Need support for neuro issues....

Discussion in 'Fibromyalgia Main Forum' started by pam_d, Mar 31, 2003.

  1. pam_d

    pam_d New Member

    You guys are the greatest here at providing support and good, sound advice, always much appreciated.

    I also feel I need a local support group, or maybe almost a therapy group, with people who experience the neurological symptoms I do. Right now I'm giving my all to doing a very restrictive rotation diet, due to food allergies, in an effort to maybe find the key (or a little part of it) to my FM improving. I was feeling pretty good, at least feeling proactive that I was DOING something good for myself, when the neuro symptoms----always worse for me than anything else----came on like the flare from h**l. My whole left leg feels like it's asleep, my toes and calf muscles twitching weirdly, everything tingling, plus fatigue----but because my body is in such a hyper-nervous mode, relaxing or sleep is pretty impossible.

    Really needing to find someone who even understands this stuff----how bizarre this stuff feels.The need to communicate & not feel alone is really overwhelming. There is a local fibro group in my town, but no one seems to share these neuro symptoms or not to the degree that I do. They are a big part of my daily life with FM.

    I've never looked for a "neurological issues" support group, I can't imagine there is one! Even my doctors just say take B-12, or more magnesium & calcium----I do all that! They give little importance to the neurological aspects of this DD.

    Thanks for letting me vent, guys....I try not to, but this is a tough night for me.

    Hugs & hope you are doing much better than me,
  2. Achy-shaky

    Achy-shaky New Member

    Hi Pam,
    I don't remember your history but have you been checked for restless leg syndrome? It normally acts up at night or when you sit for a long time but it can also be a constant thing. I have this condition and before I got the right medication it drove me nuts - my legs would hurt horribly, my feet would tingle, twitch, and have a creep crawly feeling. I'm taking Mirapex which helps to replace lost dopomine and is normally used for Parkinsons but works well for some cases of restless was a Godsend for me. It also makes me sleepy so I take it around 7 and I'm out by 9-10. It doesn't keep me sleeping all night but I get a good 4-5 hrs before my other pains wake me up.

    If this is not what it is maybe it's lack of some type of vitamins...potassium is very important as well as the magnesium and calcium.

    Hope that helps
    Hugs & Blessings

  3. joannie1

    joannie1 New Member

    I know how flustrating this can be. Infact I am going thorugh a sleepless night because of my legs tonight. You are not alone on this. It is flustrating and agrivating and makes you want to scream. I get so exhauseted that I feel I could fall over but sleep doesn't come because my legs go flipping and flying and it causes such pain. Have you been to a Neurologist yet to possibly see if you have restless leg and get meds for it? If not you really should. I myself am heading there on friday and am definitely going to plead for not only my head pain but my leg pain too.
    Good luck and know your not alone okay.
    Big hugs to you.
  4. pam_d

    pam_d New Member

    For listening to my frustration, and your responses. Always helps to know you're not alone......though I wouldn't wish this on anyone......

    Achy-Shaky & others: When I first got these symptoms 4 years ago, I learned about RLS and wondered about that. I fact, I had to take an informational sheet to my doc at the time; she'd never heard of it. Mine is definitely constant rather than just at night, and in some ways fits the RLS pattern, in some ways doesn't. I'll revisit this issue with my doc at next visit---thanks. Does Mirapex have side effects? I'm very scared of prescription drugs, only use pain meds if absolutely necessary......would love your input on this.....

    Memory Lane: I'm doing an allergy diet, which involves eating any food only once every four days. I found I was allergic to so many things, it's hard to find nutritious, balanced foods to eat, but I think I am doing this. Please tell me a little more about what electrolyte imbalances do, is it just potassium loss to be concerned about? I eat salt, eat bananas for potassium (but only once every 4 days due to rotation) drink a lot of water------could my electrolytes be out of balance? Don't know much about this topic!

    Thanks again for the kind support, I'm really feeling discouraged & your words always help.

    Hoping for a better day for all,
    [This Message was Edited on 04/01/2003]
  5. pam_d

    pam_d New Member

    Thank you, too----I have visited a neurologist, too, it's been 3 1/2 years now, I actually thought I had Parkinson's then because of tremoring toe, Had many tests, at the time they ruled out Parkinson's, MS, lyme, etc. Can't remember how much we discussed Restless Leg, I had heard of it & initially wondered about it, because I have these symptoms......will bring it up again with doctor......

    Thanks again,
  6. marcus1243

    marcus1243 New Member

    Just weighing in here to say sorry you're feeling bad and I hope that the flair passes soon. I think you know what I'm talking about when I say that the neuro symptoms are worst for me too -- tingling, burning etc. I'm generally doing much better these days, but I did have a minor flare some weeks back, and the main symptoms were burning and tingling. It gradually passed over a couple of weeks, and now I'm back to having very few symptoms. I'm afraid I can't offer much constructive advice except to say that I am convinced that you have Fibromyalgia rather than anything more sinister and that I'm sure that what you are experiencing is a fibro flare. It will get better again, I am sure.
    I guess we're still a long way from understanding this dd!

    Best wishes,
  7. pam_d

    pam_d New Member

    I've been wondering how you were doing these days!! I know you were having a tough time a while back, while I was feeling better; now we're reversed, but I'm glad you're feeling better! I know you suffer the same kinds of neuro issues I do, wish I could figure out what makes the flares happen??!!

    Do you still use the Aloe Vera Gel drink? I am now on this 4-day rotation diet for severe food allergies (which I think is at least a little piece of my underlying FM "puzzle") it's very strict......I'm not sure I could use the gel drink more than every four days.

    Good health to you, hope you continue to feel better!

  8. marcus1243

    marcus1243 New Member

    I'm still using the Aloe Vera, though I have to be honest and admit that I'm increasingly sceptical about its benefits. Sure I felt great after I started taking it but then I had a nasty relapse too. It just seems that we flare and go into remission in spite of our meds & diet. My biggest problems now are actually eye issues -- intermittent blurriness/ghosting and severe 'afterburning' of bright objects. It's a big concern, though there is a structural explanation for this because I have early cataracts thanks to the Fibro. The neuro symptoms are mostly in remission now, though I sometimes get tingling and burning when I flare. Muscle pain, fatigue and weakness is also a problem, though it seems to switch on and off a lot.
    I think that you're doing the right thing checking into your diet. Have you considered mercury toxicity screening?

    Best wishes,
  9. pam_d

    pam_d New Member

    I definitely have a higher than normal level of mercury toxicity (was tested by the same allergist/immunologist who did my candida & allergy testing). It's not off-the-charts high, but definitely in the high range. Several years ago I got a bunch of amalgam fillings replaced by my dentist over a period of about 14 months; at the time, I didn't know anything about mercury being in amalgam, or that when you replace fillings, it leeches out into your body unless done by a dentist trained to use a special procedure----I was just having some fillings that were starting to deteriorate replaced. However, during this time, is when my first neuro symptoms started.....suspicious, huh?

    I've already done one round of chelation therapy to remove the mercury from my body, scheduled to have my remaining two amalgam fillings replaced (by a trained dentist) so we'll see what happens.....

    Marcus, I can't remember which post it was, but someone was talking about a much higher incidence of cataracts with those people who have had previous steroid use----don't know if you are in that category, but check old posts for "cataracts" if you are.....

    Glad to hear that the neuro effects are at least better, maybe there IS hope....I agree with you about flares, mine seem to have no rhyme or reason. Sometimes I overdo, or am under huge stress and DON'T flare, but DO flare for seemingly no reason.....never have understood the patternd of this DD!

    Good health to you,