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I first heard of this disease in July 1993, I had been having muscle and a burning firey sort of nerve pain and a lot of fatigue. I had no ideas why other than maybe I was overdoing and maybe my thyroid medication needed adjustment. However, for a month, it got worse and finally I was taken to the hospital due to pain that was so intense I was screaming and crying.
They gave me some sort of injection then ordered bed rest for a week and put me on Benadryl. They then me to see my regular doctor. From there, he did some tests.
"You have Fibromyalgia."
"Fibro-what? What is that?"
So he handed me a pamphlet and explained it was sort of like arthritis but of the muscles.
I was a very organized person still am pretty much but don't let some things bother me as much. But I was actually a clean-a-holic. I had things washed and put away hardly before they were done being used. Picked up and tidied constantly. A place for everything and everything in its place all the time when not in use. That was me. Was being the operative word. I then go books on Fibromyalgia and read about it. I took meds that did not seem to help and found out later what I thought was supposed to be to help with pain. Was for depression which made me mad because I was NOT depressed. I flushed the rest of them. Have not had that stuff since.
I had to learn to pace myself and not overdo it. I found out what it means to have Fibro-Freeze. That is when your muscles seize up from pain and fatigue and you literally cannot move due to the intense pain. It only lasts for a couple of minutes but it is totally frightening. The first time this happened was when I was shopping at K-Mart. I was feeling fine, A little tired but hubby and I were shopping and I was almost done. Then I got this intense pain and I tried to move to walk and literally was paralyzed for about 5 minutes. I could not move. I could talk but could not walk or move forward or anything. I was totally scared and didn't know what was happening. Finally, I was able to move and we quickly finished shopping. I was totally exhausted from the experience and only wanted to go home and go to sleep.
It happened again a couple of weeks later when we had taken a car trip of about 150 miles to see our son graduate from Central Washington University. It is very hard to explain what happens but one minute your moving and the next you cannot move at all. I made an appointment to see my doctor and learned about Fibro-Freeze, caused by stress, fatigue, and unknown factors.
Over the years I have learned of ways to cope and deal with it. To pace myself and not overdo it. If need the dishes can wait 24 hours and so can the laundry. I learned to rest when I feel the need. Hot soaking baths help lots. Some foods help more than others. Herbs and Vitamins help as well. I learned that it goes into "remission" and there are weeks and months you have little or no symptoms at all. Then when you get them they come back with a vengeance.
Well, I thought I was doing pretty good because I had not had any symptoms, or problems and not a lot of pain and or fatigue for over two years Then it came back last week when the weather began turning cold and has been getting worse. Resting helps. Pacing myself, having others do things I cannot do right now, Hot baths help. Reducing stress. Exercise in moderation helps. I have been overdoing the last two weeks. My husband is giving me body massages with warm scented lavender oil which helps to relax my muscles and nerves and again as that helps a lot.
I know it will ease up again and get better as the warmer weather returns. Another thing that triggers Fibro Flare-ups is unsettled weather, hot, cold, fluctuations, wet and rainy. Ice and snow. It hurts when someone bumps a trigger point or sores spots. But over the years I have learned a lot of things that do help and you learn to live with it. Some people do well with prescription medications and others like me use more alternative methods that equally work.
Living with Fibromyalgia is something many people have to cope with daily it is real and it is disabling and it is not a disability you can see. There is still research going on as to why people get this illness and since I first learned I have it a lot of strides have been made for people with this disease to help them cope with it and to educate the greater public about it. Maybe one day as with many diseases they will find a cure. Meanwhile, if you know someone who has this illness have patience and compassion.
There are many support groups now for this illness and books on it as well. You do not have to be alone or feel alone and learning what works and does now work for you is a personal and your family needs to learn it is real and help you. Once you learn what to do, and how to cope most people can lead a fairly normal life.