I have discovered that I am on my own personal health research study now that I have some idea of what I am dealing with via my four different rheumatology best guesses on what my autoimmune disease is up to on the day I visit a doctor. I have delved deeply into some scientific papers, reading words I never knew existed and have my nose buried into my computer's health dictionary.
And so far, the most interesting issue is fatigue. I thought fatigue was a symptom of my disease process, and its usually listed as the number one symptom on most sites. But if I am following this line of research properly, fatigue is acquired because autoimmune actually "seizes" you out of deep sleep, not actually waking you up, but disrupts your healing sleep patterns, and cause the "fatigue".
So, I am working with my primary on pain control, which I am only using for sleep. And I have to admit, I seem to be doing much better with good sleep, and I had always thought I was getting good sleep.
This is all on a subconscious, asleep level, and you might not even be aware that your disease is kicking your sleep patterns out of whack while you are sleeping. Sounds like a good move title.
Oh, I'm aware that my illness is causing sleep disturbances. When I roll over and the movement jars the swollen joints in my hands or my hip pain wakes me. Instead of pain control, which seems difficult for me to achieve, I was wondering about sleeping pills. You know the one with the Lunar Moth in its commercials. Would that be as effective?
Tomorrow I go to a different rheumatology and as usual I'm scared. Doctors have just been long suffering bills to me and of no use what so ever. I'm crossing my fingers (best I can) that this one will be different. A lady with lupus and another with RA have recommended this M.D. to me. I have a lot to ask of him a diagnosis, excuse from jury duty and meds so I can at least have a peaceful sleep. Any advise?
ogreat - the one thing I find the most astonishing in here as a common factor (except for the lucky ones), is our fear of a new rheumatologist because of all the histories we have of being treated badly or not believed. Good luck, and just take a deep breath and look them straight in the eye and tell them the truth, and cross your fingers. I totally understand, I have blown through four rheumatologists already, and my latest has lasted a year, a record for me. When I started this thread about fatigue I should have said somewhere that this wouldn't apply to the pain that hits you during sleep that wakes you up totally or the pain that won't let you fall asleep. I have that too. But most nights I sleep fairly well, but wake up feeling tired and fatigued all day and couldn't understand why if I "thought I had a good night's sleep". This research has answered that question, for me. Autoimmune is relentless I am discovering, and just because you are asleep doesn't mean its not having a continuous party going on inside you. On the herb side of things, I found valerian root (what valium was based on) helps for sleep, but I overused it for too long and too much before I was diagnosed, and cannot tolerate it any longer. Take care and let us know how your appointment goes today. Take care Cathy Justsay: What an interesting post and so informative. Thanks for sharing. I guess now I know why the RD asked how I'm sleeping. Funny, he asks VERY few questions but he asked that. This is more valuable information and information is power. Thanks again! I love these boards!
I too have become my own personal research assistant. I also challenge the doctor on many occasions. It is best to stick with a specialist or visit a clinic which specializes in your particular complaint(s) as much as possible. If your doctor does not listen or spend time with you or is not available -- kick him to the curb-- and find a new one...
Now, after I'm healing, I'm tired all the time. Not fatigued, but tired, and I can sleep 8 - 9 hours a night - like my body is trying to catch up or something. Pip
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