SLEEP!!!!!!

[mopinko]

i was going to title this post- it feels so good when you hurt me there, or- what a difference an accurate dx makes.
thanks to warpy, i think i have finally gotten to the bottom of a lifetime of misery. i went to my rheumy, and relayed warpy's suggestion that what was really causing troubling me was fibromyalgia. she proceeded to poke me in the fibro points, and i screamed. wow. doctors have been shaking their heads and shrugging their shoulders at me all my life. this is the first time that one has been able to find the pain, and the first time meds have helped. i am taking trazadone, and sleeping, and feeling like a new person.
so, i have been reading up on fibro, which at it's base is a sleep disorder. i immediately recognized the characteristic sleep pattern- as you are sinking into sleep, you get a jolt of "wake-up", and you have to start over if you can. i vividly recall this cycle from my days of dozing off in school, waking with a jolt, and opening my eyes to see the class staring and laughing.
this is probably the result of a head injury i had at age 6. i got my nose broken playing baseball, and have been subtly screwed up ever since. amazing. the impact of this thing is just crazy to contemplate. ie- i was always one of the weird kids. a big reason is that i was a klutz. i could not jump rope, do a cartwheel, hit a ball, or do anything that required any significant degree of coordination. i was coordinated enough to pass any tests of same. just couldn't do the typical kid stuff. on top of that, it has been a drag on my emotional health that made it hard to cope with that fallout. crazy.
and here is the really crazy part of this story- when my sleep started to get better, and i saw how much of a difference good sleep was making, i looked around at my family. the first thing i saw was that my hubby, with whom i had been having a TERRIBLE time, was depressed and about to have a stroke or something. he has very bad sleep apnea, and was twitching like a fish in a boat all night. i went out an got him one of those foam contour pillows, raised the head of the bed, blacked out the windows, turned up the air, and he is sleeping like a baby. HE IS A NEW MAN!!!
then, i looked at my kids. all 5 of my kids have sleep problems!! all different! my kid who has a dx of bipolar, and has been complaining for years of stomach and headaches, coincidently just found out that she has a deviated septum, like her dad.
another kid has allergy related snoring. he has chronic sore throats, and is cranky and hard to wake.
a third kid has similar pain and snoring.
another kid has chron's disease, and her acid reflux is messing with her sleep.
the last kid is the hardest. an emotionally fragile genius who has a non 24 hour clock. when he was in school, trying to exist in regular time nearly drove him over the edge. he is better now that he dropped out, and can sleep when he needs to. but he is still skating on the edge.
so the first 4 have had their beds and pillows changed, are sleeping better and feeling much better. the last one is looking around, and thinking maybe he might go along with getting a sleep study, something i have been trying to tell HIS doctors forever. this will take a little while to happen.
but man! i have a whole new life, here!

[REP]

1. Sleep Apnea CANNOT Be Treated With a Pillow!!!

Please please please please please do not risk the life of someone with sleep apnea or even suspected sleep apnea by just getting a new pillow. Sleep apnea is an extremely dangerous disorder that can cause death by stroke or heart attack, and can only be treated by xPAP (CPAP or BiPAP) or by tracheostomy in severe cases that don't respond to xPAP.

Sleep apnea can be diagnosed in-home with a pulse oximetry unit. A monitor is worn on the finger during sleep, and the monitior is attached by a long wire to a machine that records apnea and hypoxia. This is great news for people who may not be able to afford the overnight testing in a sleep lab. Most insurance plans with Durable Medical Equipment coverage will cover the xPAP and Medicare will cover I think 80% of the cost.

Snoring is not the same as sleep apnea, though one of the symptoms of sleep apnea is very loud snoring. Other symptoms can include: gagging and/or choking during sleep; frequent awakenings during sleep; frequent urination at night; excessive daytime sleepiness; nightsweats. In addition to death from heart attack or stroke, untreated sleep apnea contributes to automobile accidents; has been linked to proteinuria, an serious kidney problem; permanent damage to short-term memory; and disability from stroke.

And don't think that just older, heavier men have sleep apnea. I began having severe symptoms in my 20s but was told I was "too young, too thin and too female" to have sleep apnea. When I was finally seen by a competent doctor, I was indeed found to have severe sleep apnea, with the worst oxygen saturation rate that clinic had seen.

[mopinko]

2. it can help

adjusting the sleeping posture can keep the airway open and prevent apnea. i do hope that he will see a sleep specialist when he feels better and is in his right mind. he still has a little hitch in his breathing, but mostly he is sleeping like a baby.
he absolutley does have apnea, tho. i have been listening to him struggle to breathe for a long time, sometimes stopping for 30 seconds and more. he had been thrashing around so much lately that the blankets were on the floor every morning. i have been nagging him about this for a long time. he does not want to sleep with a mask on. but i had a real laugh at him about it the other day. he works with a guy who is the typical victim. he was dx'ed after going to the er with chest pains. he couldn't get used to the mask. i asked him the other day- how's don? he had a stroke of some sort, and can't get out of bed. has been sick since january. yada yada. i said "oh, that's better than sleeping with a mask!"
what he really needs, tho, is a nose job. he has a deviated septum.

[REP]

7. I Hope for His Sake He Does Not Have Apnea

Pillows cannot treat sleep apnea. Ask any doctor and s/he will tell you that. Having sleep apnea and refusing to use an xPAP is like playing Russian Roulette.

Snoring is not apnea. Sleep apnea can be diagnosed in a sleep lab or with a pulse oximetry unit.

[mopinko]

8. sounds like you need a nap

jeez

[REP]

9. Sounds Like Someone Has "Fibro-Fog"

I just hope you get the help you both need. Good luck to you!

[mopinko]

10. really

what is your problem?

[REP]

11. Wising You Well = Problem?

Nonetheless, I do hope you both get the help you need, and wish you both well.

[Sgent]

16. A 24 hr pulse-ox

is not a diagnostic standard. It has a high rate of false negatives (and false positives for that matter), and although it can be useful, is not exclusionary. If a clinical picture suggests apnea, a sleep center study is the only way to rule it in or out definitively.

[Warpy]

3. I'm glad the doc was able to diagnose you

and that the meds are helping. Docs are only now beginning to realize that FMS is a real disease that wrecks peoples' lives and needs treatment. I'm glad your rheumatologist was able to perform the exam and nail it down, then prescribe an appropriate med.

Sleep apnea is another matter and can be life threatening. If you hear someone snore then stop breathing during the night, get him/her to a sleep specialist. The most effective treatment is an appliance to keep the airway open at night.

[mopinko]

4. believe me i have tried

i have nagged this guy forever. he does not want to wear a mask to bed. he is a putz. he has been talking about getting his nose fixed. he was thinking about doing it after the first of the year when his sick days reset. but, i think that he will be a little more rational in the future. the pillows, etc, are doing wonders.

i am seeing a neurologist who is a sleep specialist, and i think i will end up with half the family following me over there.

thanks so much to you, warpy, for pointing me in the right direction. this not only explains my current situation, including many things i thought were unrelated, but a lifetime of funny looks from doctors. oy.

[DemBones DemBones]

5. I have FM, too, and it's terrible. My rheumy told me that "they"

have now found than brain scans show differences in our brains and the brains of people w/o FM. Probably all due to sleep loss!

I don't know if it's an FM trait, but I was a klutzy kid, too. Never broke my nose, but did have a concussion when I was 9. I'm not sure if I was klutzier post-concussion; I know part of my problem was a congenital visual defect that seriously affects my depth perception. An opthalmologist told me my depth perception was almost entirely learned, not real -- try catching a ball with no depth perception!

Glad you got diagnosed and are feeling better.

[mopinko]

6. the way it was explained to me.

it is kinda like a short circuit. occasionally, when drifting off to sleep, or when descending into deeper sleep, you get a short burst of "wake up". this disrupts stage 4 sleep, and also makes it hard to get to sleep. this comforms to my experience. especially trying to nap, i will be almost asleep, then zap. a lot of times i physically jump. one reason i know this started back with the broken nose is that i used to dose off in school, then jump, and make a racket. i even fell off my chair a couple of times.
i will let you all know what the neurologist has to say. (july 18th) my rheumy didn't explain any of this to me. i tracked it down myself. man, i am so sick of doctors.
do everything you can to get the best possible sleep. i really was able to do a lot of little things that made their magic pills work better. i feel so much better.

[Democracy White]

12. I was trying to take a nap today

and I had the jumping thing and also my legs were twitching. I have FM and the muscle relaxant that my rheumy gave me doesn't seem to be helping. Maybe I could get my PCP to up dose it or something.

I had a hard time sleeping last night, my CPAP machine (I have sleep hypopnea, not apnea) isn't working or the plug to it is damaged. Also early this morning I had shooting pains going down my legs and my right inner thigh is inflamed.

*sigh* Never a day goes by that I don't feel good. My sister has remarked that everytime I go to her house I always have something to complain about. Well it's the truth!! One part of my body is always hurting. Plus this 95 degrees weather and humidity in Michigan is not helping.

I'm in Fibro-Fog

Dee

[mopinko]

13. ask for trazadone, or elevil

i cannot believe the difference just 25 mg of trazadone is making for me. one thing that is really bugging me about docs and all, i that this disease probably should not be treated by rheumies. it is not an autoimmune thing. it is a sleep thing, and people should see a sleep doc or neurologist for it.
i "referred" myself to one, and will report back after i see him. one of the best drugs that i have been on was neutontin. but it only helped for a while. the rheumy couldn't figure out why (i didn't have a fibro dx at the time, but sure freaking should have). but knowing what i know now about fibro, that it has to do with pain chemistry, i think all the pain killers i was taking were screwing it up. i think a neurologist would have figured this out, but the rheumy just gave me that "dumb doc shrug"
i am thinking i would like to try that drug, or some other seizure type med, cuz from what i understand, that is basically what this is.

[Warpy]

14. Rheumies are the specialists in fibro

simply because fibro is associated with so many auto immune diseases.

[mopinko]

15. i know

i think they should dx and refer. at least where sleep specialists are available. i will let you know if i still think that after i see one.

[XemaSab]

17. Elavil

gives me a VERY good night's sleep, but I feel too mellow the next day to really do much and be productive.

[u4ic]

18. I took the lowest dose of elavil

and couldn't wake up for 2 days. Just a bit of a reaction...lol.

The trazadone gave me such horrible nausea that I had to give up on it.

I take imovane and tryptophan for sleep...imovane isn't available in the US. Imovane is short acting, so it puts me to sleep, and the tryptophan keeps me there. I've been taking it for a few year, and have found the level thats ideal for me. I'll probably have to take it for the rest of my life, but I don't want to go back to being as sick as I was when I was still experimenting with sleep meds and was in such horrible condition.

[mopinko]

19. you have to make up your deficit before you feel better.

it takes a minimum of a week, usually 2 to start to feel better. it takes a month of good sleep to really make up for a long term sleep deficit. so your sleepiness was not a side effect of the elevil, but proof that it was doing it's job.
the first couple of weeks can be awful. but believe you me, i am coming out on the other side here, and i am feeling so good that it is scaring my family. if you can take a week off from work and whatever, and get caught up, that is the best. trying to function during that period is VERY hard.

[u4ic]

21. That wasn't the problem

it was a reaction to the meds, as many with FM are hypersensitive to meds. It's actually a common side effect.

I was taking the imovane and tryptophan and sleeping ok when my new doctor, concerned about me taking them every day, wanted to switch me to low dose antidepressants for sleep and pain control. After my reaction, the elavil was out, trazadone - I had many side effects from, and after about 6 months, I gave it up and went back to my previous combination. It's been the best for me.

[mopinko]

22. been down that road

many many paradoxical reactions in my life.

[u4ic]

23. Thankfully

I have a better doctor now, one who understands that hard and fast rules don't apply to me.

I've always said that this (I have CFIDS as well) is the perfect illness for those who get bored easily. lol

[mopinko]

20. things that helped us

hubby's apnea and my fibro were tied together. so if you sleep with a partner who has sleep trouble, you have to fix both. but also, really blacking out the windows and cranking up the air at night helped a LOT!!! elevating the head of the bed, snorer's pillows, and those nose strip things have my hubby sleeping like a baby. seriously.
there is so much you can do with just simple sleep hygiene.