Today (May 12) is Fibromyalgia Awareness Day. May is Fibromyalgia Awareness Month (this awareness month is shared with several other similar illnesses including Lyme and ME/CFS). There are a lot of overlap between those three illnesses specifically, as well as with Fibromyalgia and a number of other illnesses. Because today is Fibromyalgia Awareness Day, I thought I’d share a list of things you should be aware of about Fibromyalgia.
1 . Fibromyalgia is Real – thankfully, there is a lot less disbelief in Fibromyalgia now than there was a decade or two ago (or even 6 or 7 years ago). That said, there are still those (including doctors) who don’t believe it’s real, who believe it’s all in the person’s head. It’s not. Fibromyalgia is real, and there’s even a blood test to verify it now.
2. Every Fibromyalgia experience is different – It’s interesting how people struggle so much to understand this yet they can get it about other illnesses. Migraine is the same, every person with migraine experiences migraine differently. Every person with Fibromyalgia experiences Fibromyalgia differently. The pain may be in different places, the fatigue may be higher for some than others. Some people have most of their pain in their lower body, while others have it mostly in their upper body. Some may have found relief to the point that they can live a mostly normal life, others still struggle to get out of bed.
3. Every Day with Fibromyalgia is different – This is one of the hardest things to understand about Fibromyalgia, even for those of us who live with it. Just because one day we feel so bad that we can’t get out of bed, doesn’t mean that the next we might not feel like we can clean the house (we may pay for it later, but that’s another issue). I remember during the worst of my illness I had one good month, I did a lot of cleaning in that month, I worked out, I felt pretty good. But, it was just a month and then I was back to feeling awful again. No explanation, it just was. Even now as I’ve largely recovered how I feel varies greatly from day to day.
4. Relief that works for one may not work for someone else – Despite what the commercials may lead us to believe, there is no magic pill that will help us all live normal lives again. There are drugs that have helped friends of mine greatly, but they laid me flat on the bed. Diet change has been the best thing for me and giving up gluten has been so worthwhile FOR ME, but that doesn’t mean it will work for everyone.
5. Fibromyalgia is not the same as depression – Just because Fibromyalgia and depression often come together does not mean that one causes the other. It’s hard not to be depressed when you are in pain all the time. That said, Fibromyalgia pain has been linked to decreased serotonin levels in the blood. This is why anti-depressants are often a first line of treatment for Fibromyalgia. It’s not because “it’s just depression” but rather because the same problem that causes depression can also cause Fibromyalgia.
6. People with Fibromyalgia tend to be overly-sensitive (in every way) – Hyper-sensitivity is common with Fibromyalgia. Sounds are louder, lights are brighter, cold is colder, hot is hotter, and a light touch can feel like a punch or a pinch. Every form of stimulation seems like more than it really is. Just recently I was sitting in a room with about 7 people and I could hear all the talk coming from nearby classrooms. It seemed so loud that I could barely pay attention o what was going on right there in front of me. After about 10 minutes of this I finally had to just leave and go somewhere quiet. I couldn’t take the noise.
7. Fibromyalgia can wreak havoc on relationships – Whether it’s a marriage or a friendship, Fibromyalgia can breed resentment in both directions. The resentment comes from not being able to do what others can do, or from not having your loved one there when you need them (because they are sick). Family members get tired of being caregivers. Friends get tired of inviting the sick person out only to have them say no, and then the sick person gets frustrated because people stop inviting them. It’s a vicious circle. Too often the person who is ill pushes those they love away thinking they are protecting them.
8. Fibromyalgia is so much more than just pain – While widespread chronic body pain is the hallmark symptom of Fibromyalgia, it is so much more than that. Key players in Fibromyalgia also include sleep issues (insomnia, disturbed sleep, etc), fatigue, migraine, and irritable bowel syndrome.
9. Not every doctor can or will treat Fibromyalgia – Fibromyalgia is a touch illness to treat. Few doctors understand it even to the level it currently can be understood. Even fewer doctors are up to date on the various treatments available. While it’s tempting to just take whatever medication is handed to you by the first doctor who finally diagnoses you, it’s important to do your research and find out what the options are, and find a doctor who really understands the illness and knows the many options there are for treating it.
10. The best tool for treating Fibromyalgia is pacing – As difficult as it is, you have to learn to listen to your body and stop when it’s time to stop. The temptation is to push through no matter what, to convince yourself that you have to do everything, but the truth is that you don’t. You can stop. By stopping today when your body says stop, or at least slowing down you’ll get more done when you do feel good, and you’ll do it better. By pushing through you’ll accomplish less and what you do accomplish will not be to your best ability.