Your Support System for Fibromyalgia
I was diagnosed back in 2000 for Fibromyalgia. I was 40 years old. I started out with muscle pain in my thighs and it gradually spread everywhere else except my lower legs and lower arms. I was diagnosed with Arthritis back in my early 30's in my hands and knees. Everything else I have, I have spent a lot of money on trying...
View MoreDiscuss the support system you have to help face the challenges of Fibromyalgia
My only support system is a massage therapist that gives me a free massage to help ease the pain. My doctor has tried everything else and filled out the papers for my disability information. My grandson will walk on my back when I can't bend to pick something up. I read a lot of articles and online discussions.
Who are the key members of your support team?
My friend that gives me the massages. She knows how bad I hurt from when I was working. My grandson that will pick something up for me when I can't bend. My doctor.
Do you believe you receive adequate support?
No. People think you can wait a loooong time to know if you can get disability when you have bills to pay and you have no money coming in. You are stuck between a rock and a hard place wondering how you are going to keep paying your health insurance, car insurance, groceries, doctor bills. If you are considered disabled, you can get help with things. When you are not, and can't work, you are stuck. They told me 18 months for my hearing. I still have till about December. I can't wait that long. My husband pays for all our other bills.
What do you wish family and friends would better understand about fibromyalgia?
That you don't necessarily have to be weak when you have Fibromyalgia. You have flare ups that come and go when you over do things or when you are stressed. When things get irritated from lifting or pushing something, you just can't do things anymore. Sometimes it takes days to calm down. Some people maybe even a week. I had pain so bad for a whole year due to ongoing stress at work. I finally got to the point where I couldn't continue to work. We need help around the house and grocery shopping. Don't expect us to keep doing things when we are hurting. I think the disability people need to understand that when we are sent to a random doctor that has never seen us before and doesn't know how everything affects our bodies, it doesn't help. The information from the doctors I have seen and my own doctor's notes on me, should be enough. I was at the random doctor when I wasn't hurting so bad. It sure hurt to sit there and wait to be seen though. We get frustrated, stressed, and upset, because we hurt, we are pumped full of medication we don't want to put in our bodies for the pain, and it is a rest-of-your-life thing.
