peripheral neuropathy and CFS? Anyone?

Discussion in 'Fibromyalgia Main Forum' started by MsE, Apr 15, 2012.

  1. MsE

    MsE New Member

    Have any of you who have CFS also developed peripheral neuropathy? I do not have diabetes. This came on rather suddenly. The fingers of my right hand are numb at the tips and the skin is cracking. Very uncomfortable. Is this another CFS/autoimmune/whatever problem? I know it could be related to my neck, which is not in good shape, and have been to a physical therapist for several weeks before I gave up on that. Any info would be helpful. Thanks. MsE
  2. mbofov

    mbofov Active Member

    I've never had this problem, but a quick search showed it could be related to your neck (as you already know!). It could also be related to hypothyroidism, which was surprising to me. And diabetes of course, but that's not an issue for you.

    I also know that low B12 can cause peripheral neuropathy in various parts of the body, something else to consider.

    Hopefully someone else may have more info for you -

    Mary
  3. ghosalb

    ghosalb New Member

    it is happening to my toes for years. Comes and goes. I have CFS but no diabetes. Large areas of my foot goes numb and then goes away. I don't worry about it anymore. Neurologist had no idea.
    Hope it helps.
    Bala
  4. MsE

    MsE New Member

    I appreciate the feedback. I have neuropathy as a result of a mastectomy, left breast, for cancer. But this is my right hand, so I don't think it's related to that. It's good to know that someone else has had problems with it and that it may be CFS related.
  5. MsE

    MsE New Member

    Hi Mary. Yes, I've checked thyroid. All's well in that department, and I started B12 a week ago in case that has something to do with it. I appreciate your trying to help. I am just hoping it isn't caused by my bad neck because that would mean a drastic surgery and I'm too worn out for that. I had two surgeries for cancer last year and just don't have what it takes to consider another surgery.
    I guess I am hoping the B12 helps or that I learn that CFS and this problem sometimes go together. Thanks again.
  6. mbofov

    mbofov Active Member

    You've been through a lot! I hope the B12 helps.

    My sister who had been a vegetarian for many years starting getting numb patches on various parts of her her body which disappeared after she started taking high doses of B12.

    Best wishes,

    Mary
  7. MsE

    MsE New Member

    Do you know what dosage your sister used? If you don't could you find out?
    Thanks so much. MsE
  8. deepak

    deepak Member

    I have been getting peripheral neuropathy on and off too , since a year.

    I have been taking high dose Vitamin B12 5000 mg Jarrow formula. It is helping me. I also take Solgar metafolin and some potassium. It is a part of what is called Freddd's B12 protocol.


    With love,
    Deepak
  9. gb66

    gb66 Well-Known Member

    I've had peripheral neuropathy for several years. I've had CFS/FM for 33 years. My ob/gyn told me that it was related to the fibromyalgia.

    I developed diabetes recently and that also causes it but mine started many years before the diabetes.
    I always thought it was the CFS but she said the FM. Don't think anyone really knows. lol

    Mine is in my feet mostly, some in my legs. My diabetes is under control so I'm hoping it won't get worse. With CFS and FM though it could. I'm sorry you're having this problem. GB66
  10. deepak

    deepak Member

    I have been getting peripheral neuropathy on and off too , since a year.

    I have been taking high dose Vitamin B12 5000 mg Jarrow formula. It is helping me. I also take Solgar metafolin and some potassium. It is a part of what is called Freddd's B12 protocol.


    With love,
    Deepak
  11. MsE

    MsE New Member

    5000 mg's huh? I've been using one 2500 mcg sublingual tablet daily, per bottle instructions. Not enough to turn it around, huh?
  12. deepak

    deepak Member

    Dear MsE,

    If you do a google for Freddds B12 protocol you will come across the information.

    Rich Van here is very very knowledgeable about B12 and has his own protocol which many have used with success. It is just that I came across Freddd's first- I want to switch to Rich's too but am awaiting his reply if I can do that.

    I am sorry it is 5000 mcg and NOT mg. I apologise - get confused :)

    With love,
    Deepak
  13. MsE

    MsE New Member

    Okay! Thanks for the clarification. So, I'll try two tablets a day instead of one. I understand B12 washes out of the system if it isn't needed, so that should be okay. Thank you. MsE.
  14. mbofov

    mbofov Active Member

    I've been off the board for a couple of days, and just saw this.

    My sister started taking a product by Now Foods called Ultra B-12. It's a liquid and each teaspoon has 5,000 mcg. of B-12, a combination of cyanocobalamin, methylcobalamin and dibencozide, as well as other B vitamins.

    I'm not crazy about the cyanocobalamin, but it did work for her.

    It also has folic acid which I'm also not crazy about. Folic acid is a synthetic form of folate which many people have trouble utilizing and which can even cause a folate deficiency. A much better form is l-methylfolate (Metafolin brand name) which is a bioavailable form of folate - I think Deepak talks about it here.

    However, this product worked for my sister. She noticed a difference in about a week.

    There is a product called Superior Source No Shot B12 which comes in 5,000 mcg. dose (it's methylcobalamin) and dissolves instantly and I think it's supposed to be a very good product. I'm currently taking Jarrow 5,000 mcg. sublingual tablets but I do think the Superior Source is better, but it costs more so is a trade-off. I also take 800 mcg. of Solgar brand folate (metafolin) together with the B-12.

    Hope this helps!

    Mary
  15. MsE

    MsE New Member

    Yes, it helps! Thanks to you and the others who have posted, I now know that I wasn't taking enough B12 to do the job. The other supplements you guys have mentioned are all new to me, with the exception of folic acid. That I knew about. Thanks to all of you.
















  16. deirdre2012

    deirdre2012 New Member

    Immune System and Chronic Fatigue Syndrome (CFS) Specialist, Dr. Jon Kaiser, is looking for 20 patients with significant CFS symptoms to help him continue testing a new nutrient-drug hybrid treatment that has already shown promise in a significant number of CFS patients.

    The treatment combines a low dosage of a currently available medication with a potent nutrient-antioxidant cocktail that boosts immune function to provide CFS patients with a healthy and balanced increase in their energy level. The trial will last for one month. The office visits and the nutritional supplement are provided free of charge. There will also be an opportunity to continue this treatment beyond one month, with your own Dr., if you wish to continue. Dr. Kaiser’s office is located 30 minutes north of San Francisco in Mill Valley. The patient must be present for the initial enrollment appointment; other appointments can be done by phone.

    Conditions which may exclude a person from this trial are: significant fibromyalgia, a history of heart disease, uncontrolled high blood pressure, major depression, or ulcer disease.

    For more information or to enroll in the trial, please email Anne Lahaderne at a.lahaderne@mac.com or call her at (415) 381-7655. Thank you for your consideration.


  17. MsE

    MsE New Member


    Thanks for the info, deirdre2012, but California is too far away for me.