For the past year and a half I’ve been battling Fibromyalgia…and (for the most part) winning. There are a few bad days but mostly good days, especially in the past six months – nothing like what I experienced at the onset. Fibromyalgia is a chronic illness that isn’t well-known in the general public, despite the fact that 10 million + people in the US suffer with it, and most people have no idea what I’m talking about when I tell them what I have. We’ve all seen the commercials about taking certain medications for “undiagnosed chronic pain” which make it seem like its some random umbrella diagnosis for “we have no idea what’s wrong with you.” And quite honestly, for many months, with many doctors that is how I felt.
Fibromyalgia is a diagnosis of exclusion. Doctors test you for every possible auto-immune disorder (lupus, rheumatoid arthritis, Crohn’s disease, celiac disease, the list goes on.) When the tests come back negative for these they often determine its Fibromyalgia. Occasionally people with Fibromyalgia also have other auto-immune issues but thats not always the case.
According to my doctors my symptoms seemed extra puzzling because I didn’t have “typical Fibromyalgia symptoms” – my symptoms live mainly on the left side of my body with the exception of my hands and feet. I wasn’t experiencing the extreme pain that Lady Gaga has, as documented in her film Five Foot Two. I did however check most of the boxes I found online – tingling in hands and feet, leg cramping, pinpoints of pain, anxiety, IBS, and yes, fatigue, crippling fatigue where I literally crawled into bed at 4pm or 5pm and was out for the night.
Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Fibromyalgia involves alterations in the function of your nervous system and how your brain processes pain. It also causes a response in your hormone and immune systems that can lead to many different changes, including neuroinflammation or inflammation in the tissues in your nervous system. –The Mighty
No one really knows what causes Fibromyalgia and traditional medical doctors are somewhat at a loss on how to treat it. So here I was, in pain, fatigued, utterly confused and completely on my own on how to get better. I knew the cause of my Fibromyalgia onset, I had experienced deep emotional trauma earlier that year after suddenly losing my father to sarcoma of the liver. This happened right after I went through a stress induced bout of Shingles and a couple of anxiety attacks. So the stage was already set for my body to give way when my father passed away. Its no wonder the Fibromyalgia appeared. The mind body connection is strong and when we are physically weak and our mental stage is challenged, all hell can break lose.
So what do you do once you have a chronic illness? One that no one seems to know anything about. You dig. I read everything, researched everything and I found Dr. Bruce Gillis of EpicGenetics who is running a clinical trial for a vaccine for Fibromyalgia. Through his research he developed a test to determine if you truly do have Fibromyalgia. So I bought the kit and did the test and, yep, I definitely do have it. Now, there’s doctors out there who are very skeptical about this test, but its because there isn’t an army of pharma reps knocking on their doors educating them about it. Nor is it being widely talked about in medical circles. Not one of the doctors I’ve seen in the past year and half have even heard of this test. But that doesn’t make it any less real, or its results less accurate.
In my research I came across Dr. Daniel Wallace, the head of rheumatology at Cedars Sinai who wrote the book, All About Fibromyalgia. It was his office at Attune Health where I found the first true medical assistance. The focus of their practice is auto-immune disorders. Fibromylagia is classified as a chronic illness or syndrome. It is not an auto-immune disorder but it displays auto-immune type symptoms. My rheumatologist and neurologist are both in this office and and have been a tremendous resource and place to go for check-ins, lab work and progress reports. But in my case, my pain is directly related to my gut health and it was the nutritionist in their office, Lee Bell, who solved the puzzle for me.
I was already doing the Whole 30 diet, to drop ten pounds quickly so that I could lower my blood pressure. As a side effect, I noticed my nerve pain and gut pain had significantly decreased by eliminating certain foods from my diet. Lee had me stay on the Whole 30 diet but added a 30 day collagen-based liver detox cleanse to the program. Despite my nerve pain I felt glowing and vibrant.
The two pin points of pain in my lower abdomen did not diminish however, despite all of my diet changes. My then internist sent me to get tested for SIBO, small intestinal bacterial overgrowth. Eew, right? I cannot stress enough the importance of gut health. Every one of us has our own unique gut biome, made up of all kinds of gut flora, good and bad, And when your gut biome is off, all kinds of things can go wrong like SIBO and leaky gut. Also your gut health affects how your body produces seratonin, which is a very important neurotransmitter in the body. You need it to sleep and to have a sense of calm and well being. Do not think that taking a simple probiotic is going to fix this issue. Your gut biome is your own. You have to do testing to find out whats going on in there and then work at it to adjust your gut biome to its healthiest.
After two rounds of treatment for SIBO I was already on track to feeling better. By this time Lee Bell had sent me to see a functional medicine doctor who, through extensive lab work determined a few key things, I was B12 and Vitamin D deficient, I had high levels of Copper in my blood (which was causing inflammation and pain) and I wasn’t methylating properly. For the past year I’ve been taking an assortment of supplements (Zinc, Magnesium, L-Glutamine, Vitamin D, Vitamin B-12, Folate, Curcumin and Omega 3) , monitored by both my functional medicine doctor and my internist, and having my blood checked regularly. I’m happy to say my pain is at a minimum and my fatigue is pretty much gone. As for the periodic leg cramps and pain points…I see a neuromuscular therapist who works it out of those tight muscles. Once the acute pain has been addressed I then continue the pain management with physical therapy when needed. Also the Curcumin really helps my joint pain.
It appears that Fibromyalgia is caused by nutrient deficiencies (vitamins, minerals, essential fatty acids), plus exposure to environmental toxins (heavy metals, endocrine-disrupting chemicals in our foods, water supply, air, cleaning products and health and beauty aids) in individuals whose genetic inheritance increases their needs for certain nutrients and/or decreases their ability to effectively clear toxins. – AlgaeCal
My current challenge is my diet. Whole 30 is very restrictive and maintaining it ongoing just seems…well I can do it, but I really miss pizza. I’ve been working with nutritionist Elissa Goodman and my gastroenterologist to figure out how to slowly expand my diet. A lot of it is trial and error, I just see how my body reacts. I’m trying to add some new menu items in my diet. Pamela Salzman’s recipes are also hugely helpful and its been suggested I get some of Gwyneth’s cookbooks as well. Kathleen Standafer also has some great recipes and diet suggestions in her book Fibromyalgia Freedom, which is the best summary on Fibromyalgia I’ve read yet.
What’s the most important thing I did for myself this past year? I decreased my work load and lowered my stress. I go to bed on time. I focus all of my energy in the evenings and on the weekends on my family. I’m not working at all hours of the night like I used to. As a Type A, go-getter, 110% producer and work-aholic this has been incredibly hard for me. But its working. I’m trying to start exercising regularly too. Working your muscles, forcing your mitochondria to regenerate, producing endorphins and serotonin, releasing stress…these are all things that improve your health.
I also have an arsenal of “weapons” that I can use – heating pads, massage, an incredible neuromuscular therapist and physical therapist, my supplement routine and functional medicine doctor, CBD oil and my bed. Sleep is the best medicine.
I’m lucky though – I live in LA, a city rich with resources and “alternative” practitioners and healers. CBD is legal here. I can afford to go out of network for medical help. I am surrounded by local produce, farmers markets and restaurants that offer every type of healthy diet menu possible. I recognize this good fortune. So what about people who aren’t in my situation? I think about that a lot. How does someone who can’t work from home, buy organic or afford supplements improve with Fibromyalgia? What life changes can they make? Especially those who can’t sleep as a result of Fibromyalgia. I’m hopeful Dr. Bruce Gillis will get his vaccine approved and there will be a cure.
In the meantime, the good news for anyone that’s reading this post and suffering with Fibromyalgia is that I’ve talked to people who have cured themselves of it. Since Fibromyalgia is highly individualized I am not going to share with you how they did it because their solution is not my solution or your solution. I share with you my own story in the hopes that anything I’ve learned can help you. I, myself, am happy to report that I’m feeling 80% better than I did a year ago.
I’ve done a lot of research and reading this past year. To save you time, I’ve linked to a number of great resources in the post above but here are a few more. Plus some words of advice.
- Get properly diagnosed. Take Dr. Gillis’ FM test. Buy the kit and take it to your doctors office. They will send it in for you.
- Adjust your diet. Try Whole 30 if you’re hurting. You may be surprised that eliminating dairy, grains and legumes from your diet decreases your pain intensity for the better.
- Get more sleep. Take melatonin if you need to.
- Lower your stress.
- Find health practitioners that will actually believe you and help you – they may not be traditional doctors.
- Read Fibromyalgia Freedom. This is THE BEST book I’ve read on Fibromyalgia yet. Get it!
- Find a good massage therapist – preferably someone with sports therapy training who can really dig in and release tight muscles.
- Find a good physical therapist – preferably someone with neuromuscular therapy training who can also release deep tissue pain.
- DO NOT take supplements, especially high dosages without consulting with your doctor. Make sure you’re doing regular blood tests and being monitored.
- Join The Mighty and become part of a support group plus get information about your specific ailment directly in your in box.
- Subscribe to Dr. Axe’s newsletter.
- Follow the National Fibromyalgia Association
- Read this article on The Mighty about Fibromyalgia
- Read my post about IBS and IBS-D
- Read this article about L-Glutamine
- Read this article about SIBO and B12 Deficiency
- The best supplements you can buy are Thorne and Designs for Health.
- Here’s an article about recommended doses of Magnesium.
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