Fibromyalgia is a poorly understood pain disorder, which makes it difficult and frustrating to treat.
Fibromyalgia falls under a group of disorders known as Central Sensitization Syndromes. This means that while the pain itself is felt in the musculoskeletal system, the primary issue seems to be in the nervous system. This explains why the pain is so atypical and widespread – as well as why it can be hard to treat. There is a lot of research into this and there are a lot of theories as to the underlying cause of pain.
The hallmark of the disorder is not only pain but also a cluster of other symptoms related to the pathophysiology. Those symptoms often include both sleep dysfunction and fatigue. The most well-known marker of fibromyalgia are the “trigger points” – a set of common pain locations in the trunk and extremities.
Fibromyalgia is difficult to diagnose because it is considered both a clinical diagnosis as well as a diagnosis of exclusion. This means that as a doctor, you are ruling out other disorders – getting negative tests – and that you are basing the diagnosis on what you see and hear on examination since there is no specific test for fibromyalgia at this time. This means it can seem like you are telling patients what they don’t have or that there is nothing wrong with them. That isn’t true; it is simply part of the diagnosis. Other disorders, like migraines, remain clinical diagnoses as well as diagnoses of exclusion.
I have (and have had) many patients with fibromyalgia. Their complaints are both varied and similar. They are similar in that they:
- Feel a significant impact on their lives
- Feel more pain than most people seem to recognize
- Have flares which significantly impact their daily productivity
- Have significant fatigue
However, they vary in their description of pain – some have more neuropathic pain (burning or skin pain), some describe pain that is more classically musculoskeletal, and some is more of a heaviness. It has been well described to me as feeling like your arms and legs “are filled with wet sand.” The level of somatic (body) complaints varies as well. Some people have a lot of dizziness or cognitive dysfunction (brain fog). Some experience a lot of mood symptoms – it is understandable to have emotional symptoms in response to pain. It is also known that this is a disorder of neurotransmitter dysfunction – so it is also possible that it is simply a consequence of neurochemical imbalance or overuse.
Either way, no one thinks anymore that the pain or the fatigue is simply a result of depression in patients or that any of this is dismissively “in a patient’s head.” Hopefully, that outdated idea doesn’t keep patients from coming forward to seek help.
Arthritis vs fibromyalgia
Sometimes, people confuse the symptoms of fibromyalgia for rheumatoid arthritis but the two are actually very different disorders both in underlying cause and in symptomatology. That said, they have some similarities. Both can have fatigue. Both can have systemic pain. Both can have genetic links or a predisposition. Both are most likely to occur in women between the ages of 30-60. However, rheumatoid arthritis is an autoimmune disorder where the body attacks its own musculoskeletal system. There is inflammation of the joints and potential for breakdown of the bones and joint spaces over time. Treatments are aimed at reducing that inflammation. In fibromyalgia, the only inflammation that has been specifically found in research is neuroinflammation or inflammation of the nervous tissue. Fibromyalgia is not a disorder of the joints and there is no data to indicate that classic anti-inflammatories are effective.
If you’re having unexplained persistent pain, talk to your doctor. While fibromyalgia is not easy to diagnose, arthritis is, so ruling that out is often the first step.
Chronic fatigue syndrome vs fibromyalgia
Fibromyalgia is also sometimes confused with chronic fatigue syndrome because there is a lot of commonality in the symptoms. In the diagnosis of fibromyalgia, fatigue is a key part. Many fibromyalgia patients have pain that actually feels like heaviness. Chronic fatigue syndrome does not require pain but it always has a dramatic onset – usually triggered by a virus. The difficulty is that sometimes fibromyalgia starts with a similar trigger as well. Chronic fatigue syndrome is not genetic and it can happen at any age but it usually runs a course and then goes away. While there may be some overlap – I firmly believe we don’t know all there is to know about many diseases – for now, chronic fatigue syndrome and fibromyalgia are treated separately.
Fibromyalgia pain can be triggered by a number of different things. Initially, it can be triggered by a virus or by medical treatments. For instance, steroids are particularly known for triggering fibromyalgia or fibro-like pain.
In a patient with chronic fibromyalgia, flares can be triggered by increases in stress; by changes in the weather (especially extreme temperature changes or barometric pressure changes); or by changes in hormones, such as menstrual cycles, hormonal medications or perimenopause.
Exercise statistically helps fibromyalgia pain but the wrong kind of exercise or going “too hard too fast” on a new routine can certainly increase any type of musculoskeletal pain in the short term.
While I mentioned that fibromyalgia is not a disorder of classic inflammation, patients can certainly be sensitive and have inflammatory responses to food or food additives. When that is the case, the GI tract flora and the immune system respond to ingested triggers – food that has been eaten. While there are many potential food triggers and they differ from person to person, the most likely culprits are artificial colors or sweeteners and too much sugar or wheat.
Since triggers vary from patient to patient, it’s a good idea to track your flares alongside the food, weather, stress level, hormone cycle, and other potential triggers. Sometimes the answer is obvious once the pattern is visible. More often, it’s not and the next step is to begin eliminating factors to try to pin down specific triggers. For many people, however, it’s never that simple and there are many factors, known and unknown, that trigger a flare-up.
Take charge of your recovery
Fibromyalgia is a multifaceted disorder. Not everyone’s symptoms are the same, therefore not everyone will find relief in the same places. Working with a specialist who can study your symptoms is an important part of the recovery process – as is knowing that this is a chronic disorder and that managing your flares requires a long term plan (just like with asthma or diabetes).
Find a physician and a physical therapist who will help you with that journey. Work on sleep and on exercise. Know that focusing on stretching (I am a big fan of exercise modalities like tai chi, yoga, or pilates in any type of pain disorder) is important to your long term well-being. Water exercise can also be great. This is not minimizing your disease; it’s managing it.
Lastly, don’t underestimate the impact of the disease on your mood – and vice versa. Look for support groups online or local to where you live. If you find a provider who will work with you there are lots of other options – from prescription medication to vitamins to supplements.
Moving beyond the stigma
There was a time when patients felt a stigma about fibromyalgia but that has changed in recent years. Fibromyalgia is no longer considered “not real pain” or purely psychiatric pain. While doctors can sometimes seem frustrated with treating fibromyalgia, it’s not because they don’t believe in the disease or believe the patient; it’s simply because it is often difficult to treat and because science doesn’t actually understand all the underlying mechanisms.
I remind my patients that what we do know about fibromyalgia points to a neurologic cause. There is a lot of emerging fibromyalgia data about changes in gut flora, neuroinflammation, small fiber neuropathy, and changes in neurotransmitter levels.
This means that treating the disorder often requires changing gut flora and changing neurotransmitters. Because changing neurotransmitters is also a treatment for disorders such as depression and anxiety (your body uses neurochemicals to send all its signals), it can be presumed that doctors are treating a psychiatric disorder.
The modern medical climate is such that there is far too little time to explain treatment protocols or the reasons why a medicine might help. If I could fix the medical system it would be with time (but that is a different blog post altogether). Because of communication issues, I think that the stigma has persisted and patients can feel dismissed – but in reality, it is simply because certain neurotransmitter medications have proven far more effective against fibromyalgia than classic anti-inflammatory or narcotic pain medications.
This doesn’t mean a physician is implying you have a mood disorder. Truly. We just want to give you the best chance of feeling better. So if you’ve got pain you don’t understand, or if you’ve already been diagnosed with fibromyalgia, don’t go it alone – let us work with you to help relieve your symptoms. Even though doctors don’t fully understand the causes, there are countless pain relief treatments to manage the symptoms.
Amy Miller, MD, is a physician at Integrative Pain Specialists. After practicing more than 10 years as a family physician, Dr. Miller transitioned her skills and extensive training in integrative medicine to help patients understand and overcome chronic systemic pain. Dr. Miller earned a Bachelor of Science from Georgetown University and Doctor of Medicine from Medical College of Ohio.