My words tonight will be 'off topic' as something happened with me this past week which was deeply upsetting. I am sharing this, Martha, as I imagine many others have been affected, and I remember your frustration at being seen as a 'head case' by some doctors.
A big thing in the U.S. at present is the opioid crisis, with the pharma companies being painted as the bad guys. But as I wrote in a comment to a major newspaper recently, there is virtually no mention of the patients who are using an opioid drug responsibly, such as someone like myself, who takes low doses of a medication that was described to me by my pharmacy consultant as low risk, and 'mild'. What of the millions of people in our country who need medication to help their lives be livable, with talk from others I know who are simply being taken off pain medication with virtually no advance warning; and importantly, no real practical substitute given to help relieve pain.
This in the mind of those who are evidently waging a 'new war on drugs' is having a real life effect on people who, like me, have used their medications carefully, never abused them. In my case of several years, I am still on the same dosage I was at the beginning and have never used a single pill more than what has been prescribed. Certainly there are people who ask for ever higher doses of drugs and do abuse them, but there are many people who use their medications faithfully and responsibly.
So, I go to a new doctor at the 'pain clinic' who is recommending 'physical therapy', even after I told him that I read an article related to medical research which indicates that for some patients with fibromyalgia, that increased physical activity can actually cause increases of pain for some patients. And that too much physical activity causes a lot of additional pain for me.
I do fine with moderate gentle walking. He also is talking about eventually reducing the one tiny pill I take at bedtime for sleep. The latter not being even an opioid, but potentially considered 'addictive' even though I have been on it at the same dose for several years, and would not even take any medication if I did not need it to help relieve pain and be able to sleep for several hours. I do not take medication for 'fun' and I certainly have no inclination to addiction.
I asked this doctor what I would do without my medication for sleep, and remarkably his idea is that if I get enough physical exercise, then I will be tired enough to go to sleep! I am plenty tired on many nights when I go to sleep.
I wonder how many of these doctors have any inkling what having chronic illness feels like, what it feels like to have pain on a day to day basis for extended periods of time.
Tim, as I read your comment, I felt my anger rise. Who are these doctors who have no training in chronic diseases? The idea of telling a fibro/cfs patient to get more exercise then they'll be tired enough to sleep is just plain ignorant. I hope that you're getting a new doctor pronto! Keep us posted.
Thank you Martha for your support and understanding.