Yes, Fibromyalgia is Real: Diagnosis and Treatment

by Leslie Farin

For years, controversy swirled around the diagnosis of “fibromyalgia”. Doctors thought it wasn’t a real condition. Many viewed it as a dumping ground for drug-seeking patients with unexplained pain including numbness, tingling and burning, severe fatigue, tender points throughout the body, and sleep issues. Thankfully, today more and more neurologists acknowledge that fibromyalgia is a real disorder with chronic pain.

Fibromyalgia doesn’t have a clear and well-understood underlying cause, which is the reason for the controversy and skepticism in the medical community. Some experts believe it involves a combination of genetic, environmental, and psychological factors. Diagnosis of fibromyalgia is typically based on a combination of clinical symptoms and by ruling out other possible medical conditions.

Though the exact cause remains uncertain, individuals who suffer from fibromyalgia experience very real and frequently debilitating symptoms. Treatment approaches often involve a combination of medications, lifestyle changes, and physical therapy.  Sometimes physicians recommend psychological interventions to manage the pain and improve overall quality of life.

One Patient’s Personal Journey with Fibromyalgia

My interest in fibromyalgia is somewhat personal. I know more than a few individuals who suffer from this condition and wanted to understand it better. One is a dear friend, Trisha Lehrman, who agreed to answer some questions in order to help others with fibromyalgia. Below are my questions, along with her answers.

How long have you had fibromyalgia?

I first remember experiencing symptoms during college but had no idea where the body aches came from. Usually, the aches followed nights when I had a restless night or didn’t get enough sleep. In fact, it was only years later that I made the connection between the pain I felt at that time and the lack of good-quality sleep.  I first heard of Fibromyalgia when in my mid 20’s but at that time, my rheumatologist, one of the most well-respected in Dallas, tried to convince me the pain was all in my head. He gave little credence to the idea of Fibromyalgia as a real thing. Keep in mind that was back in the late ’70s or early ’80s.  Luckily, a lot changed since then.

What are your symptoms?

For me, the major symptom is a continuous throbbing aching pain. It is not a function of movement but is ever-present even when sitting or lying down.  It is my upper body that is always the most severely impacted.  The pain primarily occurs in my arms, but my legs are affected at times as well.  In addition, my neck and shoulder muscles tend to overreact and hold onto tension unnecessarily. When that happens, it becomes very difficult to get those muscles to release the tension which leads to pain in those areas too. The pain tends to disrupt my sleep and it is only when I get an abundance of deep good quality sleep that I am able to resolve the flare-ups.  Not getting enough sleep or good quality sleep is the one thing that ALWAYS causes my fibromyalgia to flare up or get worse if it is active at that time.  So, the pain and the disrupted sleep become a vicious cycle that is difficult to interrupt.

What symptoms originally took you to the doctor and how long did it take to correctly diagnose?

I went to several doctors when in my 20s and 30s looking for an explanation for my chronic pain and fatigue. No one could identify a cause or give me a diagnosis.  They were able to tell me what it wasn’t, but not what it was.  By this time, I had 2 young children and tried to adapt the best I could.  For example, I didn’t have the strength to lift up my son and couldn’t tolerate the pain caused by putting him in the grocery cart or on the diaper table.  I looked for friendly looking strangers in the grocery store to assist me to put him in the cart. At home, I set up a step stool for him to climb directly onto the diaper changing table by himself.

I did some reading and eventually diagnosed myself.  I also came to realize that the quality and amount of sleep I got was definitely a major determiner of how much pain I had.  It wasn’t until 2006 that I finally found a physician who specialized in Fibromyalgia and Chronic Fatigue Syndrome. Thankfully, he diagnosed me correctly and I started treatment.

How often does it flare up?

It used to flare up much more often than it does now.  I think that the stress and demands of raising my children and developing my career when younger resulted in inadequate sleep which led to frequent flare-ups.  After going through my most intensive period of treatment (2006-2009), I began to see improvement, little by little. When placed on hormone replacement therapy (HRT) during menopause, my flare-ups became fewer and less intense.  Now that I can no longer be on HRT due to a breast cancer diagnosis a few years back, I now have more frequent flare-ups. The good news is that I can usually get things under control by making a point to get more sleep.

How do you treat your Fibromyalgia?

The treatments I received through the practice specializing in fibromyalgia and chronic fatigue included numerous regimens to treat viruses and infections discovered through extensive blood work.  They encouraged me to take Tylenol PM to help with my sleep.  Eventually, I was prescribed Trazadone as a sleep aid.

In addition, my doctor diagnosed hypothyroidism and prescribed thyroid medication. A year later, he suspected I had an immune deficiency and referred me to an immunologist, who discovered I had Common Variable Immune Deficiency.  Treatment for this condition requires a monthly infusion of IGG (immunoglobulins), and I continue to get these infusions every month.

Several years ago, my doctor told me about a new medication that showed success with decreasing Fibromyalgia pain.  I agreed to try it.  It is called Low Dose Naltrexone and is an “off label” use of this medication.  I take it on a daily basis which I find helpful with the pain. In addition, staying active is critical for me in managing my symptoms. I do yoga which keeps my muscles stretched and flexible. Additionally, I walk regularly and take a senior exercise class several times weekly. Finally, I find that massage, by a massage therapist who understands Fibromyalgia, helps to interrupt that pain cycle when it gets out of control.  There are times when I need massages every 2 weeks just to keep things “calmed down”, which was quite helpful during stressful periods.

How Do You Know Which Treatments Will Help Your Fibromyalgia?

No two cases are the same. It’s essential to work with a healthcare provider experienced in fibromyalgia to develop a personalized treatment plan tailored to your individual needs and symptoms. Fibromyalgia treatment typically involves trial and error to find what works best for each person, so patience is key. For many, mediation combined with natural remedies is the best answer.

Natural Treatments for Fibromyalgia

Below are some natural treatments people find helpful, depending on their situation. Keep in mind that what works best for one person might not work as well for another. Working closely with your healthcare providers and maintaining open communication about your symptoms and relief methods will enable you to find the best strategies for managing your fibromyalgia.

Meditation and mindfulness

Meditation and mindfulness work by helping to shift your focus from your pain and promote relaxation. In this way, you can lessen your perception of pain. Mindfulness-Based Stress Reduction (MBSR) is one example of a program that combines mindfulness, meditation, and yoga which improves the overall quality of life for some fibromyalgia sufferers.