Your early signs of neuropathy

Discussion in 'Fibromyalgia Main Forum' started by robin, Mar 29, 2003.

  1. robin

    robin New Member

    I expect to hear from my foot doctor Monday on
    whether he thinks my foot pain (gone for now) is
    neuropathy or the START of it.
    to those of you who have it for sure, what were
    your earliest symptoms? And do you have RA also
    so the symptoms could be confused with an RA flare?
    I have no numbness at all in either foot; just the
    heat that was there for a couple of days. And may
    end up being a nasty RA flare in feet.
    I'd like to know more. So anyone who wants to
    share the beginnings of theirs and how you found
    out you had it and how you started treating it.
    Must have been a major disappointment too as I know
    if mine turns out to be that I am going to be
    devastated......absolutely.

    thanks,

    Robin
  2. Mikie

    Mikie Moderator

    Her neuropathy started out with tingling in her feet, moving on to more tingling, burning, numbness, and pain.

    Love, Mikie
  3. robin

    robin New Member

    Hi Mieke! Ohhhh, so she first had tingling, then more
    of same then it PROGRESSED to burning then numbness.
    Mine was just heat (burning) which has left, but I also
    feel a bit of swelling in the metatarsil area or the fat
    pad under the toes. That could be the RA. I haven't
    had any tingling or any numbness.....as yet. I am learning
    though that diabetes can be deadly and horrible with
    complications of which neuropathy is (complication) so
    I have to be SO alert and disciplined and, while that
    does not guarantee I'll never have it, I sure as heck
    can try to slow it down or try to prevent it.
    does your mom also have RA or just diabetes alone?

    Your name is familiar. Are you on any other website?
    I am and I go by Bobbin there. Are you the same
    Mieke I know from the other site or another one.
    How far along is your mom and how are they treating
    her. She hasn't had to have amputation yet has she?
    I also get Diabetes Forecast magazine plus another
    diabetic magazine so I can learn and do my darndest.
    But this is another very rough disease to have!

    Robin
    Bobbinrobin41@aol.com
  4. Mikie

    Mikie Moderator

    This is the only website I visit. My Mother died last July. She did not have diabetes. Nondiabetic neuropathy is a fairly common symptoms of our illnesses.

    Love, Mikie
  5. healing

    healing New Member

    I have a question: I get this tingling all up and down my legs, but not in my feet. I get burning on the soles of my feet pretty regularly -- hardly even notice it any more. But the tinglng up and down my legs is distracting. Is this common with FMS too?
  6. robin

    robin New Member

    Hi healing and others; don't know. I think my own
    burning in feet is RA inflammation but will ask my
    foot doctor.
    Those of you with neuropathy, would you help us out
    here?
    We can look neuropathy up on our Search engines too
    by tying the word into subject line and then reading
    some of the symptoms. I did that too.. I don't
    have any tingling yet, or any numbness in feet or
    legs....hard waiting for answers isn't it.

    Robin
  7. pam_d

    pam_d New Member

    If you are having an EMG to rule in or rule out neuropathy, at least the results are instantaneous (unlike so many test results we wait for)!

    I just had my second EMG in 4 years because my doctor felt my toe & foot pain, plus chronic tingling & "hot" feeling were neuropathy related. Same answer as before. I do NOT have neuropathy. This is just one of the many neurological symptoms my FM is characterized by.

    You may have neuropathy, but you may not....there is a definite subset of us here with very strange neuro symptoms as part of this DD.

    Good luck, hope you get your answer soon!

    Hugs,
    Pam
  8. Jill

    Jill New Member

    Hi Robin! I suffer from foot pain, all the time - mostly in toes. I took a nerve conduction test with a neurologist and that ruled out neuropathy. Good luck! Jill
  9. robin

    robin New Member

    Hi Pam, thanks for the message. Nice to know one
    can have "symtoms" but they may not be the dreaded
    neuropathy. So far I think the hot feelings Ihad
    before were an arthritic flare; but if not it may
    have been one of my other pain in the neck ailments.

    What is an EMG?? Doesn't sound like anything I have
    had. I thank God the burning sensation I had is gone
    at least for now. It did seem odd that I was burning
    only in the feet and nowhere else. An RA flare is
    usually covering more of the body not just one area.
    I also have fibro which has a ridiculously long list
    of symtoms of its own. I had UTI's (urinary tract
    infections) shortly after I got fibro and I was getting
    them monthly! I had them for 2 doggone yrs before the
    doctors put me on maintenance medicines (ongoing
    anti-biotics) MEANWHILE asking ME what was I doing!!
    Was I washing? PLEASE!! I wasn't drinking cranberry
    juice cause its too tart for me, although I suppose I
    could ask my GYN next time if we want to try taking me
    off the meds and have me swallow (like I'm sucking a lemon)
    the cranberry juice. It tried cranberry tabs but don't
    think they were helping. As my doctors have told me
    and I agree, I am a medical mess with too many overlaps.
    I am hard to treat.
    I am also going to change RA doctors. The one I see now
    has a clinic in my city, but says his REAL practice
    is in a hospital too far for me to go to. I do not
    believe I am receiving thorough care with him..just of
    a "clinical" nature. He keeps telling me to come to
    Lowell where all my real patients are; so, what am I?
    He obviously wants me where I don't want to go so I am
    going to start the channels of change this coming week.

    thanks for writing and I hope more will respond to my
    request for symptoms; when they got them; one thing I
    left out and I wish I had added; HOW are they feeling
    and/or responding EMOTIONALLY to all these burnings and
    tinglings and how are they treating them.
    I also type in "neuropathy" in the sites search engine
    to go directly to neuropathy posts.

    thanks for connecting,
    Robin
  10. robin

    robin New Member

    To Jill and any others; how do you deal with thek
    "always" pain in your feet! Doesn't the heat drive
    you batty? How do you bring yourself to a peaceful
    place with 24 hr pain or heat???? I cannot comprehend
    being able to live with that! That's why I am anxious
    about getting it. IF I do, HOW will I deal with the
    pain physically and emotionally? There is no break with
    the pain and/or tingling??? Anything to take for it??
    You poor kids! May God have mercy on you....and me if
    I ever get it!!

    I will come back to this board often to find any
    new responses.

    thanks
    Robin
  11. pam_d

    pam_d New Member

    An EMG is an electromyelogram (not sure I'm spelling it right) or nerve conduction study. It is a definitive test to rule neuropathy in or out. Some folks here have said how painful they are. Personally, I've had them twice now, by two different examiners, and it was mildly uncomfortable, but definitely not awful. But that just speaks to how different we all are in terms of what we can tolerate pain & discomfort-wise. You should really have one though, you might find out a lot from it.

    As I said, I have some pronounced tingling (no numbness, though) plus that "hot" feeling, sometimes a burning pain in my feet & toes, and often the feeling that someone's pinching my toes. PLUS my toes twitch involuntarily now (this comes & goes, but currently my left big toe is twitching wildly, like a nervous tic in my toe. I am a one-woman freak show, according to my teen daughter, and if I ever get over the fatigue-part of FM, could have a lucrative career in the circus)) Very annoying-----but in my case, NOT neuropathy. Mine currently is worse in my left foot.

    Ask your doctor about an EMG----at least you would know one way or the other. Incidently, I have been tested for MS, Parkinson's, Lyme disease, and the list goes on-----all negative, just appears to be a manifestation of the screwed-up nervous system I have with FM.

    Let us know what you find out,
    Pam
  12. pam_d

    pam_d New Member

    I'm sorry, you also asked about how someone FEELS about these pains/tingling, etc. & I think you wonder, how to cope. Let me say that these very strange neurological sensations & feelings & this odd type of pain are, by far, the hardest symptoms I cope with as far as having FM. FAR harder than coping with fatigue or downright pain. They can be very distracting, create horrible anxiety, cause sleeplessness (when otherwise I'd be sleeping OK) and just generally mess up my life. I am learning to do a little bit better with them, the longer I have a "history" with this DD. I'm starting to sometimes notice patterns. I find that the neurological symptoms do get worse, but often get better----and sometimes they seem to have no rhyme or reason WHY that's the case. I try to remember that they do wax and wane, and try to live with them, but it definitely isn't easy. Knowing I'm not the only one who copes with these helps; there is a definite subset of us with FM who tend to have many very odd neurological symptoms, the responses on this board to "neurological symptoms" confirms that. I try to remember that they are annoying as all heck, but not life-threatening. And they do come & go.....

    None of us are alone here! Hope this helps a little....

    Hugs,
    Pam