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New and Overwhelmed
6 Replies
NewToFibroMom - March 22

I was just recently diagnosed with fibromyalgia a few weeks ago, and I'm so overwhelmed. I've been trying to find out what was wrong with me for almost 2 years. I'm only 28! Pain, fatigue and the brain fog are keeping me from living my life and taking care of my kids the way I want to. I've also suffered with headaches and migraines for years as well as IBS, depression, anxiety, the list goes on. I've tried all kinds of medication including ALL 3 that are supposed to help FMS but nothing really helps. I'm trying to change my diet, but it's so hard! To make things even more challenging, I have special needs child and I'm planning my wedding so my stress meter is about to blow a gasket. How do real people really deal with this? I feel like I'm falling apart and I don't know what to do.

Also, does anyone know much about the link between MTHFR Deficiency and FMS? I found out I have this a few years ago. I just read there could be a link today, and I'd love to learn more.


Rahiin - March 23

Hello NewToFibroMom,

I have written almost the exact same thing that you have written, plus or minus a few details lol, (not a mom or getting married). I'm 20, so I know how it feels to have this debilitating illness at such an early point in your life. The people on this site also understand your stress and hurt, so hopefully they will be able to help you a lot. All of them have more experience dealing with fibro than I do, but I wanted to write you anyways, at least to let you know that you are not alone, even though I know that many, many times it feels like you are.

Unfortuantly I have not found a medicine that helps with my fibro either, so I am in the same boat as you. However I do have some things that you can do on your own that help a bit, not entirally, if you want me to write my list of home remedies. If you do several of them then you can feel the difference =)

Congralutions on getting married, you must be so excited. People with no fibro at all get stressed out of their minds with weddings, so do not take it as a knock against yourself that you are getting stressed out.

I hope this helps and that you find relief soon. Take Care.


Fantod - March 23

MTHFR Gene Mutation

This is interesting as it mentions fibromyalgia as a possible outcome of this deficiency. Genetic testing is needed to determine if you have the problem. Also, I was told that Canadians have a higher incidence of this mutation. I originally posted this information in 2009.

What is it?
The gene MTHFR (Methylenetetrahydofolate Reductase) encodes the protein MTHFR. Its job is to convert one form of folate (5,10-Methylenetetrahydofolate) to another form of folate (5-Methyltetrahydrofolate). 5-Methyltetrahydrofolate is used to convert Homocysteine (a "bad" amino acid) to Methionine (a "good" amino acid). Therefore, if MTHFR is not doing its job as well, homocysteine will not be converted to Methionine and will be elevated in plasma. Elevated Homocysteine has been associated with a variety of multi-factorial diseases.

Essentially what this means is that the genes that instruct MTHFR to convert homocysteine to Methionine are mutated and may not be capable of doing this important function. MTHFR is an enzyme that converts Homocysteine to an essential amino acid (Methionine). When the genes are mutated you may be lacking this enzyme. Your Homocysteine levels can possibly climb making the blood clot. Some doctors don't check for the MTHFR mutations and rely only on homocysteine levels. This isn't as reliable as testing for the mutations, because Homocysteine levels fluctuate (if you catch your level on a normal day, you may go undiagnosed).

What Type Do I Have?
With MTHFR, there are two different genes identified for this mutation, and it's possible to be "heterozygous," "compound heterozygous," or "homozygous." The MTHFR gene mutation has varying degrees of possible implications. The order of potential severity from most to least is:
1. C677T & C677T (Two C Copies - C677T Homozygous)
2. C677T & A1298C (One Copy of Each The C & A - Compound Heterozygous)
3. C677T (One C Copy - C677T Heterozygous)
4. A1298C & A1298C (Two A Copies - A1298C Homozygous)
5. A1298C (One A Copy - A1298C Heterozygous)

The MTHFR mutation is fairly common in the general population. Approximately 44% of the population is heterozygous and another approximate 12% are homozygous for the MTHFR mutation. Compound heterozygous and homozygous MTHFR have the highest incidences of being linked to implantation failure, late term miscarriages, specific birth defects and overall vascular health. Whichever type of MTHFR you have, it should not be discounted, particularly if there is a personal or family history of any such incidences.

What Are the Implications?
Any and all of the mutations can affect homocysteine levels, but there is much dispute as to whether elevated homocysteine levels are actually needed in order for MTHFR to cause medical complications. Many other MTHFR patients have normal homocysteine levels; yet have had implantation problems, m/c(s), and/or stillbirth(s) due to clotting problems. So it is important to find out your Homocysteine levels (although again, normal doesn't necessarily mean all is well). This is a serious field and MTHFR is a serious condition, so consulting an expert is wise.

Research shows that high homocysteine levels and/or those with the mutation show a higher propensity for thrombosis (blood clots), arteriosclerosis (hardening of arteries), Alzheimer's, stroke, heart attack, Fibromyalgia, migraines (especially with "Aura" migraines), osteoporotic fractures, bone marrow disorders and for those of child bearing years, it has found to be connected to higher incidences of down's syndrome, spina bifida, other neural tube defects, trisomy, miscarriage, stillbirth, implantation failure, placental abruption, preeclampsia, higher incidences of autism, amongst others. Additionally, if you test positive you may want to have your parents, siblings, and any children you may already have tested, as well. There are a few positives to this disorder. Because folate is necessary for cellular division, there is support that shows having this disorder can actually help keep certain types of cancer cells from multiplying as rapidly, so there are some benefits from having this mutation.

Many doctors prescribe Folgard, which is a prescription vitamin supplement containing high levels of folic acid, B12 and B6. These vitamins are what the body essentially needs to convert Homocysteine to Methionine. To put this into perspective, the average multivitamin contains 400 mcgs , most prenatals have 800mcgs of Folic Acid (200% of the normal daily value). Those that are compound heterozygous and those that are homozygous for the mutation are recommended taking 5 mgs. of Folic Acid/B vitamins (12 times the average multi-vitamin and 6 times more than prenatals). It is also recommended to begin taking a low dose (LD) aspirin (81 mgs) once a day, every day, for the rest of your life.


January - March 23

I have to get some sleep. But I had to comment and say thanks for introducing this topic. I never heard about MTHFR, but when I googled it earlier today, Fantod's post from 09 came up! So, Fantod, thanks for reposting all that. This is really interesting, and I hope lots of people read this.

I had high homocysteine a few years back, and the Harvard/Yale educated "doctor" never said a word about this genetic problem! The homocysteine normalized with my gluten free diet - so I quit worrying. But maybe I need to follow up on this - like the, ahem, "DOCTOR," (who now charges an annual retainer fee for her excellent service) should have done. All she did was try to put me on Lipitor and then have a hissy when I said "no."

NewToFibroMom -- I can't do the 3 "accepted" fibro meds either - but I've got a regimen that works fine. My gluten free diet, a lot of supplements for sleep, energy and brain health, and some older prescription meds that I take at a low dose - for pain and sleep. I had a horrible time with Cymbalta - felt like a zombie, gained 40 lbs, and it put me into beginning diabetes, all of which resolved when I quit it. None of those side effects can be healthy!

I also use melatonin to help with sleep; SAM-e to help with pain; and a lot of other supplements like DHEA, Ubiquinol, gingko, Huperzine. Please don't take any of these without talking to your doctor though, as they can cause problems in certain people, depending on your body. I have no idea how they interact if you have the genetic problem you mentioned, but I think I need to find out! I am thinking some of the supplements I take have methionine in them (have to check the bottles) and maybe they are helping because I have low methionine levels… hm.

Thanks for this info!

Rahlin - I've read your posts before, I know you've had a rough time - and I'm so sorry you haven't found any meds yet that help. I would like to know what you are using as home remedies for relief of symptoms?


January - March 23

Fantod - and anyone else? Have any ideas about Serrapeptase and how it might tie in to MTHFR deficiency? I'm thinking it might, because it's supposed to prevent plaque buildup on arteries - and break down fibrin. Homocysteine indicates inflammation in the body, and Serrapeptase is a "natural" anti-inflammatory.

I took some today because my shoulder was killing me, and tonight my range of motion seems much better.


NewToFibroMom - March 28

Thank you for all the feedback. I am going to be writing questions down to ask my doctor when I see him again. The one thing I am very happy with is having a doctor who listens. I have just never thought to bring this up with him until recently. I've already started taking more B vitamins and folic acid. I found out I had MTHFR when I was pregnant with my daughter and was on Folgard, but never knew I was supposed to continue taking it after she was born, and was pretty much told to stay of "the pill" to avoid clots and I'd be fine. I'm still not sure how much of a role this has on my fibromyalgia, but it's definitely worth looking into!

Thanks for the support, and Rahiin I would love to hear of some home remedies that have helped for you as well as from anyone else who has any ideas.


January - March 28

NewtoFibroMom - you're so lucky to have a doctor who really works with you. Please share any further information you learn about MTHFR! I'd never heard of it before, but, after reading up on it, I'll bet it is lurking in my family! So thank you for educating us. Of course, our amazing Fantod had written something on it a couple years ago, but I didn't know that until i googled it.

I think it's people like this community - who are really motivated to research about this disease because we HAVE it - that will come up with some valuable insights and maybe something that points to a cure. There are so many odd diseases with symptoms that overlap fibro, there must be a connection with at least some of them. Hopefully a few MDs and researchers read this site too.

Hope you're doing well, and thanks again for introducing this information.



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