy