Vitamin B12 Deficiency..

Discussion in 'Fibromyalgia Main Forum' started by Amee332003, Sep 29, 2005.

  1. Amee332003

    Amee332003 New Member

    Hi! This is my 1st time on this messgage board..I love this site... it has helped just reading other peoples stories!!!! I feel like I'm going crazy!! I have been diagnosed with CFS, but have been to Rheumy twice now..he said the blood work came back fine...but I am deficient in Vitamin B12...which he said will cause tingling in the legs, feet, and hands, also tiredness, and brain fog. I really think I have FM...I hurt everywhere...I feel like I have been run over by a truck several times...My legs feel like they weigh 300lbs each...I hurt... The Dr. said we had to get the Vitamin B12 in order before he would even think about me having FM. My sister and aunt have FM..My sister says I sound just like her (as far as how I feel)..
    Does anyone have any advice for me???? Please help!!
  2. MKlady

    MKlady New Member

    My lab tests show I have practically none and my doctor says it's no wonder I have brain fog! She wants me to have shots - but she's three hours away so I have to find someone here who can do them for me...In the meantime, I take a variety of things including Neuro B-12 (sold by ProHealth) which crosses the blood brain barrier. Good luck and let me know what they recommend for you!
    [This Message was Edited on 09/29/2005]
  3. Amee332003

    Amee332003 New Member

    Thank you mklady for your reply. I started the B12 shots today. Should get another one a month from now and contiune for several months. Then the Dr. will prescribe a perscription strength B12. Then we will go from there. Should take several months for them to start working. I also take Cymbalta 60mg, Ultram 50mg 4 x day, Zanaflex 4mg x day, and Zelnorm. Never thought I would be taking this much medicine!!
    Do you have any problems explaining to family members..even your own husband..(if you are married)..
    Hope you feel better!!
  4. Pianowoman

    Pianowoman New Member

    If it is not convenient to get to your Doc. regularly for shots have him/her or a clinic nurse teach you how give them to yourself. I do it once or twice a week and it is helping.

    Amee, if you hurt everywhere, it sounds to me like you need something for your pain regardless of what your B12 levels are.

    Good Luck

  5. Amee332003

    Amee332003 New Member

    Thanks Kathy...I am taking Ultram (Tramdol) 50mg 4 x day and Zanaflex 4mg 2x day...and Xanax as does help..but I still feel achy...
  6. rileyearl

    rileyearl New Member

    Hi Amee,

    It would be great if your doc was right, but...?


    Another method of getting B12 is to get the sublingual tablets that disolve under your tongue. The B12 goes into your blood stream that way. I'm sure it's not as effective as shots, but maybe in addition to?

    The B12 can't make things any worse. It's just that if you wait to get the B12 levels up, there will be one more deficiency, then one more, and so on. I've just had a complete blood work done and am deficient in most hormones, immunoglobin, nk cells, and more I can't remember.

    Can you go to your sister's doc? I'd be too impatient to wait.

    I look forward to your posts! Take care!

  7. rbecca47

    rbecca47 New Member

    I was dz with a b-12 deficiency, a year before dz with fms. I was severely irom deficient, had anmimia, had to have 2-4 units of blood a month for a year, until i started the b-12 shots. now my blood count is good. but my doc, said i have fms. and i asked if had any thing to do with the b-12 deficiency. and she said no that she has never heard of that before. i swear by the b-12 shots,over recieving blood. but as far as the fms goes i would give any thing not to have. i know the b-12 if supposed raise your energy level. take my word for it, doesn't do that for me at all. we are all diferent and some treatments will help some and not others. I do recommend getting a good doc. one that knows about fm. and so sorry you have this DD.
  8. JimB

    JimB New Member

    ...and type in B12 in the Search space.(or what ever).

    Excerpts from Dr. Cheney's Report:

    Dr. Paul Cheney’s
    Treatment pyramid for Chronic Fatigue Syndrome (CFIDS)
    by Dr. Paul Cheney

    - Magnesium is an important element. They are magnesium depleted.

    - Extra vitamin E because they’re vitamin E depleted.

    In chronic fatigue syndrome patients,
    two thirds of them have no detectable B-12 in their brains, even though their blood levels are normal. We use high doses. We prefer hydroxycobalamin, and perhaps methylcobalamint.
    Cyanocobalamin is the normal B12.
    Methylcobalamin** (neuro-B12) is form of B12 that gets PAST the blood brain-barrier to the brain.

    ** You can buy this in sublingual(absorbed under the tongue)
  9. Amee332003

    Amee332003 New Member

    Thanks you Francie for your info...Is there such a thing as taking too much B12? Also do you have any idea how after getting a B12 shot that the extra energy will kick in?
    As far as going to my Sisters' Dr..she isn't currently seeing one..has been through several...but not understanding..told her that it wasn't near as bad as she thought!!! She is able to meds from her Family Dr.

    Thank you Becca and Jim for your information. This website is really helpful..

    Try to have a good weekend!!!
  10. Amee332003

    Amee332003 New Member

  11. Pianowoman

    Pianowoman New Member

    Hi Amee
    My Doctor says that there really is no limit as to how much you can take. I know that some are taking very large amounts. Our bodies do not absorb it well so we likely need more.

    As to how long it takes for the energy to kick in - in my experience you can feel it either the day of the injection or sometimes the next day. It may depend on what time of day you have the injection.

    Good Luck

  12. Amee332003

    Amee332003 New Member

    Hi Kathy...Thanks for the advice...
    I still haven't felt anymore energy from my B12 shot...I got it Thurs. morning..and it's Sat.??? Oh well..
    I'm not due to go back to the Rhuemy for another month...I'll just have to wait and see.

    Thanks again..
  13. goodma

    goodma New Member

    I am currently taking B12 every day. I have to go back soon to have my blood checked to see if my level is up. I also have Hypothyroidism and take synthroid 88 mcg. per day. I have osteo arthritis, extreme pms and GAD so I'm on all kinds of medication. I take the FMS vitamins and they have given me so much energy. I've been taking them for about 5 years. My Endocrinologist said that B12 deficiency can cause nerve damage so make sure you take the medication.

    I take synthroid, celebrex, buspar and have been taking zoloft since I was 29 and I'm 45 now. I'll need to take zoloft the rest of my life. I was married for 22 years and I did everything, cooked, cleaned, raised 2 wonderful children, did all the yardwork, was head of household even though I had a spouse and I worked 40-50 hours per week outside the home. Oh I forgot to mention that I have 2 dogs and I was the sole caregiver for them as well. I figured that getting FMS was the lords way of slowing me down and making me smell the flowers. I could never convince my exhusband that I had a chronic illness, he expected me to continue with the role he had planned for me. My health has increased since I got rid of the stress of him everyday. Don't get me wrong I still have good days and bad days, but I don't have to deal with him. Soon my son will be 18 and child support will stop then I don't ever have to talk to him unless I want to, which I won't.

    I'm starting a new life with a wonderful man who researched FMS on the internet to discuss it with me and said it sounds like a horrible illness, I guess it is but it's not terminal so I'm really very lucky compared to most.

    Hope you feel better soon.

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