The Center for Disease Control says that in 2005 the prevalence of Fibromyalgia (or Fibro), was about five million adults, and women were effected more than men and children. Men and children can also have the disorder, but it is less common, in fact, prevalence increases with age, and is most commonly diagnosed during middle age. (CDC.gov, 2015)

The Mayo Clinic has a fairly long and complicated definition of Fibromyalgia, but is summarized to

“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals…Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression. While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.” (mayoclinic.org, 2016)

Chronic Fatigue Syndrome has a definition that overlaps with Fibro in many cases. Some believe that there are just two names for the same disorder.

“CFS displays similar symptoms. However, a practical way to differentiate the disorders is that pain is the predominant problem in people with fibromyalgia, whereas fatigue is the major complaint in people with CFS. The pain of fibromyalgia is typically chronic and widespread, and is often associated with stiffness. On examination, many patients have specific sites (called tender points) that are extremely tender to touch. The detection of these tender points is helpful in making a diagnosis of fibromyalgia. The fatigue seen in people with CFS is generally profound, and can be completely incapacitating. Criteria for CFS established by the Centers for Disease Control and Prevention (CDC) are fatigue that has been present for more than six months and is accompanied by the following: a sore throat; enlarged or tender lymph nodes; muscle or joint pain; Signs and symptoms that are commonly present in both fibromyalgia and CFS include the following: sleep disturbances; headaches; impaired memory or concentration; dizziness; bowel complaints (such as bloating, diarrhea and/or constipation); anxiety or depression.” (arthritis.org)

Fibromyalgia sufferers want you to know a couple of things about the debilitating, and sometimes deadly disorder. I, myself, am a Fibromyalgia and Chronic Fatigue Syndrome (CFS) Sufferer. I asked the question “what is something you want everyone to know about Fibro and CFS?” in a couple of support groups I’m in on Facebook. I got an overwhelming response, so I’ve compiled a few responses of what we want people who don’t deal with it every day want you to know. I will speak from my experiences thus far, experiences from family members, and quote members of several support groups on Facebook.

The Diagnosis

It can take years of blood tests, imaging, and doctors visits to finally receive a diagnosis. You might run into a couple of problems when trying to find a diagnosis. Usually the first step, or it was for me at least, was making a trip to your general practitioner. This is where some problems arise. Every doctor has a different opinion on whether if Fibromyalgia and Chronic Fatigue Syndrome even exists! Because Fibro and CFS are characterized as having chronic widespread pain, and pain cannot really be tested in a lab setting, the medical provider basically has to trust that you are in as much pain as you say you are. So that brings on the other doctors visits. You have to find someone who either believes that Fibro exists, or someone who will just trust that you are in the amount of pain that you are in, and send you to a specialist. But you have to deal with the stigma first. When I first was seeking a diagnosis, I visited my GP, who ran blood tests and said there was nothing wrong with me and I’ll be fine, it is probably just a side effect of a medicine I was on. When I returned in less than a week, off of the medicine he was convinced was the problem, still in pain, he told me he would not give me drugs, that I should just leave right now. I didn’t want drugs! I wanted him to figure out what was wrong with me!

The Pain is Real, it isn’t in Our Heads

As a child, my small family was very close, almost every vacation we went on was all six of us were together. My late grandmother had Fibromyalgia. Although it didn’t get worse until she was in late fifties and early sixties, she still suffered. I remember two vacations specifically that we went on that she stayed in the hotel room because she was in so much pain that she couldn’t do anything. She would wake up and take a shower like she was getting ready to go exploring with us that day. But she would wake up and get ready an hour or two before everyone else because she knew that it would take her longer with the pain. Several times the rest of the family and I would wake up to her crying on the toilet because she couldn’t get up again (she would kill me if she knew I was saying this about her in an article), or sitting on the floor of the shower because her legs were tired and she collapsed. At home, she would cook for my grandfather (her husband) and drop the food and have glass shards everywhere because she was too weak to hold the bowl. I was always upset when she didn’t want to play with me, and she never told me why she couldn’t except that she was tired. I understand the pain she had now, because I have it too. I couldn’t even imagine the pain she felt while still playing with my brother and I, or cooking for my grandfather, because I can’t even do it now.

One commenter in a support group says she wants you to understand the pain. “The amount of pain. No one believes that it really hurts that bad.” Another woman says
“the ignorance of some people [doctors] because you can’t physically see it, [you’re] making it up. Oh, yeah, because we just love being in pain from head to toe 24/7”.

Medical Insurance and Cost

“I think the biggest issue is with the health insurance we are able to get that does not cover anything that is not part of what they call ‘western medicine’, some of the biggest recommendations for fibromyalgia are typically more of the holistic approach and it is very pricy, you pay for insurance for your regular doctor, the medicine they put you on, then if you try to go to a functional medicine doctor, you have to cover the visits and labs and supplements. They suggest to do massage therapy which isn't covered by insurance, aquatic therapy is the best if you have issues with arthritis like I do but that's not covered either. A lot of times doctors will flat out refuse to test you for something like Lyme disease. I've had a doctor tell me that that isn't common where I live when I know it is, and I've had many others tell me it is. I've had 2 doctors tell me that they don't care to find out what is causing the pain they just want to mask the symptoms basically. I honestly think our medical practices are a joke and our stance on homeopathic medicine as a society is misinformed and misguided to drive profits for the drug pushers” says a commenter.

For example, the massage that is recommended is expensive. Massage Envy is a chain spa across the U.S. I have visited several times, and while it helped my pain in the moment, it was back by the end of the day. That spa is obviously not covered by insurance. The prices start at $55 for a 55-minute massage. That price is only for your first visit, and increases to $99 for a 55-minute massage on visits after. So I would need a massage two to three times a week, making my weekly price over $250.

Remember those lab tests that my GP ran that didn’t even believe me that anything was wrong? Those bills are close to $300.

All in all, we just want you to support us as best as you can. Don’t dismiss our feelings and our pain. When we say we don’t feel like going out to eat, or feel like cooking, order some take out or cook something for us. You can’t make a doctor believe in this disorder or not, but you can. If you’re with someone who has Fibro or CFS, offer some back rubs or foot rubs, those really can help. Don’t force us to do anything that we don’t feel like doing just because we are always tired and always in pain. Fibromyalgia is real. Chronic Fatigue Syndrome is real. Our pain is real. Our symptoms are real. Please believe us.

I used several resources to find definitions used in this article. Here are the links to find your own information about Fibromyalgia and Chronic Fatigue Syndrome:

https://www.cdc.gov/arthritis/basics/fibromyalgia.htm

http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

http://www.arthritis.org/living-with-arthritis/tools-resources/expert-q-a/fibromyalgia-questions/chronic-fatigue-syndrome-fibromyalgia.php