Here's my last three years worth of medical info that may provide some insight as to what's going on. I didn't post previously because it was so extensive. I wouldn't read too much into it right now since the pressure changes that you all have helped me with seem to be slowly making everything better. First thing is to get the cpap therapy figured out. I'm still waking a lot, but have been feeling better and more alert during the day. Starting to have more energy. I'll post some current cpap data soon.
44 year old male. Still searching for answers. Over the last three years, many doctors, many tests, many diagnoses, many treatments and virtually no results until this last few weeks.
I found trying to explain all this to a doctor makes their eyes glaze over. They have a hard time figuring out where to start and what to do. I'm sure it will do
the same for all of you.
-Occasional light headiness, dizziness, racing heart upon standing, start to black out. I suspect this is a blood pressure problem.
-Limbs are always going numb. Sometimes during the day, but especially when I sleep. Often wake up with both arms dead asleep, even the one I'm not laying
on. Sometimes it's one whole side of my body. It is much worse when the limb is elevated above the heart.
-Sweating, hot flashes, racing heart. Mostly at night, but occasionally during the day.
-Waking up many times through the night. Like every hour. Sometimes more or less.
-Insomnia. A lot of this was due to work stress. Sleep deprivation seemed to make it worse also.
-Takes a very long time to get going in the morning. "Feeling like I have been run over by a truck". Here that one often on this forum.
-Frequent morning headaches.
-Forgetfulness, reduced cognitive ability/slow thought process from what was normal.
-Most days angry, frustrated, impatient, irritable about very insignificant things. Everything is a burden.
-Always very tired throughout the day. Adrenalin seems to kick in during the evening from being overtired and can't get to sleep.
-Muscle weakness, tingling, throbbing, twitching, shooting pains in any muscle at any time. Seems to move around a lot.
-Muscles and joints ache bad. Entire body aches severely right down to the bones. Even skin hurts at times.
-All muscles in body feel tense 24/7, sometimes to the point of cramping and very rarely ever feel relaxed enough to get into a deep sleep.
-All aches and pains are temporally relieved buy moving the body. I never take a break throughout the day, because my body starts to ache bad. Being
stationary for 20-30 minutes is torture. Driving for 1/2 hour hurts real bad. Also get real tired and yawn continually with a short break, body starts to shut
-Entire spine hurts extremely bad for a little while after chiropractic adjustment. Chiropractor has seen this only a couple times in his career and seems to
think this a nervous system problem.
-Vision is blurred sometimes. Seems to change daily. This could be related to my age. Eye doctor says early 40's is a bad time.
-Shake a lot when trying to use fine motor skills.
Had many tests that I won't go into at this point. Maybe will list them when I get time. It's extensive. I had an electromyography to test my nerves. I don't recommend that test to anyone. It was horrible.
-Sleep apnea twice - both places seemed to have gotten the pressure setting wrong which you all have helped me to understand.
-Fibromyalgia twice - I believe this is a misdiagnoses both times. I had all the symptoms, but they seem to all be going away with better sleep.
-Post lyme disease - recently tested negative both times, but they still diagnosed be with it since I definitely had a circular tick rash along with the flu as a
teenager. This was long before we new anything about lymes. We still don't know much.
-Restless legs syndrome - diagnosed with this in response to my complaint about my entire body feeling restless. Sleep study tests confirmed I don't have
this. Actually one out of three studies said I had minor limb movements, the other two recorded nothing.
-Depression - Who wouldn't be having been very sleep deprived for 4 years and having their entire life go to heck. Not depressed at all when I sleep well,
quite the opposite.
-Anxiety - Definitely had this from being sleep deprived. Seems to be mostly gone now with better sleep.
-Insomnia - Had this real bad a couple years ago. Main causes were work stress and anxiety from sleep deprivation.
-Low on B12 - Still take supplements occasionally. Need to have this checked again.
-Vitamin D deficient - Feel much better taking supplements. Still do this daily. Doc says everyone in the north should probably be taking supplements.
Doctors know for sure I have mild to moderate sleep apnea. They seem focused on a nervous system problem since my entire body is being affected.
-They put me on a whole bunch of drugs for all sorts of things. The antidepressants and nerve pain medications for fibromyalgia made me very ill. Mostly bed
ridden and not able to function. A lot of sleeping pills, which seem to make my apnea worse.
-Had two sleep studies done by two different doctors and labs and both places seem to have gotten the pressure setting wrong on my cpap. I talked to them
many times about how very tired I felt and how many times I woke up and they were not able to help. They mainly told me each time that my cpap was
working right since AHI was under 5 and couldn't do any more for me. One of these doctors diagnosed me with anxiety.
-Had classes on pain management and insomnia at Mayo Clinic. I had an enlightening experience. They basically said each time I was there that
prescription drugs are way out of hand in the USA. They have cured many people by providing informative classes and improved quality of life by weaning
people off all the drugs the doctors are pushing. They stressed using drugs as the last option. Apparently we have a prescription drug problem in the USA
with the companies and doctors being the pushers. They said it will likely take decades to change this way of thinking; drugs being the first step in
treatment; but on the bright side a lot of places are moving in the right direction.
What has worked so far:
-Taking Vitamin D supplements reduced the pain considerably. Noticed a big difference within a few days.
-Found cutting work back to part time and getting as much rest as possible has improved things. Can't continue to work part time forever though.
-Getting a lot of sleep helps with everything. All my symptoms seem to be proportional to the amount of rest and sleep I get. 4-6 hours and I feel horrible. 7-8
hours and I feel bad. 9-10 hours I feel decent. 11-12 hours I feel great and ready to take on the world, almost all symptoms are gone. This tells me that likely
most of my problems are related to sleep deprivation.
I eventually gave up on the doctors and took matters into my hands. Knowing that most everything seems to be sleep related, I looked further into my cpap therapy. Found that I can adjust the pressure on my machine, found free Sleepyhead software to look at my cpap data. A few weeks ago I found this forum and you all are helping me to get my cpap therapy right. So far everything seems to be improving with the proper pressure settings. AHI is below 2 now most nights. I'm starting to feel more alert, my body is aching less, my muscles are starting to relax. My anxiety and depression are mostly gone. Sleep is getting deeper. All symptoms seem to be subsiding. I feel like I'm on the road to recovery. Being more rested I'm able to do more and hope to soon start and exercise program which should help with my blood pressure problems. The doctors are probably right in saying it is a nervous system problem; being that it runs our entire body it makes sense that everything would be out of wack and malfunctioning. Probably all brought on by sleep deprivation from untreated apnea.
Being sleep deprived on a daily basis, my body has not had the time to repair itself for something like four years now. That would likely cause all sorts of problems. I'm still not back to normal, probably because I have not completely resolved my sleep issues. I feel like it is sleep deprivation that is causing most of my problems and it makes sense that it would.
Sorry that was so long winded, but I've been through a lot in three years. Didn't even mention all the tests I had.