Today – May 12th, 2018 is International Fibromyalgia Awareness Day.
An “invisible illness” that causes widespread pain and tenderness in the tendons, ligaments, and muscles of the body; the symptoms of fibromyalgia are not always easily seen. None the less, this chronic condition that affects approximately five to ten million Americans. Science has yet to identify the cause of Fibromyalgia, but that doesn’t make it any less real. Researchers are hard at work to find a cause, and from there a cure for this mystery illness. Currently it is believed that a neurotransmitter dysfunction may play a role. There is no known cure for fibromyalgia, but some patients report a lessening of symptoms by using a combination of traditional medicine and alternative therapies. People living with fibromyalgia become skilled in managing their symptoms, raising awareness to the condition, and staying hopeful for the future.
Fibromyalgia awareness is an important helping those who have it lead better lives.
Here are just a few things I would like people to know about my life with fibromyalgia:
1) Every morning starts with pain and stiffness, the first hour of my day is always rough.
2) There are very rare no-pain days; but most of the time, no matter what I am doing, the pain is there.
3) Thank you for thinking of me when you see a treatment for fibromyalgia out in the world. Just know that there is no cure for this, only management. I am always going to have fibromyalgia. I will not “Get Well Soon,” though I might “Feel Better.”
4) If I did something fun and active one day, I will need a day to recover. Sometimes, I will need even longer. When I walked the half marathon, it took me more than a month to feel OK again. However, the experience was worth every minute.
5) Every day I have to find a balance between living a full life and the consequences of more activity than my body can handle. I do everything I can to mitigate my disability, yet some times it is just too much.
6) I am more than “just tired.” When I say I need a nap, it’s not a luxury, it’s a medical necessity.
7) Even normal daily tasks can cause extreme fatigue. Simple things like taking a shower and blowing out my hair often leaving me feeling drained.
8) Let me sleep, it’s not that I don’t want to spend time with you, rather my body just has other ideas.
9) Changes in the weather make me flare, and the more it changes the worse I feel. Winter is the worst.
10) When I retreat, it can seem like I just want to be alone. But that’s when it is especially relevant to check in on me now and then. Sometimes I am in too much pain to be able to express or manage the things that I need.
11) I love hugs, please hug me! Just be gentle about it, because sometimes it hurts.
12) Bright lights, loud noise, strong smells, and too many people can overload my senses and make me spiral into an anxiety attack.
13) Some days it’s OK to let my Fibro win. Each day is a new battle, but I will win the war.
14) Fibromyalgia is not just about pain, there are many symptoms that most people don’t even realize are related. The cognitive effects or “fibro fog” can often leave me confused, disoriented, and with gaps in my memory. For me this is one of the worst parts of fibromyalgia.
15) Yes – I can get moody and frustrated. I try to be kind to myself and others, but sometimes the pain and fibro fog just gets the better of me.
16) If I cancel my plans with you, please don’t be mad at me — I already feel horrible about it.
17) Every case of Fibromyalgia is a little different. Just because another friend with fibro may not have severe pain doesn’t mean they don’t suffer in other ways. Take your friends with fibro at their word, we don’t choose to be sick.
18) “You should exercise.” Yes, I should, and I try to, but sometimes exercise sets off a flare or causes injury so I need to be very careful. In my head I run like a Kenyan, the reality is more like a large sea turtle crawling up the beach.
19) Going to the doctor makes me mad because it reminds me that I am really not OK, as a result it often involves me having to argue with the doctor just to get them to listen to what I am saying.
20) I work very hard at not appearing to be sick, and hiding how much pain I’m really in. You may not be able to see a bad day due to that, it doesn’t mean that I am not feeling the wear and tear.
21) Sometimes I over do it by accident and it effects my entire week. Many times I don’t realize that I have made a mistake (like sitting on a hard chair at church instead of a cushioned one) until hours later when I suddenly can’t walk.
22) Not all disabilities can be seen. Be kind to me and to others living with chronic illness. Don’t judge us with a “normal” measure just because you can’t see the disability.
23) Most of all – always ask if I would like to be included, because I do want to be included. But – don’t feel bad if I say no, it’s just that sometimes the more important thing is for me to stay home and take care of my body.
Finally, are you wondering how you can help raise fibromyalgia awareness? Go ahead and share this article on your social media channels ! Get the word out that living with fibromyalgia doesn’t mean you can’t have fun and do things, you just have to be prepared to manage the consequences afterwards.