Fibromyalgia is one of many conditions that are considered ‘invisible.’ Many people don’t understand the condition, and many others are living with it, sometimes in silence, because of the stigma that’s attached to ‘invisible illnesses.’ I wanted to write an article on the best meds for Fibro, what to do if you think you may have Fibro, and soon my list of articles to write grew to the point where I’m going to have a very busy August in the hopes of helping out folks like me who are living with the condition. Today, I’ll just start with an explanation of what it is, for those who think they may have it, and those with loved ones and friends who may not understand it fully.
WHAT IS FIBROMYALGIA?
Fibromyalgia is a condition that is now believed to be caused by a disorder with the central nervous system. causes the brain to receive pain signals when there isn’t any identifiable cause for the pain or tenderness. Pain/tenderness usually includes muscle aches and joint pain, and can also cause the skin to be very sensitive, much like when you have a high fever or a bad sunburn. Sometimes, this pain can be so severe that it’s impossible to find a way to ‘exist’ as I put it. Sitting and lying down can be too painful, and I myself sometimes lean over my breakfast bar when it’s really bad and find myself leaning over it and rocking mindlessly. The pain usually comes in what we diagnosees refer to as ‘flare-ups;’ the pain is not non-stop, but rather tends to flare up over time. A flare-up can last a few days, weeks, or months, but usually it comes in waves over time.
There are more potential co-morbidities associated with Fibromyalgia than I can list here and more are being discovered as research continues. The most common co-morbidities are:
- Irritable bowel syndrome
- Chronic fatigue syndrome
- Tension or migraine headaches
- Temporomandibular disorder
- Major depressive disorder (MDD)
- POSSIBLY hypothyroidism
- POSSIBLY chronic autoimmune diseases such as rheumatoid arthritis and systemic lupus erythematosus.
This is not an exhaustive list, but these are the key co-morbidities. Other co-morbidities are still being investigated, and it’s very important to note that other, unusual conditions can arise in folks who have been diagnosed with Fibro.
Perhaps the number one question that folks want to know when they are diagnosed with the illness, as well as family members and friends, is ‘what causes it?’ Unfortunately, there is no firm answer to this question yet. Studies are now showing that first-degree relatives of those diagnosed with Fibro are more often diagnosed as well, or show a higher number of ‘tender points’ upon examination than those who are not first-degree relatives of a patient who has been diagnosed. To further complicate things, trauma such as serious injuries or illnesses, car accidents, etc. are also thought to be ‘triggers’ that cause the illness to begin to manifest itself; one heritable factor that may be shared by those with Fibro is a single nucleotide polymorphism* in the regulatory region of the serotonin transporter (5-HTT) gene. This polymorphism is found more frequently in patients with fibromyalgia compared with healthy controls. There is also evidence from studies that points towards social stresses, particularly work environments that are either physically demanding and/or highly stressful, that appear to contribute to pain perception in Fibro patients. Greater sensitivity to pain and abnormal functioning in the hypothalamic-pituitary-adrenal axis of the brain causing issues with hormones such as cortisol have also been found to be present in patients with Fibro compared to the healthy control population in these studies. In other words, research is beginning to tease out some of the factors associated with Fibromyalgia, but there doesn’t seem to be just one contributing factor. Based on research, it seems that Fibromyalgia is a multi-faceted disorder with a variety of factors contributing to the symptoms.
Ah, treatment. This is the other question patients and family members/friends have when a diagnosis is achieved. Unfortunately, the variety of treatments available for Fibromyalgia is fairly narrow, and a medication that helps one patient may not do anything for another. Treatment options include not only medications, but also psychological, behavioral therapy, and relaxation techniques come into play along with diet and exercise. The most effective way to settle down the frequency and intensity of flare-ups seems to be a consistent exercise routine. Paired with relaxation techniques and therapy, at the very least, it’s a good start. With medications such as some anti-depressants that have been found to be helpful, and home remedies (hot packs, warm or hot baths, comfortable clothing during flare-ups, a good diet, and resting well are also very helpful). In terms of medication, aside from anti-depressants, there are also non-opioid drugs such as Marijuana (both CBD and THC oils or herb), Gabapentin, and Pregablin (Lyrica) and Tramadol that some have found have been helpful, and then there is a very wide and diverse variety of opioids and delivery methods that are used when all else fails. If all of that isn’t really working, there are nerve blocks that can be performed that last a few months, botox injections for migraine/stress headache sufferers (can you believe it! ‘Oooh, doctor, my ‘elevens’ are hurting – make sure you get those!). There are also electric gadgets, tens machines, and supplements that may or may not work, and have not been studied in peer-reviewed journals. This is the most confounding factor and most frustrating aspect of Fibromyalgia for both doctors and patients.
If you think you may have Fibromyalgia, or have already been diagnosed, it’s a good idea to seek out support. Some hospitals run a support program for chronic pain sufferers, and some communities organize such groups. If you can’t find a group close to you, there are many Fibromyalgia and Chronic Pain support groups on Facebook, where you can discuss, ask questions, relate to others, and support others who are on the same path that you’re on. Being involved in a group of some kind can be extremely reassuring – for example, just tonight someone in one of my chronic pain groups posted about her sleep issues over the last few days, and she was very obviously frustrated and exhausted. Several members offered advice and empathy, and invited her to pm them if she wanted to talk. It’s very important for you to know that you’re not alone! If you have family or friends who just don’t understand Fibromyalgia, point them to this post, have some flyers/brochures from your doctor if possible, or go online and find a good site with some comprehensive information, and explain to them that it’s really important that your support system understands that this is a real illness with very debilitating symptoms that can wax and wane over time.
*polymorphism: the condition of occurring in several different forms. In this case, a unique polymorphism is seen in the regulatory region of the serotonin transporters in the brain in patients with Fibromyalgia.