It is shocking and disparaging that so many doctors and providers still deny the existence of fibromyalgia. So many patients suffering real, debilitating pain and fatigue are told it’s all in their head and that they need psychological help. While I agree fibromyalgia patients do benefit from mental health services; that doesn’t mean that they are not suffering from a real, physical illness.
The reason that many claim that it does not exist is the lack of physiological evidence. That however is simple just not true. They have just failed to keep up-to-date on new research being published. I remember one doctor told me that he learned all he needed to learn from medical school. That means he wasn’t implementing any new medical information that had come out since he graduated medical school. This lack of continuing education for doctors is alarming since it directly impacts the care they give their patients. Patients that trust their doctors with their lives.
One doctor told me that they had only ONE seminar on fibromyalgia the entire time they were in medical school. ONE. For an illness that affects 3-6% of the entire world’s population that is alarming. To break that down, that is at least 1 in 21 women. So for every 21 women a doctor sees at least 1 will have fibromyalgia. You would think they would be scrambling to find answers for all of these patients. However, that is not the case for most. They are content to send referrals to shrinks, hand out Lyrica prescriptions, and tell people that are significant pain to exercise more. I was once told by a doctor that if I did not take Lyrica, despite the severe side effects, then there was nothing more he could do for me. It was devastating to hear that and I started to lose hope that I could ever get better.
I will say that there are some amazing doctors out there that are going the extra mile for their patients. I salute them for their efforts to continue their education and stay up-to-date on current research.
I have compiled a list of some of the new research out there that proves that fibromyalgia is a real illness and there are ways to treat it. This is not a complete list, but is just very basic snippets that will give you a general overview.
The big picture of how fibromyalgia works is still a mystery, however we have a lot of the puzzle pieces that we just need to put together to form the complete picture. For starters we know that fibromyalgia is genetic. We’ve know this for years as the illness runs in families, but researchers are now in the process of identifying genes for fibromyalgia (1).
I spoke to Dr. St. Amand and he says they hope to develop a DNA test for diagnosing fibromyalgia in the near future. There is a blood test available for fibromyalgia, the FM/a test from EpicGenetics that is 93% accurate, the same accuracy as the HIV test. There is also a genetic insight panel by Proove Biosciences. The Proove Fibromyalgia Profile delivers genetic insights and clinical recommendations for individual patients and evaluates markers in 11 genes that modulate the transmission and processing of pain in fibromyalgia.
(1) Feng J1, Zhang Z, Wu X, Mao A, Chang F, Deng X, Gao H, Ouyang C, Dery KJ, Le K, Longmate J, Marek C, St Amand RP, Krontiris TG, Shively JE. Discovery of potential new gene variants and inflammatory cytokine associations with fibromyalgia syndrome by whole exome sequencing. PLoS One. 2013 Jun 10;8(6):e65033. PMID: 23762283 https://www.ncbi.nlm.nih.gov/pubmed/23762283
Here are some interesting research studies that have recently been published that show significant differences in the bodies of fibromyalgia patients compared to the general population.
Curvature of the neck: 90% of fibromyalgia patients have a straight or reverse curvature of the neck (2). This can cause the narrowing of the spinal column which pinches the spinal cord. This could explain the neck and upper back pain and headaches experiences by most fibromyalgia patients. This may be able to be corrected with upper cranial chiropractic treatment.
(2) Katz, Robert S. and Anthony Farkasch “The straight neck in fibromyalgia.” 2013 American College of Rheumatology Meeting. San Diego, California – Poster Abstracts. http://www.fmcpaware.org/research-articles/1468-the-straight-neck-in-fibromyalgia.html
Extra sensory nerve endings: A study shows that fibromyalgia patients have extra sensory nerve endings within the blood vessels of the skin in the palms of their hands (3) (they only tested hands, however I think it might be logical to assume that we have extra nerve endings everywhere.) The extra nerve endings are a part of shunts effecting blood flow and body temperature. This would affect brain function and cause a wide variety of symptoms like muscle pain, fatigue, inflammation, and brain hyperactivity.
(3) Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive peptidergic sensory innervation of cutaneous arteriole-venule shunts (AVS) in the palmar glabrous skin of fibromyalgia patients: implications for widespread deep tissue pain and fatigue. Pain Med. 2013 Jun;14(6):895-915. PMID: 23691965 https://www.ncbi.nlm.nih.gov/pubmed/23691965 http://www.prnewswire.com/news-releases/fibromyalgia-is-not-all-in-your-head-new-research-confirms-212300711.html
Mitochondrial Dysfunction: There have been a few studies proving that fibromyalgia patients suffer from mitochondrial dysfunction (4)(5). Mitochondria are the body’s batteries that power our cells. When our mitochondria aren’t functioning properly then our body isn’t getting the energy it needs to function. Body systems start to shut down and our body slows down. This explains why fibromyalgia patients suffer such severe fatigue and have additional illnesses like thyroid disorders and adrenal fatigue. Mitochondria are ‘fed’ by ATP. ATP is created by CoQ10. Fibromyalgia patients are not producing enough ATP and CoQ10 naturally which causes the mitochondria to be starved. This can be improved by taking a large dose (200-300mg) of a high quality ubiquinol CoQ10 supplement with an alpha lipoic acid (like Vitamin E. (6)) The alpha lipoic acid is beneficial because it recycles used CoQ10 so that it can be used again.
(4) Sánchez-Domínguez B, Bullón P, Román-Malo L, Marín-Aguilar F, Alcocer-Gómez E, Carrión AM, Sánchez-Alcazar JA, Cordero MD. Oxidative stress, mitochondrial dysfunction and, inflammation common events in skin of patients with Fibromyalgia. Mitochondrion. 2015 Mar;21:69-75. PMID: 25662535 https://www.ncbi.nlm.nih.gov/pubmed/25662535
(5) Castro-Marrero J1, Cordero MD, Sáez-Francas N, Jimenez-Gutierrez C, Aguilar-Montilla FJ, Aliste L, Alegre-Martin J. Could mitochondrial dysfunction be a differentiating marker between chronic fatigue syndrome and fibromyalgia? Antioxid Redox Signal. 2013 Nov 20;19(15):1855-60. doi: 10.1089/ars.2013.5346. Epub 2013 May 29. PMID: 23600892 https://www.ncbi.nlm.nih.gov/pubmed/23600892
Small Fiber Polyneuropathy (SFPN): “Recent work has demonstrated that approximately 50% of patients diagnosed with fibromyalgia have damage to their small unmyelinated nerve fibers.(7)” This can cause sensory and autonomic symptoms in fibromyalgia patients such as chronic widespread pain and multi-system syndromes (8). The good news is that SFPN can be cured in most cases. They know many of the underlying causes and if they are addressed you can get better. If you experience chronic widespread pain that has a burning sensation, then getting tested might be a good option for you.
(7) Todd D. Levine (corresponding author) and David S. Saperstein. Routine use of punch biopsy to diagnose small fiber neuropathy in fibromyalgia patients. Clin Rheumatol. 2015; 34(3): 413–417. Published online 2014 Dec 24. doi: 10.1007/s10067-014-2850-5 PMCID: PMC4348533 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/
(8) Anne Louise Oaklander, Heather Downs, Zeva Daniela Herzog, and Max Klein. Small-fiber polyneuropathy (SFPN), a common underlying diagnosis in syndromes involving unexplained chronic pain and multi-system symptoms. Mol Pain. 2014; 10(Suppl 1): O12. Published online 2014 Dec 15. doi: 10.1186/1744-8069-10-S1-O12. PMCID: PMC4304354 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4304354/
Central Nervous System Disorder: Fibromyalgia patients feel pain twice as much as the regular person and feel pain differently. This was verified in a recent study using fMRIs to study fibromyalgia brains vs non- fibromyalgia brains (9). When pressure was applied to the participant’s thumbs the fibromyalgia patients brains lit up more easily (less pressure) and different parts of the brain were activated compared to non- fibromyalgia participants. The pressure applied to the non- fibromyalgia participants to get a similar pain response was twice that of fibromyalgia patients. This is why fibromyalgia patients experience allodynia (normal touch = pain) and hyperalgesia (extreme pain response to a minor injury.) A way to combat these symptoms is to use pain medications in a preventative way. This means taking medications before you start to hurt so that you can reduce the pain response.
(9) Richard Gracely, Ph.D., and Daniel Clauw, M.D. University Of Michigan Health System. Fibromyalgia Pain Isn’t All In Patients’ Heads, New Brain Study Finds. June 7, 2002. https://www.sciencedaily.com/releases/2002/06/020607073056.htm
Fascia: According to Dr. Ginevra Liptan the fascia is the root cause of pain for fibromyalgia patients (10). The fascia is the thin, white/opaque connective tissue of the body between your skin and your muscles. It also surrounds your organs. Fibromyalgia patients have a lot of tension in their bodies and muscles due to excessive activation of their stress response. This makes the fascia inflamed. It also causes the fascia to adhere to the muscle which can be painful. It is important to address these adhesions through Myofascial Release (MFR) therapy. There are self-treatment techniques or you can go to a trained massage or physical therapist.
(10) Liptan MD, Ginevra. Fascia: A Hidden Piece of the Puzzle of Fibromyalgia Pain http://www.fmaware.org/about-fibromyalgia/fascia-fibromyalgia-pain/
Sleep Disorder: Studies show that fibromyalgia patients lack deeper levels of sleep and wake up frequently throughout the night (11). Deep sleep deprivation can cause pain, fatigue, and cognitive issues. Some studies link this to excessive activation of the stress response in fibromyalgia patients. Good sleep can be achieved by working to reduce the activation of the stress response and treating the sleep disorder with medication, supplements, good sleep hygiene, and mindfulness techniques. Since sleep is the largest contributing factor in fibromyalgia symptoms, working on getting good sleep is the first thing you should be addressing.
(11) Branco J, Atalaia A, Paiva T. Sleep cycles and alpha-delta sleep in fibromyalgia syndrome. J Rheumatol. 1994 Jun;21(6):1113-7. PMID: 7932424 https://www.ncbi.nlm.nih.gov/pubmed/7932424
There a quite a few other studies that have been done that prove the existence of fibromyalgia and how it impacts the physical body, but I’ve just mentioned the most recognized ones. It you want more in depth information I highly recommend ‘The Fibro Manual’ by Dr. Ginevra Liptan. It is the best book out there on fibromyalgia and is an excellent resource for patients and doctors alike. If your doctor is struggling to help you, then recommend or give them this book. It will greatly expand your treatment options.
If you are interested in learning more about ways to reduce your fibromyalgia symptoms or need support then schedule a free coaching consultation with me.