I have had lifelong problems being heard about this. Although educated and come across as capable, my dirty little secret has been the amount of time I have to sleep in order to present the more attractive side to the world. Then, I married and had a baby, assuming there must be some way I could do what "we all" do. But I should have known what anything involving sleep deprivation would do: make swiss cheese of my brain. Then the pain hit and made 8 years of this past decade 24-7 misery .Although I did my best to act positive, esp. with my baby, I hated life and myself, felt doomed. For the life of me I couldn't organize my thoughts, easily manipulated by family members over use of my credit. I have improved the past few years but everyone from doctors to Social Security wants to say: "End of story." My attempts to re-enter the workforce have ended in failure. I only have about 20 useable hours a week, and it takes much warm water pool therapy, rest, and meds to keep them. My life is a total mess; my only hope is continuing school, but with the financial floor about to give out there are too many other tasks! How can I help doctors and Social Security understand the difference between cured and improved, and is there anything else I can do about this? Thanks!
Q: Chronic pain patient, improved, written off as cured. Not true. Help doctors?
Has anyone suggested you might have fibromyalgia? Many of your symptoms - poor sleep, needing lots of sleep, pain, trouble concentrating, etc. really smack of fibromyalgia or FM. FM is a hypersensitivity disorder that causes widespread pain, fatigue, poor sleep, problems thinking etc. Its treated differently from most other 'pain disorder' partially because its not just a 'pain disorder' at all but a central nervous system disorder that effects many aspects of ones life. It often goes undiagnosed.
http://www.healthcentral.com/chronic-pain/fibromyalgia.html
Health Central has a good FM section. If you do end up having it there are some good support groups such as the NFA you might want to check out.
Good luck. You deserve better.
After reading what you wrote, I too was thinking you could have fibromyalgia. Have the doctors found that to be true? My sister in law has it and it's very hard to dignose and she has had a hard time finding a good doctor. She goes to a pain specialist and he gives her shots but for the life of me I can't remember what they are. It seems to be helpig so far. Have you had any relief? I hope you're doing better! Keep us posted:)
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