My nurse practicioner has a sense of humor we can all appreciate. Her comment was, "You're in incredibly good health--especially for someone who hurts like h**l all the time!"
You've got to love a woman like that!
All kidding aside, they have to rule out all kinds of things from arthritis to lupus to cancer to only the Lord knows what else. THEN they can give a diagnosis of FM. It's because there are so many other things that can account for our symptoms. After they rule out all the things that are really dangerous or are simply more treatable, they can say, "You have fibromyalgia." (If your doc is really old, he may say "fibrosis."
Have you tried those clip on thingys for tennis elbow? It's amazing how much mine helped a few years ago.
We've all been there. We have something special to do. We plan for it. We budget out time and our resources. We pay attention to our diet and medication schedules to be fit for the big day.
And then it happens. The Great Energy Switch decides to turn itself into the OFF position. You feel like a balloon with a not-so-slow leak. Standing is too much effort. Sitting is too much effort. You HAVE to go lay down.
Today was my birthday, my 70th birthday. Dear hubby was grilling steaks. I had baked potatoes all scrubbed and ready, I'd fixed a big bowl of salad. The table was all set. I was just rinsing off some grapes to have with desert when the fatigue hit. I finished the fruit and sat down for a minute. It wasn't enough.
Hubby brought me supper in bed. I ate alone while everyone else was sitting at my birthday table.
In the grand scheme, it's not such a big thing, but for me--just for today--it was a symbol of all this condition has robbed us all of for entirely too long. We need a cure. Sometime before I hit 80 would be nice.
You do know that there are some docs out there that say they can cure your FM by fixing your Chiari Malformation, don't you? It's when the spine high in your neck is pressing on the spinal chord. It is correctable surgically.
Whether it can cure FM or not is another question. SOME people with FM have this problem. But no one (not even the docs that swear by the operation) can claim it would make all of us suddenly be FM free.
It's one of those gray areas. No one is claiming these surgeons are quacks, but not too many neuros or rheumys are sending their patients in for the surgery either.
You NEED to have that insurance. I don't know what we would have done without it. I had been our principal breadwinner, working full time all year. (Hubby's job was part-time, hourly, and only paid during the 30 weeks that college was in session!)
My employer had a sick bank, we could join and donate sick days for others to use as needed. This helped us when I was off for 6 weeks.
The NYS Teachers' Retirement System includes disability insurance. It was based on years of teaching and all you needed to apply was a letter from your doctor. It covered our mortgage for us.
SSDI was denied, appealed, and finally won 2 years after my last day teaching. It helps too. We do need groceries.
Get whatever disability insurance you can beg, borrow, or steal!
I go from feeling hot and sticky to being cold and shivering. This happens only when it is humid out and our old house gets damp. I dress for the way I feel at the time. On hot days when I start out in shorts, I still bring along my sweats.
Mimi's right about the cuddl duds. They do help you keep warm. They come in styles like camisoles and others that give more coverage.
Mary's right. Your meds are off. Yes, we do need some extra naptime, but it is usually because we don't really sleep at night.
Have you been tested for chronic fatigue? There are some tests that will help your doctor to help you. If you do not let her/him know what your life is like, you will not be tested, and you will not be treated.
People with CF are treated with antibiotics and/or antivirals. Many of those with fibromyalgia also have chronic fatigue. It's not just an either/or. (My diagnosis is fibromyalgia and chronic fatigue.)
As you get better and have more energy, you will find that you WANT to get out more. You will spend more time with your elderly friend and make friends with others as you are more and more able to spend time outside your home.
As you feel better physically, you really should find a way to have your agoraphobia addressed. You NEED to have friends. We all do.
You assume that because we have families, that we are not alone. Being a farmwife, there are times during the year when the only time I see my husband is when he finally comes home for dinner. If it isn't the actual fieldwork, it's the equipment that breaks down, or another farmer who needs his help. Believe me, by the time hubby comes home, he has no reserves to spend on comforting me on a bad day.
Besides, the only people who can really understand are those who share this condition. We all have slightly different symptoms at different times. But we are all in pain. We are all horribly fatigued. We are all horribly alone in the cocoon of our illness.
But here, at this site, we are all alike. We are a community.
Oh, Turtle, I love your attitude! Do what you can when you can. Do the things that bring you joy. Run as long as you can. Walk on bad days. (Did you know that you burn just as many calories walking a mile as running a mile? It just takes longer to do that mile.)
But always be aware of your body and the signals it is sending you. If you listen, you will know when to take a break. You'll get a bag boy to lug those milk jugs. You'll schedule shopping trips so that someone at home can help empty the van.
They seem to be bothering a lot of us lately. Here's something that might ease a little bit of the pain and strain.
Remember the position you were told to sleep in during pregnancy? (Or your wife was told to sleep in, Cory?) It was supposed to prevent back and hip pain, but it may also help those knees.
Lay on your side. Have enough pillow power to support your neck and head. Bend your knees, and place a pillow between them. (I use a pillow that separates my knees and my ankles.) This prevents the weight of the top leg from squishing the bottom knee.