Living with Fibromyalgia Symptoms
My battle with Fibromyalgia symptoms started before much was even known about it. My Fibromyalgia symptoms list seemed to grow rapidly starting in my early teens. The first set of symptoms was extreme fatigue and a heavy achy feeling in my body that would come on in a wave over the course of a week and gradually get worse until I just couldn’t seem to get up. I would have a couple days in bed sleeping and the wave of pain and exhaustion would slowly abate over the next two weeks. The doctor was pretty sure I had mononucleosis but after tests came back negative it was determined to be hormones and stress. At age 18 I got pregnant with my first child. I was active, healthy and had lots of energy. I went into premature labor with him at 24 weeks and my little miracle was born 3 months early at 2.5 lbs. He spent 9 months in the hospital in NICU on oxygen and was chosen as one of the babies to receive Exosurf Neonatal (a synthetic lung surfactant) at the time an experimental drug to help his lungs develop. It worked, although back then he was only given one dose. Now all babies born premature are given this drug daily until their little lungs develop. I credit it and a ton of prayer to his survival. He has had no health issues and is now a 250 lb 30+ year old man.
A year later I got pregnant with baby #2, again a healthy pregnancy. And again went into premature labor at 31 weeks and my second son was born at 5.1 lbs, had a hospital stay of 1 month and is also a healthy thriving adult. I was told at this time, I really shouldn’t attempt another pregnancy as I had “lucked out” and went in to have my tubes tied. Was sent home because my pre-surgery test showed me as, guess what? Yes pregnant. Again, I was healthy and was having a good pregnancy, went in for my 20 week checkup and was already 3 cm dilated. So, without further ado was sent directly to the hospital where I was put on bed rest for 12 weeks, with an IV of drugs to stop the labor.
My stay in the hospital lasted until they deemed it safe for me to go home (till 32 weeks gestation). From lack of activity, I had ballooned up from 128 lbs to 210 lbs. Two weeks later I went into full labor and had my daughter. She was 6 lbs 1 oz. Healthy and hale with no medical issues. They tied my tubes before I left the hospital.
Next began my real battle with Fibromyalgia. Although, I had no symptoms of it at all during my pregnancies it came-on hard, off-and-on over the next few years, till at age 26 I woke up in so much pain I couldn’t even walk. My arms from the elbow down had to be wrapped in tension bandages to even function and my feet and legs from the knees down throbbed like all my nerves had been burnt. I given a preliminary diagnoses of MS (and told that I would probably be in a wheelchair by age 40), which scared the life out of me and my family. My parents stepped in and literally carried me to an acupuncture therapist and a natural path that put me on an elimination diet to see if anything I was eating was triggering the pain.
ACUPUNCTURE -The acupuncture treatments were not typical. The couple that worked on me were retired brain surgeons that used acupuncture instead of anesthetic when preforming surgery. I was in good hands. It took 13 treatments (3 per week) for me to feel the energy flow freely through my whole body. My system was so depleted that it took the first 4 treatments for me to feel even feel the first zip of energy go from my hand up to my elbow. I left that last appointment, where the energy had finally completed its full body circuit, bawling my eyes out in absolute euphoria. I was literally high from being pain free for the first time in months.
DIET -Meanwhile, it became clear through the elimination diet that yes certain foods definitely contributed to the pain. My allergy tests showed Yeast, Wheat, Mustard to be my biggest issues. I have been mostly keto as a result ever since. I slip every once in a while but it just sets me back and I ache from head to toe for a couple of days until it clears my system. It also induces constipation, bloating, and the joints in my hands and arms will throb and ache, so not worth the slip up, but I’m a foodie and sometimes I just want a sandwich or a cinnamon bun. Allergy season I have to stick to my diet religiously or my body gets overwhelmed and I begin the cycle again. I take raw local honey (1/2 tsp) 2x a day starting the month prior, and it makes a HUGE difference. Local raw honey has all the pollen broken down by the bees into a form that your body will produce antihistamines naturally without the use of allergy medication. My one exception to this is in the early spring when I have a month of nasty allergies to snow mold. At that time and for a short period only I also seem to have allergies to carrots and bananas, but they go away once the allergies dissipate.
Other Pain Triggers: Aspartame, even one little sip of diet pop or anything with this artificial sweetener will trigger an attack. Within 20 minutes of ingesting my body will be vibrating with pain. Red wine unless its organic is also a trigger. I found out I’m allergic to yeast accelerators which are present in most wine production as well as most commercial breads. I seem OK on homemade sourdough if, I only have it as an occasional thing (2x a year) although it does bloat me up and make me extremely tired.
THE REAL CULPRIT CAUSING MY FIBROMYALGIA
Through DNA testing we also found out that my family has a gene mutation called MTHFR. Passed down from both sides of the family which means I also passed this gene to all of my children. This is probably responsible for ALL my fibromyalgia symptoms and the premature birth of my children. In medical terms MTHFR Methylene tetrahydrofolate reductase is the rate-limiting enzyme in the methyl cycle and is encoded in the MTHFR gene. In plain everyday English MTHFR is the gene responsible for making an enzyme of the same name. This enzyme plays a role in processing amino acids, and converting a type of folate into a different form 5-methyltetrahydrofolate. This primary folate is found in your blood and converts amino acids into another amino acid called methionine. Methionine makes proteins and many other important compounds. Whew!
Here is where MTHFR gets tricky. MTHFR affects everyone differently. You may have one set of symptoms and your bothers or sisters with the same mutation will have completely different ones. Gene variants are normal, in North America more people have one or two variants of the MTHFR gene alone, than those who don’t. Variants in genes are responsible for your different eye color, hair color, blood type etc. This also explains why it affects us each differently as well.
Major Symptoms of MTHFR
- Autoimmune disease (including Fibromyalgia)and thyroid issues
- Cardiovascular disease
- Chronic Fatigue
- Colon Cancer
- Digestive issues (IBS irritable bowel syndrome)
- Hormonal Issues (including Polycystic Ovary Syndrome)
MTHFR produces an enzyme responsible for converting folate into a form that plays a role in mood regulating neurotransmitter production . There is also a correlation between MTHFR and anemia, which greatly affects mood and Chronic Fatigue.
- Higher Risk for Miscarriages, Premature birth, Preeclampsia, or a baby born with birth defects such as spina bifida. The CDC now urges all women of reproductive age who want to get pregnant to consume 400 mg of folic acid every day. It might not be enough though to prevent all defects. Get tested to find out which strains of MTHFR you may have as it determines the amount of folate you need. For example the CDC recommends 4,000 mg a day for 1 month prior and for the first 3 months for those who have already had a previous problem with their pregnancy due to this gene.
Despite my entire family carrying this gene, (both sides in fact) I am the only female sibling to have premature babies. There have been miscarriages, however they were all followed by a healthy pregnancy. Not that this makes a miscarriage any less traumatic.
I urge you to get tested if any of the symptoms listed above run in your family. There is help! Although you may still have a lifetime struggle with some symptoms, knowing the cause can really help you find a balance that brings great relief and you can address the symptoms so that you can live a happy healthy and pain free life.
What Works for Me
Optimized Folate – (Vitamin B9) I take 1 mg every 3 to 4 days. I do not take it daily because in my case too much gives me the exact same symptoms as too little. I know I’m getting low when I start getting absent-minded, can’t concentrate, have a song stuck in my head that won’t quit and my eyesight even get a little fuzzy. When I take my optimized folate I do swell up in my hands for a day, but the other symptoms all go away. Deplin is a drug version of this product that is given to people with ADHD usually in a 15mg daily dose. I did take this drug for 3 days during a severe flareup and went to bed. Although, I felt high as a kite it did clear up my symptoms tremendously. I was taking 1 mg everyday following that and felt better for a bout 2 months, then the symptoms came back. So I stopped taking the optimized folate until they subsided and now follow my dosage plan as it works perfectly for me. Do not be afraid to work with your healthcare provider to find your ideal amount. This is a battle worth fighting. The right dose can make all the difference in the world.
Folic Acid is found in many vitamins, supplements and food. If your body does not convert it properly that is when the optimized folate version may be the best option. Additionally, it very difficult to get the recommended amount by diet alone. You need a lot. Natural food folate is found in dark green leafy vegetables, fruits and fruit juices, beans, nuts, peas, seafood, dairy, poultry, meat, and grains. I eat all these and still need to take a supplement. Spinach, liver, asparagus and brussel sprouts have the most… but in that food group I only like spinach and asparagus even though it makes my pee stinky. So Ill just take my supplements.
I also began taking the additional supplements listed below to help with perimenopause symptoms. They have given me relief with my fibromyalgia protocol as well. I believe this is because I am nurturing my nervous system with these supplements. I have added an explanation of their properties with each item. I hope you find a combination that works for you!
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There is now a lot of information available to help you on your journey. A few tools that can help you determine your unique needs are:
Although, I still get the occasional flare up of symptoms. I have managed through diet, supplements, and reading my body to keep the flareups short-lived and under control. My mind set of “I’m too busy living to be sick” has also helped me on my journey.
MY DAILY / WEEKLY PROTOCOL
Of all the symptoms the pain in my arms and legs are probably the most debilitating. I up my hydration, take Vit D, Vit C, optimized folate 1 mg every 3 days, eat according to my dietary needs and stand on my vibration platform which gets the blood flowing and helps me to get a good sleep. Migraines are a secondary issue. I get Botox injections for those in my forehead, neck and shoulders. Even if I get the aura I follow the above protocol add 1 aspirin tablet and have a 15-minute nap and I’m usually good to go.
This is the short version of my journey, but I really hope this information has been helpful. Please feel free to comment, follow me on Facebook, Instagram or Pinterest or reach out with your story or any questions. I’d love to hear from you. Elaine
Vibration Platforms On Amazon
My personal vibration platform is the Hovert 3D by Lifepro
CoQ10 is an antioxidant and helps reduce the frequency of headaches &migraines, relieves muscle pain, and support cardiovascular health.CoQ10 by Life Extension
Vitamin D is an anti-inflammatory, antioxidant, and has neuroprotective properties, supports immune health, muscle function and brain cell activity. High Dose Vitamin D
Optimized Folate (Vit B9)
Helps your body form RNA and DNA that tell your cells what to do, helps the gene MTHFR enzyme to do its job and is an essential supplement for those with a MTHFR gene mutation, reduces risk of certain types of cancers, helps breakdown homocysteine a protein that increases risk of cardiovascular disease. Life Extension Optimized Folate
Turmeric is a plant in the ginger family. Turmeric can be consumed fresh, boiled or dried. Benefits include joint support, brain health, has anti-inflammatory properties and supports heart health. Life Extension Turmeric Capsules
Relieves Stress and Anxiety, Reduces Inflammation, Helps Improve Memory and Focus, Can help regulate the Menstrual Cycle, Acts as a Sexual Stimulant, Contributes to Heart Health, Helps to Combat Vaginal Infections. Ashwagandha on Amazon
Is a component in the production of the neurotransmitters’ norepinephrine and dopamine, which are essential for the proper functioning of the brain and nervous system. It’s my version of the happy pill Prozac. L-Phenyalanine on Amazon
My favourite Hydrator Supplement – Vegan Hydrator – I put a bit in my morning water to keep my Vit C up and my hydration optimized.
I’d love to hear from you! If you have any comments or would like to share your story please feel free to reach out! Comments can be made on this page or feel free to follow me on Facebook, Instagram, Twitter and Pinterest.