Do neuro symptoms of FM come and go?

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Jul 9, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi everyone

    I have a question for those of you with neurological symptoms... do they come and go like other symptoms?

    I've recently developed neuro symptoms but I have them everyday, all the time. They are worse in the evening. Numbness, tingling, neuralgic pain, migraines every day for the last 3 or 4 months.

    The reason I ask is that with CFS my symptoms would come and go, but since I develped fibro, these neuro symptoms have just become part of my every day life.

    These are definately the worst symptoms at the moment, and it scares me that they will never go away.

    Thanks and take care
  2. twitcher

    twitcher New Member

    I have mostly neuro symptoms and pain....numbness, tingling, twitching, burning etc.....They NEVER go away. It's very scary. I thought I had MS but I've had every test known to man to rule it out. All tests were normal. I've had these symptoms all day, every day for the past year. It's horrible. It's so bad I still doubt the fibro diagnosis and keep searching.
  3. katharine1229

    katharine1229 New Member

    I seem to have had the numbness, pain, tingling thing in spurts. It lasted me 4 months 2 years ago. It started coming back 2 months ago. I found out that a lot of it was inflamation pinching the nerves, although i don't know how this works in with the FM since I had these symptoms before anything else. Last time it happened, I took magnesium for only a week, and it was gone until now...and now that I just remembered that..I'm going to go take some magnesium!

    (anyone else having problems thinking??)
  4. Michelle_NZ

    Michelle_NZ New Member

    And after reading your posts I realise I forgot to mention the burning! Its horrible. My arms feel like the skin has been set on fire.. and its spreading to my legs now too.

    I've also been wondering if there is something else going on, more than the fibro. I did see a neurologist who was quite rude and basically told me there was nothing wrong with me.. in fact she said "You just need to get up in the morning, decide what your'e going to do that day, and just do it!!" I was so angry I nearly walked out!

    Thanks again everyone
  5. Michelle_NZ

    Michelle_NZ New Member

    Yes, I know what you mean. It is a relief to know its part of the fibro and nothing new. But the attitude of doctors telling us to just ignore it, get on with things, and that there is really notihng wrong - well, to me, its disgusting. They have no idea what its like to live like this every day.

    Take care
  6. twitcher

    twitcher New Member

    Even my scalp burns.
  7. 6t5frlane

    6t5frlane New Member

    It's amazing that if you go to the Lyme board you see the EXACR symptoms mentioned by a lot of people. CFS/LYME/FIBRO Whats the connection????
  8. martha2006

    martha2006 New Member


    Baffling here what I have. Fibro/Lyme? Labs are not accurate for lyme, hard to diagnose.

    6t5frlane , are you being tested for lyme crap?
  9. Michelle_NZ

    Michelle_NZ New Member

    I asked my Dr about Lyme. I live in NZ, where we dont have it, BUT I was living in Chico, CA 4 years ago.

    I started getting sick about 3 years ago after I got back to NZ. I've read that the Lyme symptoms can take years to come on, but my doctor poo-pooed my Lyme suggestion.

    Just thinking about it again, I think I will demand the test. I think its really expensive, and the blood gets sent to Australia, but its worth checking out I think.

    Thanks everyone
  10. musikmaker

    musikmaker New Member

    I have these symptoms and in my last flare they got really bad. Burning, tingling, twitching, tremors. My Doc suggested I try Cymbalta for this as it is also given to diabetics for neuropathy (sp). It has helped me very much. I still have some symptoms but nothing like before the meds. The Cymbalta also helped with my joint pain. Once I got on cymbalta, I could start to move around again....s-l-o-w-ly......don't get the wrong idea....did I say SLOWLY? :)
  11. sydneysider

    sydneysider Member

    I started getting severe headaches in my late teens, and was diagnosed with TMJ (jaw problem).

    Finally, at 45, I have been found to also have disk damage in my neck.

    The docs say they missed it, as it is not typical in younger people.

    I don't consider headaches that go on for months as a typical FM symptom (others may disagree). MPS, which can often accompany FM, may be a cause, or it may be something else. Also, tingling and numbness can be signs of pressure on nerves.

    Relaxing the muscles has been the best way of reducing head and facial pain, that I have found so far. I use heat, and occasionally muscle relaxants.

    I know how excruciating the pain can be, but useing the excellent suggestions from this board, you should be able to reduce, or even get rid of the pain, whatever the cause.
  12. minimonkey

    minimonkey New Member

    A lot of the Lyme specialists believe that Lyme is the underlying cause of most cases of CFS and Fibro.

    You're right -- the symptoms of lyme and the symptoms of fibro are basically identical.

    I was diagnosed with Lyme early this year (after a FMS diagnosis, a possible MS diagnosis,etc.) , after having been ill for more than 20 years, and have improved remarkably with 5 month's treatment!-- so I'd greatly urge you all to, at least, get tested for Lyme, particularly if you have neuro symptoms (Lyme infects the central nervous system)-- and bear in mind that the testing is not sure-fire, as late Lyme often becomes seronegative (the body stops producing antibodies). Also, many labs don't have very sensitive tests and can miss a lot of cases...

    Very sensitive and specialized testing is available at IgeneX labs in California.

  13. pam_d

    pam_d New Member

    Mine did. The first symptoms of FM I ever had were all neuro ones, such as twitching---I remember reading that it's like someone draped a set of those little Christmas lights around your body, then set them on the "twinkle" setting---numbness and tingling in my extremities, "cold" patches that would just appear on my leg or my head, etc. I think I started getting migraines around this time, also.

    I didn't get the pain associated with FM until much later, and it was never as big of a problem as the neuro symptoms, which BTW I saw a neurologist for, who ran every test in the book to rule out MS, Parkinson's, Lyme, etc....I had MRIs, Spinal Tap, EMGs, you name it. Nothing was positive.

    Anyway, to answer your original question, mine did come and go a lot, and for the past few years, they've been pretty much gone, or at least so reduced that I hardly notice them anymore.

    I never took any of the things people recommend for these symptoms, but there are drugs like Klonopin that help live with these neuro sensations. Some folks find relief from Magnesium, but I never did.

    I do know what you mean about these being the worst symptoms--I had quite a bit of anxiety over them, wondering the same thing you are, will they ever get better? Personally, I found pain easy compared to this. I can only tell you that mine did wax and wane, but also eventually got better to the point that it's really not an issue any more (I'm battling Leukemia right now, and I'm just very thankful my FM symptoms WERE very much improved---I feel like I'm fighting one disease, not two).

    Ask your doctor about any drug choices you might have, there are probably even more now---you may or may not choose to use them, but it'd be good to know what's out there, like Klonopin, that could help you. But I'm going to also hope you notice them less over time...

    Good luck to you.

  14. Michelle_NZ

    Michelle_NZ New Member

    It's really strange, but my neuro symptoms are much worse later in the day. In the morning, they are there, but not distressing, but by lunch time I'm really noticing them, and the evenings are just horrible. It's getting really hard to distract myself from them.

    I'll ask my doctor about the Klonopin.

    Thanks again, and take care

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