When I was diagnosed with POTS and IST and Fibromyalgia I knew that there was something causing all of this misery. And I was right! Ll of my research brought me to a POTS diagnosis and when my neurologist told me that I had nerve damage and that if we could find that cause of the nerve damage that healing is possible, I just had to keep looking. I read in December some articles about migraines I think and they somehow lead me to one cause of migraines which is MTHFR(METHYLENETETRAHYDROFOLATE REDUCTASE ) mutations. MTHFR mutations are fairly common. Around 40% of the population have this mutation. I am not a medical person so I will add links to information instead of trying to expalin it all but it amounts to my not being able to use folic acid and other B vitamins. I have what is called COMPOUND HETEROZYGOUS MTHFR mutations( ONE COPY OF THE C677T MUTATION AND ONE
COPY OF THE A1298C MUTATION) If you have CFS or Fibromyalgia or migraines among other issues you should probably be tested for this mutation. The test is a simple blood test (DNA test) and it took a couple weeks to get the results for me. So what to do about this? I avoid folic acid and take methylfolate instead. Along with B12,active B6 and some other supplements. In essence I think that these mutations have caused my nerve damage, pain and other issues. I have started to take my supplements (a month so far) and already I can feel a difference. I have much less achy pain overall. My neuropathy is not much better yet but I am still on very low doses because if I try to raise the dose too fast I feel very ill. This may be caused by a heavy metal burden which I am trying to get tested for. I am hopeful for some healing but I realize that i have had this genetic problem for my whole life so there might also be permanent damage.
If you want to research this for yourself there are a couple websites that are great:

I will try to add more information as I learn but my brain fog is unreal right now so if you want to learn more please do a search or check out those 2 sites.



  1. Amy
    Posted 06/15/2012 at 11:43 PM | Permalink

    Hi Rachel! I relate so much to your story and am so thankful to find your website today! I have been struggling with intense fibromyalgia for the past year and a half but getting worse. I just started treatment for MTHFR two weeks ago, too, hoping that it would help but tonight I am in ‘a world of pain’. I hope I just need to adjust something in the supplementation. How has your treatment been going? Thank you again for your blog! It was such a blessing to read!

    • ralph and me
      Posted 06/16/2012 at 12:40 AM | Permalink

      I have seen some improvements such as a big reduction in nerve pain and my sleep has improved a lot. The over all fibro aching is less too. I no longer need to take pain killers daily although i still do need muscle relaxers for my neck. I have found that I need a lot of B12 in order to function and even though i am compound heterozygous i cant really tolerate too much methylfolate. If i take too much i feel really aweful with lots of pain and my dysautonomia (POTS) is worse too. Also I have found that avoiding folic acid is helpful too. Folic acid really makes me achy.


  2. Tammy
    Posted 08/29/2012 at 4:04 PM | Permalink

    Hello to all,
    I have been reading a lot of blogs, trying to find answers to what might be wrong with me. I have suffered from muscle and bone pain for many yrs now and spend a lot of time in chiropractic offices and getting ice, heat massage, etc. I get these horrible lumps in my back, shoulders etc. that take for ever to go away. I try very hard to stay away from the narcotics that MD’s love to give out. My blood work comes back normal, althought I was tested for the MTHFR and it came back positive for one of the genes, not sure which one. My PCP said it is nothing to worry about? not sure if I am ok with this? My Vit D is critical low and I am taking 50,000iu to get it back up… I have been living with the pain and find myself at the end of my rope with what to do, it is causing many issues in my everyday life, raising children, working etc and I know my husband is tired of it, if he could only understand how tired I am of it too. any information that anyone has would be great….

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