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Old 07-18-2011, 09:39 AM   #1
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Unhappy Please, please, please could someone help with sleep disorder/chronic fatigue

Hi everyone,
I am hoping that someone on here has some information/advice for me on a long-term issue because it seems to be getting worse, it's driving me crazy and i want to get a life now that im a Mum!
Ever since my late teens I have needed heaps of sleep and have always felt extremely tired, never had any energy or stamina and felt generally 'achy' and sometimes 'spaced out'. It is not unusual for me to sleep for 12+ hours and still wake-up feeling exhausted. I never, ever wake feeling refreshed and require several very loud alarms to actually rouse me.
I have visited the GP at least 4 times and had tests each time for Anaemia, thyroid disfunction, diabetes, glandular fever, White cell count and endless other things all of which have come back negative. [I almost wanted 'something to be wrong so that at least I know what it is and can be treated] Other than doing the tests, the gp's have never taken me seriously and once the results have come back, they have almost 'dismissed' me as being depressed or made me feel like I was making it up.
I have more or less resigned myself to having to live with it and just get as much sleep as possible but I don't have a life, i don't get much [if anything] done some days and most importantly I now have a gorgeous, wonderful son and I can't be the mother I want to be. In addition, obviously my 15 month old wears me out more because he is constantly on the go and into everything and I cant keep up with him. I get so tired I want to drop and then I get moody and irritable. In addition, I also suffer from severe back pain [and general stiffness in the joints, particularly the knees] I have been diagnosed with arthritis of the spine. I regularly take diclofenac or other strong painkillers to alleviate the pain. Prior to having the baby, although I did not like having to live with the constant exhaustion, it was 'manageable' - I simply slept for very long periods and literally had no life.
Now I have the baby, its difficult to do that and even if I did not have my stunning little boy I don't know how much longer I could go on feeling c**p all the time. I am reluctant to go back to the gp because of the way they made me feel previously. I tried to purchase modafinil/provigil online but its not available without prescription and its very expensive. Please, please does anyone have any advice, tips or anything would be so useful - I am desperate. Thank you for reading.

 
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Old 07-18-2011, 10:35 AM   #2
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

Quote:
Originally Posted by flamminstarr View Post
Hi everyone,
I am hoping that someone on here has some information/advice for me on a long-term issue because it seems to be getting worse, it's driving me crazy and i want to get a life now that im a Mum!
Ever since my late teens I have needed heaps of sleep and have always felt extremely tired, never had any energy or stamina and felt generally 'achy' and sometimes 'spaced out'. It is not unusual for me to sleep for 12+ hours and still wake-up feeling exhausted. I never, ever wake feeling refreshed and require several very loud alarms to actually rouse me.
I have visited the GP at least 4 times and had tests each time for Anaemia, thyroid disfunction, diabetes, glandular fever, White cell count and endless other things all of which have come back negative. [I almost wanted 'something to be wrong so that at least I know what it is and can be treated] Other than doing the tests, the gp's have never taken me seriously and once the results have come back, they have almost 'dismissed' me as being depressed or made me feel like I was making it up.
I have more or less resigned myself to having to live with it and just get as much sleep as possible but I don't have a life, i don't get much [if anything] done some days and most importantly I now have a gorgeous, wonderful son and I can't be the mother I want to be. In addition, obviously my 15 month old wears me out more because he is constantly on the go and into everything and I cant keep up with him. I get so tired I want to drop and then I get moody and irritable. In addition, I also suffer from severe back pain [and general stiffness in the joints, particularly the knees] I have been diagnosed with arthritis of the spine. I regularly take diclofenac or other strong painkillers to alleviate the pain. Prior to having the baby, although I did not like having to live with the constant exhaustion, it was 'manageable' - I simply slept for very long periods and literally had no life.
Now I have the baby, its difficult to do that and even if I did not have my stunning little boy I don't know how much longer I could go on feeling c**p all the time. I am reluctant to go back to the gp because of the way they made me feel previously. I tried to purchase modafinil/provigil online but its not available without prescription and its very expensive. Please, please does anyone have any advice, tips or anything would be so useful - I am desperate. Thank you for reading.
Dear flamminstarr, I feel for what you are going through. Hopefully you have a support system such as family, friends or support group to help you when you just can not do anything. If you have not already let people know what you are dealing with.

Some of the possible Dx are fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus or other autoimmune disorder. Fine a tender points chart for fibromyalgia and see if you have very painful places. It is the only way that fibromyalgia is diagnosed. Check to see if you doctor ordered ana, sed rate or other indicators for lupus. You did not say wheter you have rheumatoid or osteoarthis. All thes disorders frequenly cause pain and brain fog. Sleep disorder is common among those of us who have fibro, RA, lupus and other such health issues. You really must get a diagnosis in order to know what to do so that you can sleep. Does the pain medication you take cause drowiness?

Being a new mom is exhausting enough so you need people who can support you and help out to give you time to rest. Does your new baby sleep most of the night? If so try to organize yourself to get sleep during that time.

I wish you well. Please keep posting as others will likley have information you can use.

Big hugs,
lobolee

 
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Old 07-18-2011, 11:52 AM   #3
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

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Originally Posted by lobolee View Post
Dear flamminstarr, I feel for what you are going through. Hopefully you have a support system such as family, friends or support group to help you when you just can not do anything. If you have not already let people know what you are dealing with.

Some of the possible Dx are fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus or other autoimmune disorder. Fine a tender points chart for fibromyalgia and see if you have very painful places. It is the only way that fibromyalgia is diagnosed. Check to see if you doctor ordered ana, sed rate or other indicators for lupus. You did not say wheter you have rheumatoid or osteoarthis. All thes disorders frequenly cause pain and brain fog. Sleep disorder is common among those of us who have fibro, RA, lupus and other such health issues. You really must get a diagnosis in order to know what to do so that you can sleep. Does the pain medication you take cause drowiness?

Being a new mom is exhausting enough so you need people who can support you and help out to give you time to rest. Does your new baby sleep most of the night? If so try to organize yourself to get sleep during that time.

I wish you well. Please keep posting as others will likley have information you can use.

Big hugs,
lobolee
Hi Lobolee and thank you so much for your support and advice.....I did forget to add to the post that my mum is a great help and takes care of the baby for me if I am having a particularly bad day. As for other family, I am a single parent [the baby's father does not want to be involved] and sadly we are a very small family. I am an only child & so is my mother.
The other thing I omitted to mention is that until now I have been on extended maternity leave and holiday leave etc but very soon I am going to have to return to work and I dont know how i will cope, im barely managing now.
I don't have any problems at all getting to sleep - quite the opposite - I struggle to stay awake. It is not uncommon for me to fall asleep at literally the drop of a hat and I have previously fallen asleep in unusual places - public transport and even in a very noisy pub with loud music!! The moment I lie down im asleep. The baby sleeps well most of the time and does not disturb me except when he wakes in the morning, but overall he tends to wake no earlier than 8.30am but I am still tired when I wake even if I have slept for a full 12 hours. I have considered Fibromyalgia and have done a diagnostic test online - I had a very high score so that is a possibility but its a struggle to get the GP to take you seriously - they 'label' you as being depressed and are so dismissive. I really dread going to be honest, but I guess i am going to have to 'bite the bullet' and deal with it if I am ever going to have a normal life for me and my son.
Thank you again for your support - I so appreciate it.

 
Old 07-18-2011, 12:38 PM   #4
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

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Originally Posted by flamminstarr View Post
Hi Lobolee and thank you so much for your support and advice.....I did forget to add to the post that my mum is a great help and takes care of the baby for me if I am having a particularly bad day. As for other family, I am a single parent [the baby's father does not want to be involved] and sadly we are a very small family. I am an only child & so is my mother.
The other thing I omitted to mention is that until now I have been on extended maternity leave and holiday leave etc but very soon I am going to have to return to work and I dont know how i will cope, im barely managing now.
I don't have any problems at all getting to sleep - quite the opposite - I struggle to stay awake. It is not uncommon for me to fall asleep at literally the drop of a hat and I have previously fallen asleep in unusual places - public transport and even in a very noisy pub with loud music!! The moment I lie down im asleep. The baby sleeps well most of the time and does not disturb me except when he wakes in the morning, but overall he tends to wake no earlier than 8.30am but I am still tired when I wake even if I have slept for a full 12 hours. I have considered Fibromyalgia and have done a diagnostic test online - I had a very high score so that is a possibility but its a struggle to get the GP to take you seriously - they 'label' you as being depressed and are so dismissive. I really dread going to be honest, but I guess i am going to have to 'bite the bullet' and deal with it if I am ever going to have a normal life for me and my son.
Thank you again for your support - I so appreciate it.
Hi Flamminstarr,
Print out the information you found online about the fibro tender points when you are able to get to the doctor again. Even though you are sleeping it sounds as though you do not get deep restorative sleep. I am glad your new little one sleeps well. Hope you get some help soon. I will say a prayer for you.
lobolee

 
Old 07-18-2011, 12:42 PM   #5
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

I forgot to mention that fibro prevents deep restorative sleep. One thing that works well for getting the kind of sleep you need is Elavil (amytriptaline<sp?>.
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Old 07-19-2011, 01:49 PM   #6
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

We seem to share many of the same problems from what I read in your post. I too was always in need of lots of sleep but never seem rested in my teens. I contracted mononucleosis in high school and it got worse. In my early 20's I developed thyroid disease and for the next 20 years developed many other problems. I found out after a car wreck that led to more medical testing that I have sleep apnea. The docs seem to think that is why I am always tired and sleepy. Unfortunately I have not done well with a cpap, and now have anxiety induced insomnia. I would suggest looking into testing for sleep apnea if you continue to feel this way. Good luck!
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Old 07-19-2011, 03:23 PM   #7
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

Hi mim and thank you for the useful post.
I am sorry that you were involved in a car accident, I hope that you were not badly hurt. Do you mind if I ask exactly what mononucleosis is as I have never heard of it. I did consider that sleep apnea might be the problem, but I dont snore [or so I have been told] and as far as I have been told I dont hold my breath or stop breathing while I sleep either. I may be completely wrong on this and my knowledge of the symptoms of sleep apnea but it is definately worth considering as I am desperate and willing to look at any possibility until I get to the the bottom of this horrible, debilitating illness as I am fed up of feeling c**p all the time.
Thank you again for your post, I will look into it, I hope that you find some way to alleviate your anxiety and insommnia. Take care & best wishes, Flamminstar

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Old 07-20-2011, 10:53 AM   #8
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

Mononucleosis, or Mono, or as they called it in high school "the kissing disease" (LOL) is a virus caused by the Epstein-Barr virus. It causes flu like conditions and in my case wiped out a lot of my immune system for a while. There are a lot of people that post and I have talked to that later developed other health issues after having this. I don't snore either, so had no clue I had sleep apnea. I know how frustrating and stressful it is to not know what is causing problems. Not having restful sleep makes us get run down, irritable, not think clearly, seem overwhelmed, and will the overall function of the body and mind. I hope you find some answers soon!
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Old 07-20-2011, 04:00 PM   #9
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

I too was diagnosed with sleep apnea after a sleep study. I do not snore nor do I choke at night. You can have sleep apnea or UARS (upper airway resistance syndrome) without these symptons. I suffered from debilitating fatigue, foginess and sleepiness from this disorder. I suggest you get tested.

 
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Old 08-06-2011, 11:10 AM   #10
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

This is to lobolee. I took elavil 100mg for sleep back in 2001. Just this year I asked my psych for elavil for sleep because he wanted to give me benedryl (yeah right) He told me he will not prescribe elavil because its bad for the heart. Have you heard anything about that or was he pulling my chain? I think its time to fire him! Yes, elavil worked just fine and yes an other psych orginally prescribed them. And yes, its 10 years later. I just don't understand doctor of any kind any more.

 
Old 08-06-2011, 02:21 PM   #11
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

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This is to lobolee. I took elavil 100mg for sleep back in 2001. Just this year I asked my psych for elavil for sleep because he wanted to give me benedryl (yeah right) He told me he will not prescribe elavil because its bad for the heart. Have you heard anything about that or was he pulling my chain? I think its time to fire him! Yes, elavil worked just fine and yes an other psych orginally prescribed them. And yes, its 10 years later. I just don't understand doctor of any kind any more.
When in doubt, research. I have not heard anything about elavil having negative side effects involving the heart. It is an old, old Rx and has been safely used for a very long time. It can be addicting even at the low level given to block pain at night for better sleep. I found that out myself when a doctor told me to quit cold turkey when he switched to a different med. But just as darvocet and darvon were withdrawn recently due to link to heart problems it may be that elavil may now be shown to have negative side effects. Hope this helps you get the answer before you fire your doctor. If he did just make up that excuse not to prescribe then definitely fire him

Hugs,
lobolee

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Old 08-07-2011, 11:31 PM   #12
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Post Re: Please, please, please could someone help with sleep disorder/chronic fatigue

flamminstarr,
I would suggest getting a sleep study done by a sleep specialist. In addition to doing the study to test for apnea & other issues, specifically ask about doing a multiple-sleep latency test. For the first test, they'll keep you overnight & monitor your sleeping for any irregularities. If you sleep through the entire night & show no issues, you'll stay & continue with the multiple-sleep latency test during the morning/afternoon. In a nutshell, it consists of you sleeping for a short time, then being woken up for a bit, then being allowed to sleep again, & then woken up....repeatedly. They'll track how many times you fall asleep, how long it takes you to fall asleep each time, and how fast you hit REM sleep.

Your symptoms sound very similar to mine. I was diagnosed with idiopathic hypersomnia. Unmedicated, I can easily sleep 14+ hours if no one wakes me - and still wake exhausted....then, if I allow myself, can easily fall back to sleep. People always say to me 'I wish I could sleep like that' - but they fail to realize that my sleep doesn't feel restful at all. Naps do nothing for me (except possibly make me more tired). I'm impossible to wake in the morning. In college, I was constantly pleading with teachers to let me off the hook for missing classes - despite setting 5 blaring alarms that annoyed my neighbors & having my mom call repeatedly to wake me most mornings. I'm always drained, regardless of my daily activities. I work as a preschool teacher, which can be exhausting - but there were MANY days that I came home and crashed around 5:00pm and was out for the night (and of course, very difficult to wake up 15 hours later, when it was time to get ready for work again!). As much as I LOVE my job, it got to the point that I was seriously considering a career change because I wanted to have a life again & couldn't see how I could possibly balance both - or worse, how I could possibly raise children in the future when I came home so drained. Fortunately, I came to remember that even during my lazy college days, my constant exhaustion was seriously affecting my life...and decided that a sleep study was the next step, rather than a career change.

The unfortunate thing about idiopathic hypersomnia deals with the 'idiopathic' part - which by definition, means there is no known cause for it. Despite the lack of understanding, there are ways to cope with it. Many people find success with stimulant medications. There's good & bad to each option - which you'll have to discuss with a Dr. if you are diagnosed, but the trade off is worth it to feel normal. For now, I have found that provigil works best for me (prescribed by my sleep specialist). I don't feel like I am on a stimulant - I just feel normal for once. I can go to work, come home and cook dinner, get some chores done & even exercise...and manage to stay awake until a normal bedtime hour. I feel so much more alive and awake - much more aware of what is going on around me & involved in activities.

I do still have issues with waking up - I have to rely on my husband to make sure I am awake every morning before he leaves for work (even though he leaves 2.5 hours before I do). I also bought 2 alarm clocks designed for hearing-impaired individuals, which are my back-up if I drift back to sleep. My husband makes sure I take my meds in the morning, so that if I do drift off, I am easier to rouse by the time the alarms start. It's a rough start to the day, but so far, it's working decently.

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Old 09-05-2011, 02:23 AM   #13
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Re: Please, please, please could someone help with sleep disorder/chronic fatigue

Hi and how are you doing? I was diagnosed with Fibromyalgia back on 4/3/2003 after I was in a car accident. An 85 year old man ran a stop sign, which was his second one in two weeks. Let me give you some advice, don't go to the doctors and tell him/her that you were on a site about (Fibromyalgia) and you fill you have it. They don't believe you very well. That happened to me. My hubby was the one who found out that I had Fibromyalgia. The car accident was the cause of it. You can go on disability like I did or keep on working. I had to close my tax and accounting business down 8 years ago. I get tired a lot but not like I do know. With having Fibro you get up in the morning and relax until you get up and go to work or you just stay home like me. You need to do a little at a time. I hope that helped you. Please see a doctor. Thank you and have a great day

P.S. Hear is what is going on with me now: Hi and thanks for reading my message...I hope there is someone out there or know someone that is having the same thing I am…I started getting sick on May 10th 2011...I thought it was just the flu but it’s not...I'm still having problems and I need HELP PLEASE...Here is a list of what is wrong with me: Dizziness, Chills, Decreased Appetite, Difficulty standing, fever 100.9, feeling faint, Hot flashes, Loss of balance, Muscle weakness, night sweats, tires quickly, sleep at least 15 hours a day, weight loss (unintentional) 20 pounds in a week and ½, Chest Pain, Shortness of breath, Twitching (all over body)… My weight was 100 pounds before all this came up…I was Diagnosed with Fibromyalgia on 4/3/2003…So far I have had a Colonoscopy test normal, MRI of the Brain and neck normal, Nerve test normal, Sleep study, X-Rays normal, Balance & Dizziness test said I was an 85 year old lady…All different kind of blood work normal (I get the last of the blood work tomorrow 8/30/2011)…When all this started happening to me I went to see my doctor who is a M.D. Board Certified Internal Medicine…I could not walk on my own so my daughter got me a wheel chair from the office…When my doctor came in the room he asked me what was going on, so I told him and he sent me to the hospital. He told my daughter to take me there now…So far I have been seen by my M.D. doctor, a Neurology doctor, Gastroenterology doctor, Infectious Diseases doctor and Radiology doctor…My hubby's boss knows someone in Washington state that is going through the same thing I am and she has been to 17 doctors now and nothing so far...I hope to hear from someone soon...Thank You and God bless

 
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