If You Could Only See Pain

By Angie Arlington

In the early 2000s, I started my journey to find answers about my health. I was always tired, my body hurt all over, and I had no energy. Doctors told me it was “all in my head” because I also was depressed and anxious. I read an article about doctors talking about fibromyalgia and asking if it was a “real” diagnosis. I had all the symptoms, so I sought out the only doctor in Indiana who tested for and treated fibromyalgia. His office was over an hour away. Seeing him made me realize that the pain I had is not normal.

At that time, there were 18 tender points on the body, about the size of a penny, that doctors used as a diagnostic test. Fibromyalgia tender points are located in clusters on both sides of the body, including on the neck, chest, shoulders, elbows, hips, and knees. For a point to be considered tender, the spot should produce localized pain when your doctor presses on it with their finger. The doctor would push with enough pressure that their fingernail turned white. If a person reacted to pressure on at least 11 of these spots, they had fibromyalgia.

The doctor pushed on all 18 of the spots and my body nearly jumped from the pain! I asked him if everyone felt this level of pain and was surprised to learn that most people do not. I just wanted to feel better, and it was hard to explain that the pain changed in different parts of my body from day to day. Pain that ached, stung, pulsated, pounded, seared, throbbed, and burned. Pain that no one could see, so previous doctors assumed I was exaggerating or “faking it” for attention.

He explained that there were a few medications that help- mostly muscle relaxers and a non-narcotic called tramadol. He also told me that exercise was very important to help relieve the tightness in my muscles. There were days that it took me an hour to get out of bed, so the thought of moving my body more did not sound like fun. I started doing physical therapy and it did hurt a lot at first, but then I started to feel less sore when I moved. I learned that painful knots in muscles are often myofascial trigger points. Trigger points are hard, knotty lumps that form in taut skeletal muscles. Unlike tender points, which produce only localized pain, trigger points produce both localized and referred pain. Referred pain feels like it shoots or radiates to a different part of your body. Trigger points are far more common in people with fibromyalgia than they are among the general population. However, anyone can develop them. There’s a chronic widespread pain condition called myofascial pain syndrome. It involves chronic trigger point pain. Myofascial pain syndrome can coexist with fibromyalgia. Researchers believe now that fibromyalgia amplifies painful sensations by affecting the way your brain processes painful and non-painful signals. So technically, doctors were correct- it was “all in my head!”

At that time, researchers saw a correlation between car accident victims and patients who developed fibromyalgia. I had not been in any type of accident, so I fell into the “rare” group.

Over the last 20 years, doctors have come up with more diagnostic tests and no longer focus on the 18 tender points. Also, there is now a huge list of medications to try. Statistically, women are still more likely to develop fibromyalgia than men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression, and other invisible pain disorders. Over time, and after seeing several specialists, I was diagnosed with more health conditions than I could have imagined! My last diagnosis, in 2022, was hyper-mobile ElhersDanlos syndrome.

One thing that bothers me is when people tell me how healthy I look. The inside of my body is a mess of different problems from my head to my toes. I try to stay active and have learned to pace myself. In the beginning, if I felt good, I could clean my whole house in a day. But then I would not be able to move for a few days. With so many different diagnoses, it was hard to find the right medications, therapies, treatments, diets, and exercise routines that did not cancel each other out. Many of my health issues have overlapping symptoms and I have found that some patients with multiple diagnoses can draw their symptoms on a Venn diagram! When I have to rate my pain on a scale from 1 to 10, I always ask if they mean compared to people who do not live with pain and suddenly hurt. Talking to many other people suffering with different types of pain, I realized that pain is based on individual perspective.

Pain tolerance varies for everyonemany can deal with suffering and not realize that they have passed a dangerous level of pain and need medical help. How can anyone know what is “normal,” when no one asks how different parts of their body feel?

I have come a long way and have seen so many different types of doctors and therapists. Sometimes one technique helps for a while and then stops. I have tried traditional and non-traditional methods. It can be exhausting when you are a medically complex person with no obvious outward signs of illness.