I recognized that letter. I have that book. I would recommend it. It's definitely worth reading especially for the newly diagnosed and those who are interested in learning more about the disease.
The only negative issue I have with Fibro books is that there is so much new information coming out that by the time something is published, a lot of the content is "old news." I am always looking to see the date when the book was published. If it is over two years old or more I usually won't purchase it unless someone else recommends it to me.
-Dusty
Hi All,
I went to a Dr I Jon Russell who is director of clinical research at University of Texas who has researched Substance P which is elevated in CSF (cerebral spinal fluid) of FM patients but only if primary is FM. Secondary FMS when associated with rheumatoid arthritis is less elevated. He has co-written a book "The Fibromyalgia Help Book" a "Practical Guide to Living Better with Fibromyalgia" which I found very helpful. I did have to order it online and I think it was approx $20. He also has a interview that you can pull up, I will have to get that info for you later.
This is a little off the track but I wanted to let you know that there were 2 articles I ran across on other sites that are excellent to explain to others what we go through. I know it is so frustrating when people say Wow you look good but they cant see on the inside. the first one is Love Letter to Normals: www.fibromyalgiatreatment.com/letter_to_normals.htm I think the same site has "The Spoon Theory" a personal story by Christine Miserandino about living with a disability
Had not heard of the Substance P thing. Will check it out. Thanks for the input.
Hi!
My Neurophsycologist has me on to different anti depressants and this is for the depression and FMS. He explained this to me about how this works. I understood it, I don't want to explain because I may not explain this to you correctly. Some of you may already know what I am speaking of.
I have not heard of Cycloset being used to treat Fibro. I'd be interested to hear from any one who has. It's a medication for Diabetes. Although, from what I've read, the medication raises dopamine in the brain. I suppose it's not too far from reality to think that it's not a possible option for Fibromyalgia since Neurontin is used off label for many things including Fibromyalgia and was once targeted specifically for Diabetic neuropathy.
As far as the neurotransmitter and the cerebral and synovial fluid theory you speak of- are you possibly referencing the ideas about the Substance P in the brain and the theories surrounding the oversensitive central nervous system (CNS)? If you search the internet you can find some reliable sources that talk about this topic. I have posted a couple sources below that I like personally, but there are many more out there.
http://arthritis.about.com/cs/fms/a/fmscause.htm
http://en.wikipedia.org/wiki/Fibromyalgia