By Victoria Reed, PNN Columnist

Up until about 10 years ago, I had never heard of fibromyalgia. But during a routine medical visit, my doctor recognized symptoms that I described as possibly being signs of fibromyalgia. After an in-depth exam and other testing, a diagnosis of fibromyalgia was made.

Fibromyalgia is a complex disorder which causes widespread musculoskeletal pain, fatigue, sleep and memory issues. Symptoms can begin after a traumatic injury, surgery or infection. It sometimes takes many years to receive a diagnosis, and there is currently no cure.

People like me with autoimmune disorders, such as rheumatoid arthritis or lupus, often suffer from fibromyalgia. It is more common in women than men. The disorder can be accompanied by headaches, irritable bowel syndrome, anxiety and depression. Many fibromyalgia patients also complain of “fibro fog,” which impairs the ability to focus, pay attention and concentrate on mental tasks.

Fibromyalgia seems to run in families. I have multiple family members with the condition, spanning at least three generations. My mother had symptoms of fibromyalgia, but unfortunately never received a diagnosis.

Many experts agree that the key mechanism behind fibromyalgia is central sensitization, which causes the brain and spinal cord to become hypersensitive to pain signals. Pain will be amplified and linger well beyond the initial injury. The hypersensitivity can also affect other senses, leading to discomfort with strong scents or chemicals, bright lights and sounds. Being in loud, crowded spaces can create an overwhelming experience for fibromyalgia sufferers. 

Unfortunately, fibromyalgia is still a somewhat controversial diagnosis, because it is not yet fully understood and its symptoms can overlap with many other conditions. Some people even say that it’s a “garbage can” diagnosis that’s only given when no other one can be made. Many old school doctors believe that fibromyalgia is not a real condition, which is why it can often take years to receive a proper diagnosis.

However, recent research has discovered that there are differences in the brains of fibromyalgia patients. One important discovery is that of neuro-inflammation, which, simply put, is inflammation in certain regions of the brain. This research, documented by PET scans, does confirm inflammatory mechanisms in the brains of fibromyalgia patients and is a major step forward in trying to understand and treat it. It also helps to validate the existence of the condition itself.  

People with fibromyalgia are sometimes not taken seriously by their own doctors and denied appropriate pain management. Many are also denied disability payments as well. I know from experience that the condition can be terribly painful, with deep muscle aches and sore tender spots all over the body.

I have not had success with any of the traditionally prescribed drugs, such as Lyrica (pregabalin), an anticonvulsant that’s also used to treat nerve pain and seizures. While I’ve had some success with a high-quality CBD oil and various CBD creams, it is my prescribed pain medication, in combination with acetaminophen, that gives me the most pain relief.

Unfortunately, some fibromyalgia patients encounter roadblocks in finding a physician who is willing to prescribe pain medication if the only condition they have is fibromyalgia. This definitely needs to change! Fibromyalgia patients are worthy of treatment whether they have other pain conditions or not. The current anti-opioid climate continues to cause patients to suffer needlessly.

If you feel that you may be suffering from fibromyalgia, don’t be afraid to push, push and push for a diagnosis! If your doctor is not willing to help you, look for another doctor and don’t stop until you find one that takes your symptoms seriously. Research all you can on the condition and learn what you can do to help yourself.

Even though it might be difficult to exercise due to the fatigue that fibromyalgia causes, start by adding a little walking to your daily routine, even if it’s just 5 or 10 minutes. Exercise is good for your overall health and well-being, and it can help improve your mood. Being completely sedentary will only make things worse.

Regular massage is sometimes prescribed as well. If you can’t afford a professional massage, you can get a prescription for a therapeutic/medical massage, which will be a little cheaper. You can also purchase one of those self-massage sticks that can be found at sporting goods stores. I have found these things to be helpful to manage my symptoms.

I also suggest joining an online support group. There are many, many people suffering from fibromyalgia, and in these groups you can connect with people around the world, make some new friends, and learn about treatments that work for others.

Living with fibromyalgia is not easy, but it doesn’t have to be a hopeless situation either. If more doctors would take the condition seriously, make a timely diagnosis and provide appropriate treatment, perhaps there would be less suffering for those of us with fibromyalgia.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.