tiredpoet
01-06-2008, 05:00 PM
Hello all. I read the sleep disorder boards often, but I have not had a sleep study or been diagnosed with a sleep disorder. (My doctors so far refuse to approve a sleep study, and I can't afford to do it unless it's authorized so insurance will cover it. I'm still working on getting one and won't quit till I succeed.) I've been excessively fatigued for going on four years now (among a million other symptoms. The worst are the fatigue, brain fog and bigtime muscle weakness). They diagnosed me with Fibromyalgia and CFS, but I'm looking into Lyme disease also.
My question is this: Every day I wake up feeling as though a truck ran me over and like I never slept a wink. This happens whether I remember waking up all through the night or even if I feel like I slept straight through. I could sleep 18 hours straight and still feel like this.
I thought taking something to help me sleep would at least alleviate some of this, but that's the problem. Everything I've tried, whether over the counter or prescription, makes me even groggier, weaker and overall worse in the morning. It feels all the next day I feel like it's still in my system and I'm even more tired and generally just a mess. It's almost like when I take a sleep aid I need to make sure I can sleep 24 hours or something, which of course is just ridiculous! I've tried amitryptiline (sp?), ambien and a few other prescriptions, as well as pretty much every one you'd find in the aisle at the drugstore. And melatonin is the worst. When I take it I can't even move the next morning.
Anyone have any thoughts on why taking a sleep aid would make me feel worse? I don't know how they work, but don't they (at least the prescription ones) help you reach REM sleep? Or is there such a sleep disorder where you don't get quality sleep no matter what chemical aids you use? I'm trying to build my case for getting a sleep study, but really I just want my life back. I'm so tired of being tired!
My question is this: Every day I wake up feeling as though a truck ran me over and like I never slept a wink. This happens whether I remember waking up all through the night or even if I feel like I slept straight through. I could sleep 18 hours straight and still feel like this.
I thought taking something to help me sleep would at least alleviate some of this, but that's the problem. Everything I've tried, whether over the counter or prescription, makes me even groggier, weaker and overall worse in the morning. It feels all the next day I feel like it's still in my system and I'm even more tired and generally just a mess. It's almost like when I take a sleep aid I need to make sure I can sleep 24 hours or something, which of course is just ridiculous! I've tried amitryptiline (sp?), ambien and a few other prescriptions, as well as pretty much every one you'd find in the aisle at the drugstore. And melatonin is the worst. When I take it I can't even move the next morning.
Anyone have any thoughts on why taking a sleep aid would make me feel worse? I don't know how they work, but don't they (at least the prescription ones) help you reach REM sleep? Or is there such a sleep disorder where you don't get quality sleep no matter what chemical aids you use? I'm trying to build my case for getting a sleep study, but really I just want my life back. I'm so tired of being tired!
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challenge
01-06-2008, 10:00 PM
hey,
i have never experienced what you are talking about. however i think i may be able to help you. it sounds to me like the mind is the problem. could u answer me a few questions before i advise anything.
when you do sleep, do you dream?
in your waking life are you stressed out alot?
do you get angry fast? rate it on a scale 1-10, 10 highest
how well can you concentrate? same rate.
answer this i can tell what i think is wrong and what can be a solution.
i have never experienced what you are talking about. however i think i may be able to help you. it sounds to me like the mind is the problem. could u answer me a few questions before i advise anything.
when you do sleep, do you dream?
in your waking life are you stressed out alot?
do you get angry fast? rate it on a scale 1-10, 10 highest
how well can you concentrate? same rate.
answer this i can tell what i think is wrong and what can be a solution.
tiredpoet
01-07-2008, 10:58 AM
Hi there. Interesting questions, I'm so curious now! (I didn't take a sleep aid last night and I did not sleep at all.)
when you do sleep, do you dream?
I haven't remembered a dream in years. Occassionally I'll have those short dreams where I feel like I'm actually half awake and I know I'm dreaming, but other than that, no, I don't think I dream.
in your waking life are you stressed out alot?Not really. I'm fairly calm, I'd say.
do you get angry fast? rate it on a scale 1-10, 10 highest
I'd say generally a 4 or 5, but only if it's something worth getting angry about. I'd say I don't get irrationally angry, and I get really angry (like in the 8, 9 or 10 range) very rarely, and for good reason.
how well can you concentrate? same rate.Ha, this is a good one. My concentration on a good day is a 2 or 3 (I'm assuming low numbers here mean poorer and 10 is good), and on a good day I'm lucky to be up to maybe 6. I can't read a complete paragraph anymore even, that's how poor my concentration is. I have bad brain fog (they tell me it's from the fibro and cfs). I'm sure my sleep habits are to blame. I can't concentrate at all, I forget simple words, my memory is getting worse, etc.
answer this i can tell what i think is wrong and what can be a solution.
I'm so curious, can you tell me what you think, and also what you would think had I answered these questions differently?
Thanks!
when you do sleep, do you dream?
I haven't remembered a dream in years. Occassionally I'll have those short dreams where I feel like I'm actually half awake and I know I'm dreaming, but other than that, no, I don't think I dream.
in your waking life are you stressed out alot?Not really. I'm fairly calm, I'd say.
do you get angry fast? rate it on a scale 1-10, 10 highest
I'd say generally a 4 or 5, but only if it's something worth getting angry about. I'd say I don't get irrationally angry, and I get really angry (like in the 8, 9 or 10 range) very rarely, and for good reason.
how well can you concentrate? same rate.Ha, this is a good one. My concentration on a good day is a 2 or 3 (I'm assuming low numbers here mean poorer and 10 is good), and on a good day I'm lucky to be up to maybe 6. I can't read a complete paragraph anymore even, that's how poor my concentration is. I have bad brain fog (they tell me it's from the fibro and cfs). I'm sure my sleep habits are to blame. I can't concentrate at all, I forget simple words, my memory is getting worse, etc.
answer this i can tell what i think is wrong and what can be a solution.
I'm so curious, can you tell me what you think, and also what you would think had I answered these questions differently?
Thanks!
mkgbrook
01-07-2008, 11:23 AM
You really sound like you have sleep apnea or hypopnea another cause of sleep apnea due to shallow breathing causing a drop in blood O2 levels as you sleep. Look into the symptoms of these two disorders research and take it to your MD and stress that if they will not approve the sleep study and if you do have one of these disorders and have serious complications as a result.. they are liable for refusal of adequate care. Classic sleep apnea is aggravated by sleep aides. You take them and you can not wake properly to reboot when you have an episode and sleep gets worse for you. This really bites. Is there another MD in your network that might be more receptive to your issue? How did they diagnose Fibromyalgia and CFS? Have they checked your thyroid function completely (TSH, FT3, FT4, TPOAb)? It seems like they are cutting corners and you need to get support of a family member or significant other to verify snoring and choking in your sleep to push this issue. Sometimes the liability card works.. but you definitely need a sleep specialist consultation at least. Maybe you can get them to refer you to the sleep specialist and let the sleep specialist determine if a sleep study is warrented.
Good luck.
MG
Good luck.
MG
tiredpoet
01-07-2008, 01:59 PM
Thanks for the response. So sleep aids would make me feel worse if I had sleep apnea?
Interesting. I brought this up to my primary and the neurologist I saw. In fact, I've asked about it at least five times in the past year. They both asked if I snored. My husband (who works nights) took a week's vacation and every night monitored me to see if I snored or seemed to stop breathing. He said I didn't at all, but I do and always have had very shallow breathing while sleeping. I do snore occassionally, but I didn't the week he watched me. I snore mostly when my sinuses are acting up.
So I reported this to my docs and they said there's no way I could have sleep apnea since I'm only 105 pounds, don't snore and some various other reasons. I know this is not true, but they were insistent.
They've checked my thyroid and pretty much every other blood test they can do, and kept saying depression. Finally, to appease them I went to a psychiatrist, who confirmed I'm not depressed and I signed a form allowing him to converse with my primary so he could tell her this. Since they were then not able to blow me off anymore with the old "Oh, you're depressed, just go get on some meds" they settled on fibromyalgia and chronic fatigue.
I'm exploring every possibility. I'm even seeing a Lyme specialist in February. My fear is that he'll spend months or years treating me for Lyme based on my symptoms (the tests were negative, but I have many of the symptoms) and I still will have this debilitating fatigue.
Interesting. I brought this up to my primary and the neurologist I saw. In fact, I've asked about it at least five times in the past year. They both asked if I snored. My husband (who works nights) took a week's vacation and every night monitored me to see if I snored or seemed to stop breathing. He said I didn't at all, but I do and always have had very shallow breathing while sleeping. I do snore occassionally, but I didn't the week he watched me. I snore mostly when my sinuses are acting up.
So I reported this to my docs and they said there's no way I could have sleep apnea since I'm only 105 pounds, don't snore and some various other reasons. I know this is not true, but they were insistent.
They've checked my thyroid and pretty much every other blood test they can do, and kept saying depression. Finally, to appease them I went to a psychiatrist, who confirmed I'm not depressed and I signed a form allowing him to converse with my primary so he could tell her this. Since they were then not able to blow me off anymore with the old "Oh, you're depressed, just go get on some meds" they settled on fibromyalgia and chronic fatigue.
I'm exploring every possibility. I'm even seeing a Lyme specialist in February. My fear is that he'll spend months or years treating me for Lyme based on my symptoms (the tests were negative, but I have many of the symptoms) and I still will have this debilitating fatigue.
mkgbrook
01-07-2008, 10:22 PM
From the shallow breathing I really suspect hypopnea over sleep apnea. This would only be caught with a sleep study by the EKG monitoring they do. You need to argue for a consultation with a sleep specialist. See if the psychiatrist that you saw to rull out depression will refer you instead. I wish I could tell you how to get around the insurance and MDs.. but I can not. Keep after it. Sincerely, MG
bethsheba
01-07-2008, 11:10 PM
...So I reported this to my docs and they said there's no way I could have sleep apnea since I'm only 105 pounds, don't snore and some various other reasons.
Pardon my language but that's a bunch of crap!!! Tiny women (105 pounds is TINY) who don't snore can have sleep apnea...we've got some in my sleep support group and they'll be the first to tell you they're at ideal weight, physically fit, etc....but they sleep with a cpap!! I have read that only about 50 percent of people with sleep apnea snore...that means that 50 percent don't. If your doctors don't know this, they are not in a position to eliiminate apnea, nor are they in a position to make a referral. I would encourage you to find primary doctors who are versed in sleeping disorders so they can refer you to the appropriate specialist...if I were in your shoes, I would call my insurance company and ask them what primary doctors in my area make the most referrals to sleep specialists, and then I would call their offices and set up an appt. (Just for your info, my primary ignored my symptoms but my gynecologist simply made a referral at my request, no questions asked!).
Although you're not depressed, I just want to say for the other readers that depression can be a sign of sleep apnea. I experienced it only to have my depression lift after a good nap on the couch where I couldn't roll over to my back.
...I'm exploring every possibility. I'm even seeing a Lyme specialist in February. My fear is that he'll spend months or years treating me for Lyme based on my symptoms (the tests were negative, but I have many of the symptoms) and I still will have this debilitating fatigue.
I had symptoms similar to yours...but despite my sleeping disorder, I found that my symptoms were caused by bp medication. If you are on any type of medication, it's a possibility. Someone else I know was diagnosed with CFS and Fibro, doesn't have it now, and I strongly suspect this person's condition was caused by bp meds, which she no longer takes. This may not be the case for you, but you're wise to explore every possibility and it is one of many possibilities!
Take care and beware.
Bethsheba
Pardon my language but that's a bunch of crap!!! Tiny women (105 pounds is TINY) who don't snore can have sleep apnea...we've got some in my sleep support group and they'll be the first to tell you they're at ideal weight, physically fit, etc....but they sleep with a cpap!! I have read that only about 50 percent of people with sleep apnea snore...that means that 50 percent don't. If your doctors don't know this, they are not in a position to eliiminate apnea, nor are they in a position to make a referral. I would encourage you to find primary doctors who are versed in sleeping disorders so they can refer you to the appropriate specialist...if I were in your shoes, I would call my insurance company and ask them what primary doctors in my area make the most referrals to sleep specialists, and then I would call their offices and set up an appt. (Just for your info, my primary ignored my symptoms but my gynecologist simply made a referral at my request, no questions asked!).
Although you're not depressed, I just want to say for the other readers that depression can be a sign of sleep apnea. I experienced it only to have my depression lift after a good nap on the couch where I couldn't roll over to my back.
...I'm exploring every possibility. I'm even seeing a Lyme specialist in February. My fear is that he'll spend months or years treating me for Lyme based on my symptoms (the tests were negative, but I have many of the symptoms) and I still will have this debilitating fatigue.
I had symptoms similar to yours...but despite my sleeping disorder, I found that my symptoms were caused by bp medication. If you are on any type of medication, it's a possibility. Someone else I know was diagnosed with CFS and Fibro, doesn't have it now, and I strongly suspect this person's condition was caused by bp meds, which she no longer takes. This may not be the case for you, but you're wise to explore every possibility and it is one of many possibilities!
Take care and beware.
Bethsheba
bethsheba
01-07-2008, 11:23 PM
... My husband (who works nights) took a week's vacation and every night monitored me to see if I snored or seemed to stop breathing. He said I didn't at all, but I do and always have had very shallow breathing while sleeping. .....
Shallow breathing can cause a drop in oxygen levels that can be severe enough to cause serious problems. The shallow breathing can cause hypoxia which are low levels of oxygen in the blood. This is something that is measured in sleep studies. You might want to do some additional reading about it....and keep in mind that apnea can come and go and vary in severity...so just because your husband didn't pick up on anything, doesn't mean you don't have it...
When I had my sleep study done, I was connected to at least 25 electrodes, painless by the way. I doubt that they would go through all of this expensive and time consuming (8 hour) testing if apnea could be detected by observation alone.
Sorry, but I forgot to address this in my previous post.
Bethsheba
Shallow breathing can cause a drop in oxygen levels that can be severe enough to cause serious problems. The shallow breathing can cause hypoxia which are low levels of oxygen in the blood. This is something that is measured in sleep studies. You might want to do some additional reading about it....and keep in mind that apnea can come and go and vary in severity...so just because your husband didn't pick up on anything, doesn't mean you don't have it...
When I had my sleep study done, I was connected to at least 25 electrodes, painless by the way. I doubt that they would go through all of this expensive and time consuming (8 hour) testing if apnea could be detected by observation alone.
Sorry, but I forgot to address this in my previous post.
Bethsheba
danabarb
01-10-2008, 05:27 PM
I have had sleep apnea for years and never knew it. Last year, I was placed on the CPAP and was till tired. the sleep dr. had me do some blood work and lo and behold my thryoid is low. So please DEMAND that some blood work be done as well as have a sleep study test done. Don't forget that your dr. works for you. Some of them are sooooo pigheaded and quick to tell a patient he or she has problems in the mind when that is not the case. Your sleep is VERY important and if you do not get enough of it, it can make you miserable and the same is applicable to the thyroid. If it is not functioning well, it can make you feel awful.
bethsheba
01-10-2008, 07:57 PM
I have had sleep apnea for years and never knew it. Last year, I was placed on the CPAP and was till tired. the sleep dr. had me do some blood work and lo and behold my thryoid is low. So please DEMAND that some blood work be done as well as have a sleep study test done.
Yes, exactly! I new someone who dozed off at his desk, and after a physical it was determined he had a low thryoid. Many conditions can cause fatigue, and one can't assume that only one condition is doing so.
...Don't forget that your dr. works for you. Some of them are sooooo pigheaded and quick to tell a patient he or she has problems in the mind when that is not the case. ....
Well put, danabarb, well put. We've got to be well informed, firm, and actively involved in our health care...
Bethsheba
Yes, exactly! I new someone who dozed off at his desk, and after a physical it was determined he had a low thryoid. Many conditions can cause fatigue, and one can't assume that only one condition is doing so.
...Don't forget that your dr. works for you. Some of them are sooooo pigheaded and quick to tell a patient he or she has problems in the mind when that is not the case. ....
Well put, danabarb, well put. We've got to be well informed, firm, and actively involved in our health care...
Bethsheba
tiredpoet
01-10-2008, 10:00 PM
You're so right. I have had every blood test imaginable though. On paper I'm pretty darned healthy! Actually, every blood test is right on the cusp, either just over what would be considered "low" or just under what would be considered "high" for whatever they're testing, but I guess as long as it's in the little box they don't see any reason to investigate further.
mkgbrook
01-10-2008, 10:03 PM
:D I have sleep apnea and Hashimoto's thyroiditis as well. So I am HypoT and sleep deprived. I can not win. :) But managing both does help. You have to look at all possibilities and use process of elimination to get to the source of your problem. Be sure to get a full thyroid panel if you have a family history of such. You can have a normal TSH and still have thyroid issues. I know from personal experience there. But over all the quickest way to rule out a sleep issue is a sleep study.
Good luck.
MG
Good luck.
MG