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Sleep Study Results


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#1 annkd

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Posted 26 January 2007 - 05:53 AM

I had my evaluation read to me yesterday at the sleep study center and the neurolgist said I did not have sleep apnea (which I am not surprised to here). He did say that I slept very light and that my deepest sleep was around the 6 and 7 am hours (just when I need to get up....husband gets ready for work, dog has to be fed, etc.). So I am tired all day. He made some sugggestions but without going into great detail (because most of you will understand) I can't imagine being able to follow these ideas. Such as - get out of bed and do something until you feel sleepy. Great idea, but when you are in pain and your raynaud's is in full swing, it is impossible to get out of bed and "do something". He suggested doing puzzles, or other mind activity games. Is he kidding? I reminded him several times I have scleroderma, fibro, etc. and it just didn't seem to register. Ugh. I am fully aware that my pain cuases to wake often in the night and may I should be going another route. Pain management specialist? What do you think? I would really appreciate any input. Frustrated in Northern California - Ann

#2 Sweet

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Posted 26 January 2007 - 06:51 AM

Hi Ann,

Oh I can relate to this all to well!!! I have not had a sleep study, but I rarely get good restorative sleep at night. And, like you my best sleeping time, is the early morning, mostly between 5-8 for me. I have a friend who just doesn't get it, like the person you were talking about - she says "You just lay there??" "What do you do?" I try to tell her, I just try to get comfortable, flip flop a lot, get up take more pain meds, sometimes take a sleeping pill, sometimes, I want to put a pillow over my husbands face for snoring. But I'm TOO TIRED TO GET UP AND DO ANYTHING!! I'M EXHUASTED. She doesn't understand. I have to admit that it's amazing to me as well, when I realize I've laid there for 6 straight hours, the time actually goes by fast.

You asked for ideas, well a pain management consult would be a great idea if the reason you are not sleeping is primarily due to pain. A friend on another board recommended I try an over the counter pain reliever that was an extended release and I have to say that it has helped. If you want the name let me know and I'll send you a PM. Have you tried sleeping on a full length heating pad? That helps me at times, also taking a warm bath before I go to bed, make sure you have no electronic devices on in your room such as TV or Computer, make it as peaceful as you can.

Not sure if anything of this helps. Some of it works for me sometimes and at other times it does nothing.... it's the most frustrating thing I think I've ever had to deal with.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Piper

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Posted 26 January 2007 - 11:22 AM

Hi Ann & Sweet, I'm right there with you, nights are very bad for me. I dread going to bed. Then when I do wake up I feel like I've been beaten to a pulp.
Ann, I don't think the neurologist was really listening to you. Those suggestions are great for the average person, not one with your medical history. I have the same sleep patterns as you and tend to get my best sleep in the morning. Do you absolutely have to get up with your husband or could he feed the dog for you at that time? I feel you've got to get the sleep when you can get it. I know my husband sometimes makes me feel guilty for "sleeping in" while he has to get up but he's had a good nights sleep. I find a combination of things help me sleep from meds, topical rubs and a heating pad combined. Sometimes none of them help tho. I took a hot bath the other night before bed thinking that would help. It didn't. The whole night I felt like I was a tube of toothpaste being squeezed in the middle, about to explode somewhere. Really weird.
I think a pain specialist would be a good idea for you to explore, it can't hurt.
Sweet, I hope you are getting some sleep now hon. I know we've talked about it before and I really do sympathize with you.
Take care,
Hugs, Piper

#4 annkd

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Posted 26 January 2007 - 02:47 PM

Hi Piper - thanks for the reply. I would love to be able to sleep through the morning comings and goings, but it just isn't happening for me (for a multitude of reasons). I have been thinking all day about writing a letter to this doctor and lettiing him know what the appointment and sleep study experiment meant to me. I don;t know if this doctor will be interested in what I have to say but I wonder if it is worth a try. What do you think? I keep running the tape over and over in my head and getting very upset. Not good for tonight's sleep!! What information is not being given to these doctors? Is this condition really that isolated? Thanks!!! - Ann

#5 Sweet

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Posted 26 January 2007 - 03:50 PM

Hi Ann,

Your email went to Heidi for some reason but she passed it my way. I emailed you, so let me know if you got it.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 emmie

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Posted 26 January 2007 - 08:19 PM

Hi sleepless sclero girls,

I am one of you! I had a sleep study done as well. I don't have sleep apnea, but it showed lots of hypopneas....and said I have very poor sleep efficiency. Duh! It recommended I see a sleep specialist. Well, that came out at the same time I was diagnosed with the Hashimoto's encephalopathy. I asked the neuro who dxed that if I should see the sleep neuro; he said not necessary. The sleep problems were most likely related to the enceph. But he wouldn't prescribe anything for the sleep problems because of my other meds (I am on 2 anti-seizure meds; the seizures came on due to the encephalopathy as well.) However, he was willing to prescribe Provigil a drug given to narcoleptics to help them stay awake. I said no thanks. I figure if I'm not sleeping at night, I do need to sleep some time to get some kind of restorative sleep--hopefully--at some point in the day. Don't get why he would prescribe that but not a sleep aid.

Pam, I'd be glad if you would email me the OTC pain reliever tht has helped you. I have tried all of the suggestions you guys listed plus I plug in my I-pod that has all my relaxation music on it for all night. And it is amazing how much time can pass....

one other thing for horrific snoring husbands: the tempurpedic pillows designed for neck support. My husband got me one for holiday (I have cervical degenerative disk disease). I was having a tough time getting used to it. I asked him if he wanted to try it (I had read that it helped snoring :-) Honest to goodness, he sounds like a cross between a duck and a foghorn. Anyway, the gift to me has turned out to be a better gift since HE is using it! So, maybe try that for snoring husbands!

xoxo emmie, Sleepless in Chicagoland

#7 Piper

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Posted 27 January 2007 - 07:58 AM

Hi Ann, Don't let this upset you hon. Just forge onward, there's help for you out there. I think a pain Dr. would be more intuned with your problems. The neuro obviously isn't up to snuff on sleep probs caused by pain. You could send him a letter but I don't know how much good it would do. I would definitely tell your rheumatologist or G.P tho the next time you are there about how useless his suggestions were.
Take care,
Hugs, Piper

#8 Sweet

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Posted 29 January 2007 - 09:12 AM

Hey Pipes,

I do sleep better than I used to, thanks to the OTC pain reliever you shared with me. I certainly could sleep better though!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)