“I feel like I’ve been hit by a truck” - What is Fibromyalgia?
A diagnosis of fibromyalgia is often met with relief. After months (or even years) of confusing symptoms and inconclusive test results, it is validating to finally have a name for what you’ve been feeling. But that relief can be quickly replaced with overwhelm as you have to maneuver through multiple medications and an internet full of treatment ideas, some with dubious claims. Let’s look at what fibromyalgia is, how it’s diagnosed and how an integrated treatment approach is the best way to take back control of your body and life.
Fibromyalgia is a condition characterized by widespread pain. The pain is often described as burning, soreness, stabbing, or even electrical. The pain can travel throughout the body and is associated with any number of other symptoms, including numbness, tingling, headaches, dizziness, brain fog, memory difficulties, chest pain, stomach pain or changes in urination. And, of course, fatigue. The fatigue of fibromyalgia can be as debilitating as the pain.
We have found that people use similar phrases when describing their experience of fibro:
“I feel like I’ve been hit by a truck”
“My muscles hurt like I’ve worked out, but I haven’t been able to work out in months.”
“I am stiff all day.”
“If I have a good day and get a lot done, I will pay for it the next day.”
Diagnosing Fibromyalgia
It is common to get a referral for a rheumatology consultation when you are suffering from any of the above symptoms because there may be concern for rheumatoid arthritis or lupus. Since there are no specific tests that can confirm a fibromyalgia diagnosis, ruling out these other autoimmune conditions is always a first step. But how do you know if you have fibro?
Currently, a diagnosis of fibromyalgia is based entirely on how you feel and what the doctor finds on your physical exam. Previously, doctor’s would focus on someone’s number of “tender points.” A total of 18 tender points were found in those with fibromyalgia and when 11 or more were “tender,” they could be given a diagnosis of fibro. Using this criteria, however, was found to be problematic as it grossly underestimated the non-pain symptoms of fibromyalgia and limited our understanding of the condition.
Much about fibromyalgia is still a mystery but some things are becoming clear.
Sleep: Sleep deprivation is a key component. Lack of high-quality sleep has time and time again been associated with the symptoms of fibromyalgia. In fact, one of the first signs of fibromyalgia can be dysregulation of the sleep/wake cycle.
The role of inflammation in fibro is still in question. For many years, fibromyalgia was considered to be a non-inflammatory condition. This is mostly due to the fact that the ways in which doctors’ measure inflammation (for example, in conditions such as RA) are often negative in those with fibro. For this reason, it’s still not standard to measure inflammatory markers in those with fibro. However, we now suspect that, at least in some, there is a neuro-inflammatory component to fibromyalgia. This points to the fact that just because we can’t see inflammation through the tests that exist currently, it doesn’t mean it’s not there! This is an area in which we continue to learn.
Nervous system: Research has shown that a key component of fibromyalgia lies within our nervous system. Our nervous system is composed of all the nerves throughout our body, spinal cord, and brain. This is a complex system and one of its many jobs is to give us information about our environment. For example, our nervous system tells us when we touch a hot pot. It sends a pain signal from our hands to our brain, which registers that and immediately sends a signal back to the hand, telling it to move. In fibromyalgia, it has been found that this system is dysregulated. People with fibro feel pain at a higher level due to an increase in frequency and intensity of the pain signal.
What’s the connection between all of these? Simply put, we don’t know. Does poor sleep lead to nervous system dysregulation? Or the other way around? Is the inflammation a consequence of the nervous system dysregulation or does it indicate there is something else driving the dysregulated nervous system (like autoimmunity or infection)? Long-haul covid has blown the door wide open for further investigation of these and many more questions. How infections may or may not be at the core of conditions such as fibromyalgia, chronic fatigue syndrome (myalgic encephalitis) and related syndromes will continue to be a topic of interest and research for the foreseeable future.
Treating Fibromyalgia
So what can we do to treat fibromyalgia? What are the options?
When it comes to medications, there are 3 FDA approved medications for the treatment of fibromyalgia. These medications each have an impact on the nervous system and have been found to decrease one’s pain level.
Duloxetine
Pregabalin
Milnacipran
These medications each have their own benefits and potential side effects. The best one for you is dependent on many factors and that decision is best made through trusting and thorough conversations with a doctor. It is also common to need a combination of medications. Despite the small number of FDA approved medications, there are a number of medications that experienced fibromyalgia providers like ours at Motto will use “off label” to address the pain and fatigue of fibro.
Medications can definitely help lower the pain intensity and frequency. But unfortunately they don’t help everyone and still leave many with persistent symptoms. Fibromyalgia is characterized by ups and downs, good days and bad days. The hope with these medications is that we can decrease the number of bad days, though it is rare to eliminate them completely.
This is where non-medicinal treatment options can play a large role. Previously many saw these approaches as non-traditional, complimentary or alternative but they are increasingly becoming mainstream because their benefits are undeniable.
Complete sleep evaluation: This may include a sleep study, but most definitely should involve an assessment of your sleep hygiene and a concerted effort to focus on having more quality sleep (without prescription sleep aids).
Physical therapy and physical activity: Moving your body is absolutely necessary to re-calibrating those dysregulated nervous system signals. Exercise and movements therapies need to be tailored to the unique needs and abilities of each person. When done well, these are effective at decreasing pain and improving quality of life.
Cognitive Behavioral Therapy (CBT): CBT is a structured form of talk therapy. It has been found to be very effective in helping people with fibro decrease pain and improve quality of life. Due to stigmas we still have regarding mental health, this treatment can sometimes be difficult for patients to embrace. Discussing CBT and the relationship between mood and pain can also be seen as suggesting someone’s pain is “in their head.” This couldn’t be further from the truth! Rather, it is an acknowledgement that there is a deep connection between our mind and body, and addressing both is necessary for complete treatment.
Diet Changes: For many people with fibro, focusing on diet has shown to be helpful. Working with a registered dietitian is the best way to find a diet that is best for you. There is truly no one size fits all, but early evidence shows that an anti-inflammatory diet can improve outcomes.
Community: Who we spend our time with affects our mood and our nervous system. This is especially true for those with fibromyalgia. To take a truly holistic approach to treatment of fibromyalgia, one must take an honest assessment of their environment, including who they spend time with. This includes finding those you can lean on for support when those bad days come.
Fibromyalgia is no longer a condition in the shadows. It is finally getting the attention it deserves. We still have more questions than answers, but we do know that an integrative approach provides the very best chance to feel better. That is why at Motto each patient has a full care team, including a Rheumatologist, nurse practitioner, nutritionist, and health coach. We coordinate care and tailor a plan that is unique to you, including pharmaceuticals and lifestyle changes, so you take back control of your health and live your best life.