Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?
I wish when you try to get disability and you have fibromyalgia, arthritis, along with autoimmune, sleep apnea, etc. they would understand there are days that everything affects you and you need to take meds that make you sleepy and relaxes your muscles so you can't drive and just want to stay in bed. I want them to understand that stress makes it so much worse. I want them to understand that there are a lot of things that pop up unexpectantly and cause you more problems that last a few days. It can be pinched nerves, asthma reactions, stomach pain that brings you to your knees and you can't walk. Lack of sleep because you wake up hurting. Inflammation squeezing your ribs so it's hard to breathe. Brain fog. You have to pick and choose things that need done so you don't over do it. Just because you don't need people to help you dress and things like that yet, doesn't mean you can hold a job. I want people to understand that not everybody wants to take opioids, and other drugs that can kill you, mask the pain instead of correct it, can ruin other organs you have. I'd like massages, acupuncture, that medicinal marijuana to take care of my issues. Health insurance and doctors would rather push drugs. Disability committee wants you to be close to death to be able to get it.
Has any one told you that "you don't look sick?"
Not really, but you can almost see it on their faces and how they treat you. They wonder how I can do all I have done at my job if I have all of these problems. Fact is, I'm a dependable person and I don't slack on the job. Doesn't mean I'm not in a lot of pain and I don't pay for it big time when I'm done.
Tell us, who is your biggest support system while coping with fibromyalgia?
A disability group that goes to work for people to help get disability if you know what I mean.