I had a very dear friend send me a link to something called spoon theory. For the first time since I became unwell I found the words to explain what I am experiencing. For anyone who has an auto-immune disease (Lupus, Fibromyalgia, MS, Chronic Fatigue, Rheumatoid Arthritis etc.) or knows someone who does please be sure to read this. It will help you to better understand and for those who are experiencing it, you may now have the words to explain to family, friends, co-workers and even help yourself to put things into perspective. I cried for almost an hour after reading this. I hope you find as much value in this as I do. With love and understanding www.butyoudontlooksick.com/the_spoon_theory
In other news:
I saw my family doctor - Dr. B today for the first time since my fibromyalgia diagnosis by the specialist he sent me to Dr.M. He is pleased to hear that they are continuing to look at Lupus and Rheumatoid Arthritis as be believes I could possibly have both and wants them ruled out. They are both from the Arthritis Family as is the Fibromyalgia. I am not liking the 25mg of Amitriptyline Dr.M prescribed last week but Dr.B is really wanting me to be able to tolerate it. He has told me to cut the pill in half and to take it at dinner time vs. bedtime so that I am not hungover in the morning. He wants me to do that for one week and then to add 25mg of Lyrica at 9pm. These medications are to assist with restorative sleep and to manage chronic pain (their original use was to treat chronic depression but those doses are much higher starting at 100mg) and should get rid of the insomnia. There is a third medication Cymbalta that he will look at adding when I see him again in three weeks. He was at a symposium with a Fibromyalgia Doctor from Lavalle, Quebec just a few weeks ago. This doctor claims that Amitriptyline, Lyrica and Cymbalta along with an exercise program (20 minutes of walking or stationary bike daily) for 3 years will CURE Fibromyalgia in 95% of patients. He is the only Doctor who believes there is a cure and claims of 95% success rate in curing Fibromyalgia. As my doctor said there is nothing to lose by trying.
He also increased my thyroid medication to 100mcg's and changed my pain medication to allow me to manage my own dose as needed within a higher daily range. The pain has not been managed at all in the past few weeks at my current dose/range. When the pain is this bad you cannot think of anything other than the pain and thinking is a strong word considering the brain fog that goes with it. Everything you do seems to make it worse. You cannot do anything including sleep when the pain is this bad. I have never imagined that kind of pain existed. When the pain medication is working, it doesn't get rid of the pain rather it puts it on the back burner. It is always there but not in the forefront so that it allows you to be able to think and focus on other things. It is difficult to explain. I can't believe it is almost 8 months living like this. At least I am beginning to get some answers and to understand what is happening to my body and why I have such intense pain from head to toe. I have not had a single pain free day in all of that time. If Fibromyalgia turns out to not be curable then I will not see a pain free day again in this lifetime. That is a sobering thought. I have to believe that there will be a cure if not today then within my lifetime. I keep reminding myself when I feel overwhelmed like this that attitude is more than half the battle. Staying positive really helps!
Wishing for sleep before 3am tonight. Given the way I feel right now it might just happen :) I am tired of being exhausted, not being able to sleep until the wee hours of the morning and then waking up just as exhausted if not more than when I went to bed the night before.
Have a good night everyone! Here is to sleepy nights and rested mornings.
© 2011 Rhonda