Sue describes the fibromyalgia symptoms she experienced and shares the treatment for her condition.
The symptoms I was experiencing from fibromyalgia were extreme pain. There’s I believe 18 pressure points in the body that they use to diagnose fibromyalgia once they have ruled out other things and the doctor would literally touch these different points and a normal person, if you touch them like this there’s nothing, but if a person who has fibromyalgia it feels like the worst pain that you can imagine and I tested positive for I believe 11 out of the 18 points. So that was a confirmation. I was always in tremendous pain, pretty much all over my body.
Another thing that was really difficult was the brain fog. I would go to fibromyalgia meetings and that’s where I learned about the language of that and fibro fog was something where you just couldn’t get the words out. You knew what you wanted to say, but the words literally would not come out of your mouth. I was always so exhausted. I spent most of my time in bed because I had absolutely no energy to do anything.
I would, on days that I thought I would wake up and I would feel okay, I would call up girlfriends, I would make plans to do things and then after a couple of hours I’d have to call and cancel and say, “You know what, I am really not up to it,” and I did lose a lot of girlfriends during that time because some people just didn’t understand. It’s not something that you see. You look fine so people have a really hard time believing that you are as sick as you say you are.
So I was in bed a lot. I was depressed; horribly depressed. I had no social life. My husband and I couldn’t go out and do things because I was always too exhausted to do anything and sometimes I would get injections into my muscles to try to relieve the pain. I would get a variety of different painkillers and antidepressants; it ran the gamut.
It wasn’t until I went to the fibromyalgia rehabilitation clinic at Cedars-Sinai in LA that I finally did find some relief. At this point I had been in bed for the better part of seven years and I realized that it was most of my 40s and this was not a life, and I had tried everything in Phoenix, in the Phoenix area that I could think of, all the referrals that I had, and I found out that at the fibromyalgia rehabilitation clinic they had a program and it was twice a week for five or six weeks, and I could actually move there and do that, but it wasn’t really a great option or we could fly back and forth and that was always horrible trying to travel with fibromyalgia and we did. And I went to the fibromyalgia rehabilitation clinic.
They agreed to see me for an assessment and it was over two or three days I believe, the assessment part was. I met with the rheumatologist that headed up the program; I believe his name was Dr. Stuart Silverman. I met with physical therapists. I met with psychotherapists. They put you through all different types of mental and physical and emotional testing to find out what the degree is of what you are suffering from.
And I knew that I was pretty bad because I had been to this doctor in Phoenix that had me on 17 different medications, and there were uppers and there were downers and there was anything, but when you are that sick you are so desperate that you just take anything that anybody tells you in the hopes that something is going to work.
And when Dr. Silverman told me, after the assessment was done, that I had lost 80% of my physical and cognitive abilities I was blown away. I knew I was sick. I had no idea I was that sick. And a couple of things that he said; one is that I had to move my body and this is really hard for people with fibromyalgia because you are in so much pain and you are so exhausted that the last thing that you could even imagine is moving your body.
They say do exercise, and what he said to me is, “Get in a swimming pool and I don’t care if you just stand there and move your arms around and twirl around lightly in the pool. You’ve got to get into the pool everyday and just do a little bit everyday and a little bit more and a little bit more,” and he had me doing some physical therapy.
So I would go back there every couple of weeks. I had a fabulous physical therapist there who worked with me. I had a fabulous psychiatrist that worked with me, and they were all trying to coordinate the appropriate meds that I should be on to minimize it as much as possible but to do the exercise and the physical therapy with it as well.
That was when I decided to run away from home and because the stress had gotten to me. I was a huge stress puppy in those days and part of it was due to my marriage. I was very stressed out. My husband was not… he didn’t go along with what the doctors had said and he just thought that I should be able to get up and do things.