gruffgriff
02-02-2002, 12:10 PM
I am new at posting, old at reading. My spouse posts often about our two daughters with fibro but I have a question we have not seen answered. What do the doctors do with the result of a sleep clinic visit?
Our youngest daughter, 18, does not sleep well and suffers from fatigue. The rheumy doc has tried several medications to help her sleep (or more accurately, improve the quality of her sleep) with no results. Now a sleep clinic is on the schedule. What may we expect?
Any info greatly appreciated. Sometimes the doc works on the mushroom theory of patient knowledge.
Our youngest daughter, 18, does not sleep well and suffers from fatigue. The rheumy doc has tried several medications to help her sleep (or more accurately, improve the quality of her sleep) with no results. Now a sleep clinic is on the schedule. What may we expect?
Any info greatly appreciated. Sometimes the doc works on the mushroom theory of patient knowledge.
Sponsor
Allen
02-02-2002, 06:14 PM
Greetings Grif: I've had 2 sleep studies, one at home and the other at the hospital facility. They explain everything thoroughly and while you sleep they monitor your sleeping thru the night. No meds involved and no pain. Many people with Fibro have a sleep disorder which can be treated. Hope the tests are helpful. Al
korken
02-02-2002, 10:58 PM
Hello Grif,
Al said it but here are a few details from ours and what we learned.
First I posted before and it ddn't show for a couple hours so here it is again.
There are a few tests that will DX FMS that all have, so we have been told and read. A sleep study is one.
Our 18 year old son has FMS and will have his study done in a few months. He also has MVP which is another thing that many with FMS have.
I had the 24 hour testing, my husband had the over night and will be repeating that in a few weeks. He also has sleep apnea I should say had till the surgery.
They will put electobs on her head and some on her legs. They put a wire under the noise that checks for breathing problems. The room has an infrared camera that is always on. If she has favorit sleep things like pillows bring them. Snacks to, no caffine.
They check for Alphia waves which is a DX for FMS and CFS. They are only present in normal people while awake with us in our sleep that is why we wake easily at some points and hear all. There is no medication that will stop it at this time. There are 4 stages of sleep 1,2,3 and 4. My husband has no 4th level and almost no 3rd. These are the levels that the body is repaired and restored. This is why my husband is now on disability. Certain meds can't be taken for about 3 weeks before or during the testing they interfer with the results. It is not uncomfortable not too much. The wirers keep you in bed untill they get you unplugged.
They do glue the leads on you sclap and body so no moistuisers. They use nail polish remover to remove the glue but it doesn't get it all out, it takes a few washes.
I asked the center for info and research to read and tech books on the study. You can call and ask for that. My son is 18 so they didn't want us there because he was an adult, but if you daughter says she wants you then go. We wern't allowed in the center at night we will have to drop him off at the door. We did the same with each other. But, a hospital maybe different.
If I can answer any more q's just ask.
Good luck and it doesn't hurt. But, your hair looks like a person getting a highlighting.
------------------
Take care ~Kim & Gary~
Al said it but here are a few details from ours and what we learned.
First I posted before and it ddn't show for a couple hours so here it is again.
There are a few tests that will DX FMS that all have, so we have been told and read. A sleep study is one.
Our 18 year old son has FMS and will have his study done in a few months. He also has MVP which is another thing that many with FMS have.
I had the 24 hour testing, my husband had the over night and will be repeating that in a few weeks. He also has sleep apnea I should say had till the surgery.
They will put electobs on her head and some on her legs. They put a wire under the noise that checks for breathing problems. The room has an infrared camera that is always on. If she has favorit sleep things like pillows bring them. Snacks to, no caffine.
They check for Alphia waves which is a DX for FMS and CFS. They are only present in normal people while awake with us in our sleep that is why we wake easily at some points and hear all. There is no medication that will stop it at this time. There are 4 stages of sleep 1,2,3 and 4. My husband has no 4th level and almost no 3rd. These are the levels that the body is repaired and restored. This is why my husband is now on disability. Certain meds can't be taken for about 3 weeks before or during the testing they interfer with the results. It is not uncomfortable not too much. The wirers keep you in bed untill they get you unplugged.
They do glue the leads on you sclap and body so no moistuisers. They use nail polish remover to remove the glue but it doesn't get it all out, it takes a few washes.
I asked the center for info and research to read and tech books on the study. You can call and ask for that. My son is 18 so they didn't want us there because he was an adult, but if you daughter says she wants you then go. We wern't allowed in the center at night we will have to drop him off at the door. We did the same with each other. But, a hospital maybe different.
If I can answer any more q's just ask.
Good luck and it doesn't hurt. But, your hair looks like a person getting a highlighting.
------------------
Take care ~Kim & Gary~
darlene
02-03-2002, 05:01 AM
Kim - from what I read from your posting are you saying that if a person has FMS they have an abnormal sleep study? The reason I'm asking is that I did have a sleep study and the results were normal. I know I definitely do have FMS so did I misunderstand your message?
Darlene
Darlene
korken
02-03-2002, 12:54 PM
Darlene,
From the papers we have read from the sleep center and the ones posted under links by my name and Cico1212. The info. does seem tobe saying that.
But, we all know that each of us have some symtoms that others don't.
They say that the Alphia waves in sleep are found in FMS prople.
The research says that MVP is found in many with FMS. Our one son that has been tested shows that. None of us have MVP.
We have been told that it was a DX factor and the papers also say that. I guess if there are different types of FMS that maybe why. There is also a post on the types below that some one had posted a while back and I put as it's self. Called R/O tests... Types of FMS..
Have you read these articles yet?
The first study my friend had they said nothing about FMS to her and the second one she had that the FMS doc ordered did state this problem. I guess it is also what they are looking for or asked to look for. Our FMS doc requested the test and the script did say something about FMS. We can't rember what though.
Hope this helps.
------------------
Take care ~Kim & Gary~
From the papers we have read from the sleep center and the ones posted under links by my name and Cico1212. The info. does seem tobe saying that.
But, we all know that each of us have some symtoms that others don't.
They say that the Alphia waves in sleep are found in FMS prople.
The research says that MVP is found in many with FMS. Our one son that has been tested shows that. None of us have MVP.
We have been told that it was a DX factor and the papers also say that. I guess if there are different types of FMS that maybe why. There is also a post on the types below that some one had posted a while back and I put as it's self. Called R/O tests... Types of FMS..
Have you read these articles yet?
The first study my friend had they said nothing about FMS to her and the second one she had that the FMS doc ordered did state this problem. I guess it is also what they are looking for or asked to look for. Our FMS doc requested the test and the script did say something about FMS. We can't rember what though.
Hope this helps.
------------------
Take care ~Kim & Gary~
korken
02-03-2002, 01:08 PM
Darlene,
The papers and other articals they told us to read (we asked for this info. on FMS and sleep) the sleep center gave us did to. Our Script had FMS on it. Did yours? Maybe they didn't report that but. I don't know. But, that is what we were told and have read. Maybe you could call the doc that did your study and ask about Alphia waves in your sleep. It's also possible that where you had it done has docs that don't believe in FMS I don't know. But, I wouldcall and ask the doc if it were me ; about the Alphia waves. Good luck.
I posted 2 times the first came up with an error so I re posted and now I see it here so I shortened this one.
------------------
Take care ~Kim & Gary~
[This message has been edited by kim (edited 02-03-2002).]
The papers and other articals they told us to read (we asked for this info. on FMS and sleep) the sleep center gave us did to. Our Script had FMS on it. Did yours? Maybe they didn't report that but. I don't know. But, that is what we were told and have read. Maybe you could call the doc that did your study and ask about Alphia waves in your sleep. It's also possible that where you had it done has docs that don't believe in FMS I don't know. But, I wouldcall and ask the doc if it were me ; about the Alphia waves. Good luck.
I posted 2 times the first came up with an error so I re posted and now I see it here so I shortened this one.
------------------
Take care ~Kim & Gary~
[This message has been edited by kim (edited 02-03-2002).]
darlene
02-03-2002, 05:08 PM
Hi Kim - I just reread the doctors report that was sent to my PCP. All it stated that I had very little REM - does that mean anything to you? The reason I had the sleep study done was they were checking for sleep apnea and also because I was tired all the time - which in his report he did attribute to the FMS. Reason I'm wondering is how SSD will interpret that report.
Thanks,
Darlene
Thanks,
Darlene
korken
02-03-2002, 06:53 PM
Darlene, I believe that is dream sleep which stage I don't rember but I think it is either stage 3 or 4. I would call the sleep doc and ask a nurse or him directly. If they won't talk to you ask your PCP to request the info. for you. Or maybe your PCP would know. I was looking for the info. they gave me and I don't know if we still have it. I have so much paper stuff and much I though out. I will keep looking. But, the sleep doc maybe able to give you info. on this or where to get it.
Wish I could help more on this Q.
------------------
Take care ~Kim & Gary~
Wish I could help more on this Q.
------------------
Take care ~Kim & Gary~
gruffgriff
02-04-2002, 06:34 PM
Thanks, folks, for the information. Will keep an open mind. We must support the medical community. Those million dollar houses cost millions.
darlene
02-10-2002, 03:43 AM
Kim - I think I have found the answer to my question regarding the REM sleep. According to one of my many books on FMS the REM comes after stage IV sleep when the muscles are at the deepest resting state, does that make sense?? Hope so. Anyway, I suppose if I had very little REM sleep then that would mean my muscles aren't relaxing at night. I could have told them that without the sleep study. Right???
Darlene
Darlene
korken
02-10-2002, 02:35 PM
Darlene, Right. Our doctor said he doesn't need to have our 18 year old take the sleep test. He had us do it though and Gary again in a couple months and the 18 year old wants to take it so he is. Gary is being checked for Narcolepsy and to check on his past apnea problems. To make sure they arn't bach. He has gainedweight.
Gary didn't get any rem during his last 2 test. But, once in a blue moon he will have a dream.
------------------
Take care ~Kim & Gary~
Gary didn't get any rem during his last 2 test. But, once in a blue moon he will have a dream.
------------------
Take care ~Kim & Gary~
la_brat
02-10-2002, 10:21 PM
Our daughter will be undergoing a sleep clinic evaluation in two weeks. I was curious about the stages of sleep that were being discussed. I found a site that explained the different stages: REM (Rapid Eye Movement) and the NREM (I, II, III, and IV stages where rapid eye movement does not occur). http://www.sleepdisorderchannel.net/stages/
It seems many different types of illness can be discerned depending on how long a person spends in each of the 5 sleep phases.
It seems many different types of illness can be discerned depending on how long a person spends in each of the 5 sleep phases.
darlene
02-11-2002, 12:29 AM
Since this is on the topic of sleep - does anyone out there know what, if anything, it means when a person talks in their sleep all the time? I've done it since childhood and still will even wake myself up talking???