Discussion in 'Fibromyalgia Main Forum' started by BHopeful, Sep 13, 2006.

  1. BHopeful

    BHopeful New Member

    This is the 1 major symtom my docotr and I are trying to stabalize so we can address other factors. So far the things I'm doing are:

    klonopin & lamictal at night
    effexor XR morning
    xanax during the day if needed (but can really wipe me out)

    I'm also doing epsom salt baths on the weekends, but the burning just keeps continuing. And it is everywhere below my neck (stomach, arms, private parts, legs, feet). It hurts so bad.

    I think it's from an infection effecting my nervous system and/or from neuro toxins. I'd love to clear these things and my docotr is open, but in the meantime I just need to stabalize so I can ficntion, eat, sleep, gain some weight, etc.

    Any suggestions? Please let me know.

  2. mollystwin

    mollystwin New Member

    My SIL had similar symptoms and she just recently tested positive for Lyme disease. She had four previous tests that were negative, but then got an Ingenex test and was positive. You should consider this.

    Also on Mystery Diagnosis last week there was a man who had burning mostly in his feet, also had a rash on his hands. He had kidney disease.

    I hope you figure out what is going on. It's so frustrating trying to get a diagnosis sometimes.
  3. crdmkr2004

    crdmkr2004 New Member

    I used to take Neurontin (Gabapentin) and it worked great, my rheumy just took me off it because I was up to 3600 mg per day and he changed me to Lyrica (pregabalin) I am up to 600 mg of that now and haven't found it nearly as effective as the Neurontin. I had to ask to have my next rheumy appointment bumped up because of the burning pain and I am going to ask him to put me back on the Neurontin.
    Hope this helps.
    Good luck
  4. klavawithcin

    klavawithcin New Member

    Would this help? Perhaps you can ask your DR.

  5. BHopeful

    BHopeful New Member

    I'm just trying to remember that it wasn't this bad last week so I need to take it day by day.

    I'm seeing the doctor again on Monday and a friend is coming over tonight so I'm not alone with this pain (thank god for friends).

    I will certainly pose some of your suggestions to my doctor though. Please let me know if you have any more.

    Thanks everyone - feel good that you made me feel better by beig there when I needed it

  6. tscattaglia

    tscattaglia New Member

    Neurontin Has saved me. I have been taking it for 7 days, and am over the side effects. it actually cut my burning off in 1 day. I know how you feel. Take care
  7. tonakay

    tonakay New Member

    I take 100 mg. of topamax at bedtime for leg nerve pain. It's really helped me. I've been on it three or four months now. It helps me sleep too and I haven't had a migraine since I started on it either. Sure hope you get feeling better soon, nerve pain is HORRID !!

  8. BHopeful

    BHopeful New Member

    Thank you all! This board is wonderful!! Keep the suggestions coming. You're giving me hope - which is needed just as much as relief.

    Hugs and good thoughts to all,

  9. MsOnlyMe123

    MsOnlyMe123 New Member

    Feel terrible for you. What I suggest and what I have and do. Chronic wide-spread pain of FM and CFS for 10 yrs. along with Cupple Tunnel in both hands.

    My Neurologist put me on Neurontin (Gabapentin - generic) 3 years ago. Especially my right hand will feel in flames of FIRE. I take Gabapentin (generic) it helps me better than the brand for some strang reason - 900 mg. at bedtime. I cannot miss one day of it or I will pay dearly. If I do too much with my hands or just because and they go on fire and auful pain, I soak them in Epsom Salt and whatever temperature water feels comfortable at the time. Also, I spray on Solarcaine (Aloe Extra Burn Relief) used for sunburns and also use ice packs.

    I really hope you find some sort of comfort soon. It's really great that you have a friend coming to help you. The two I do have and have known both for 20 something years don't bother much with me since my giving days are over to most.

    That's why I am:


  10. tonakay

    tonakay New Member

    FYI... topamax is in the same line of meds as neurontin and lyrica. I tried a sample bottle of lyrica, 50 mgs at bedtime. I only made it 4 days b4 I threw the bottle away, my feet and hands were both swelled so bad I couldn't stand it.

    Anyway, wishing you luck and check back and let me know what you and the doc decide is best for you. Good luck friend!

    [This Message was Edited on 09/13/2006]
  11. shylo

    shylo New Member

    I have just started having this since I had taken cymbalta.I had a severe reaction to cymbalta when my dose was increased to 60mgs and it was like a overdose reaction.

    I know that mine was the cause of this med and I also found out that I should of never been on this med from a friend of mine whos fiences mother is a nurse with a batchlers degree and this has caused severe health problems for me and she is going to help me with all of this.

    I never did have burning pain all over before taking the cymbalta so it could of caused damage in me.
  12. BHopeful

    BHopeful New Member


    Try not to worry about damage. Our bodies can heal. Mine has proven that to me many times and it's one of the few things that keeps me going.

    It's just so interesting how 1 thing helps so many and can be just as bad for others. It really is trial and error I guess. I'm so sorry for anyone who deals with this stuff alone. I've talked to 5 friends (all long distance) and my older brother (local). I don't know what I'd do without that support.

    I've had a lot of success in the past with intramuscular glutathione/ATP injections. Large ones (10cc) from the doc. It seems to really get in the system and work things out. Anyone else try this? I was doing this once a week, but may increase since I've been in a major flare. It all sucks because I was doing better this past Spring, but oh well.

    Seriously I've been so overwhelmed by this boards support today. You guys are the best. I'm here for support to. I live in Chicago and want to find a large face to face support network here as well.

    Sending love to all,
  13. dschaal

    dschaal New Member

    I'm new to this board and am really thankful to have found it. There is alot of information here and I'm finding I'm not all alone. I was dx'd with Fibromyalgia last Novemeber. Ben, I also am taking the ATP shots once a week. I just started them in March, so we will see. I'm taking Lyrica 3x day(50mg) which really is helping. I'm also taking Cymbalta (60mg), Lunesta once a night and tramadol for pain. None of these are really helping me at all. My dr says she can get me up to 80% better with those shots so I'm still waiting. I was just having the tingling in the hands and burning in the feet, now I'm having the burning all in the shoulders and also my private parts. That is something new to me..and I was feeling really bad this weekend and went to my family dr who says I have a kidney infection. So I'm wondering if this is why I'm having all the burning all over. It's something I'll have to ask my Fibro dr when I go in to see her. I'm also learning that when I get sick, like with this kidney infection, I get really really low, so down that the depression is awful. I've never had a problem with depression before I got the Fibro. I quit my job last year to try and get better, then went back part time to the same job in March of this year. I was feeling pretty good too. It started out 2-3 days a week for about 4 hours. Then he started pushing more days and more hours which I thought I could honestly handle. Wrong...I'm back where I started from last year. All that hard work in trying to get better has come undone. So my fibro dr told me I needed to quit that job. So I did...and I'm not working now. My hubby has been very supportive too which has been a big help. But I don't have anyone to talk to about all of this. My dr will only allow minutes...seems none of them have time anymore for their patients. So I don't really get to talk to her and tell her everything that is going on. Ben, how long did it take your shots to start working and did you feel a whole lot better?

  14. BHopeful

    BHopeful New Member


    So sorry to hear about the ups and downs. Your story is very similiar to mine. The kidney infection could be a major source of your pain (especially lower back and private parts, which is the worse).

    I feel when you get that cleared up you'll feel a lot better. I really do. Think of the infection as a sign of what your body needs to start healing. Just make sure to eat yogurt and take probiotics while on the ABX.

    In terms of the shots, I noticed an improvement after the very first one, but make sure you're getting glutathione/ATP - NOT just ATP. Glutathione is a main thing we're laking and the ATP just helps get it inside the cells.

    I haven't had one in 6 weeks, which is maybe why I'm struggling. They are not a cure, but for me they got me functional again so you can start looking into other causes and safely trying stuff without major relapses. I even started excercising again. I really hope they work again for me. I need something.

    Hang in there - I'll think good thoughts tonight that your infection clears and the burning lessens.

  15. cherylsue

    cherylsue Member

    Who is giving you your glutathione shots? I'm glad to hear they are helping you. I live in Chicagoland, and I was wondering who your doctor was that was helping you.

    Thanks for your input.

  16. BHopeful

    BHopeful New Member


    I think it's the same doc as yours - Dr. Papernick at Rush. I just started seeing him again. I was living in NYC for a year and a half. I think a lot of my recent problems have been related to me moving (stress can kill us).

    I just showed him the paperwork that I had my NYC docotr write out regarding the shots. I was hoping to stop them. Were covered by ins in NYC - don't know if they will be in Chicago. I obviously need them though and Papernick seemed open to giving them.

    I'll let you know what kind of results I get and maybe you can have him do it as well. I'm sure it would be easier for their office if more than one patient was doing it.

    Hope that helps. If that's not your doctor, let me know and I'll write down what the instructions are and how to order the glutathione/ATP - make sure it's preservative free.

  17. BHopeful

    BHopeful New Member


    I don't know what to do except pray and breath deep, but the pain is unbearable.

  18. tonakay

    tonakay New Member

    Can you get into the doctor any sooner than Monday? That seems so far away with all the pain you are in! How about the ER?
  19. BHopeful

    BHopeful New Member

    What do they do though and how do you present your case? The last time I went into an ER with major nerve pain - I was put into a psych ward. I can't go through that again.

    That time I self admitted myself though as I really didn't have a doctor and was having major anxiety attacks over the pain so psych ward made the most sense. That was 6 years ago.

    I have thought about the ER, but I'd like to hear from soemone who has gone in for pain. Do they inject you with something. Anyone with experiences please help!!

  20. cherylsue

    cherylsue Member

    Sorry to hear you are in a major flare with burning. I thought the glutathione ATP was helping you.

    I have burning, too, which started up with this relapse. It's subsiding somewhat, but I just have CFS not Fibro.

    Yes, we share the same doctor. He's the only one who comes close to understanding this disease.

    Are you sure you are not having a reaction to some medication. That can cause burning, too. I'm allegeric to Cipro and Levaquin. That can cause the same burning.

    My thoughts are with you.


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