desperate for help in NJ [long]
Question:
> I also have widespread pain and many (most?) of > the symptoms associated with Fibromyalgia (pain, > dizziness, confusion, apathy.) … I was at times > diagnosed as having Fibromyalgia, but my > rheumatologist now doubts that, as I don’t seem > to have the trigger points.
Time to get another opinion from another rheumatologist. Let’s face it. If you have the pain and all the other symptoms and SOME of the trigger points then your best bet would be to be treated as if that’s what you have. > I tried everything imaginable with the CPAP, but I got > absolutely no benefit from it. After 3 months of trying, > I gave up on it, as it only seemed to make me sleep worse.
You might want to see a neurologist who specializes in sleep disorders. Or if you have a decent rheumatologist … you might want to try Trazodone. It’s an antidepressant that as an off label (though well established use) helps improve your overall sleep architecture. I have two friends with fribromyalgia that say that between trazodone and proper exercise they’ve been able to reclaim their lives. > On two recent occasiona, I have noticed something like > a seizure while sleeping. I awake with my body shaking, > chest heaving hard trying to breath, but no air coming in > or out.
It’s sounds an awful lot like a severe obstructive event. Did any of the sleep studies mention central or mixed sleep apneas? > It’s really that bad.
Believe me, I understand! > Although I am about 15 pounds overweight, I am > otherwise healthy. Every blood test, EKG, blood > pressure check, etc comes back fine.
Gee! Isn’t that the ‘definition’ of fibromyalgia. > I’ve been to ….
Either find a really good rheumatologist who specializes in fibromyalgia or find a neurologist that’s REALLY good with sleep disorders. Interestingly if they are really doing their job with a sleep study words like "unexplained arousal" during deep sleep and REM sleep will come out. The treatment… Trazodone. It makes a difference – regardless of the reason for the frequent arousals. Hope that helps you in your quest for better health. Regards, =jbf= John B. Fisher
Response:
>I’ve been to general practitioners, neurologists, an allergist, ENT’s, >a psychiatrist, a cardiac specialist, rheumatologists, pulmonologists, >an orthopedic, and even a naturopath. No one has been able to help.
BUT HAVE ANY OF THESE DOCS BEEN BOARD CERTIFIED IN SLEEP DISORDERS? Therein lies the key. Any doctor can refer you to a sleep lab, but most docs just don’t get sleep disorders. I have severe sleep apnea and was misdoagnosed for about 15 years befor I finall found the right doctor who KNEW sleep disorders. You sound as if you have all the classic symptoms of sleep deprivation. Have you been checked for Narcolepsy? The diagnostic test for that is called an MSLT or Multiple Sleep Latency Test. It is a test given in a sleep lab during the day. It records how fast you fall asleep. It also sounds to me as if you do have sleep apnea. Please give the Cpap another try. Some people adjust quickly, it takes others a little longer. I also had the LAUP and it worsened my condition. I have had several pressure increases for my BiPap since. Maybe you need a pressure adjustment with your Cpap. OSA whether mild, moderate or severe is serious business. Just because you feel your osa condition is mild, please know that it is still deadly. There is no cure for sleep apnea. It can be made less life threatening, but you will be living with this disorder the rest of your life! Our osa conditions can change also as the years go by. The scarring from airway surgeries, the natural aging process, weight gain and weight loss all play a factor in our conditions. This is why it is so important to be under the care of a board certified sleep doctor who specializes in sleep disorders. We all need to be reevaluated every few years. I am sending you a link (under separate cover) to accredited sleep centers. You might want to seek the help of a new sleep doc…..the key is board certified in sleep disorders! Be well, Tracy
