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Old 12-01-2012, 01:04 PM   #1
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Patricia99 HB User
Unhappy Am I the only one?

Hi there. I've been thoroughly debilitated by chronic fatigue syndrome for more than twenty five years. I am female and since I became post menopausal my symptoms have become so bad theyre devastating. I have profound fibromyalgia, arthitic joints and extreme pain, exhausted to the point of gasping for breath if I try to walk at all. Brain fog, poor memory and inability to concentrate too are much worse along with no 'restfull phase' sleep unless I take sleeping meds. Does any othet sufferer have these symptoms or am I the only one?

 
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Old 12-01-2012, 08:43 PM   #2
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Re: Am I the only one?

I'm sorry you are not feeling well. You mentioned that you have unrefreshing sleep which may point to an underlying sleep disorder. Lack of restorative sleep overtime can cause fatigue and myalgia. Have you ever asked your primary care doctor to refer you to a sleep study (polysomnography)? This can help you diagnose your sleep disorder.

 
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Old 12-02-2012, 01:28 AM   #3
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Re: Am I the only one?

Quote:
Originally Posted by phoebe368 View Post
I'm sorry you are not feeling well. You mentioned that you have unrefreshing sleep which may point to an underlying sleep disorder. Lack of restorative sleep overtime can cause fatigue and myalgia. Have you ever asked your primary care doctor to refer you to a sleep study (polysomnography)? This can help you diagnose your sleep disorder.
Hello. Thank you for your response. I also suffer badly from carbohydrate intolerence. This has been diagnosed as part of the chronic fatigue spectrum. Especially to grains. I did once manage to live a carbohydrate existance for a whole year. My symptoms improved dramatically including my negative sleep issues. But have been unable to continue carb free. I know that chronic fatigue affects individuals differntly. i.e. not all patients experience all of the spectrum syptoms. Sadly I do seem to be affected by them all. Kind regards.

 
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Old 12-15-2012, 09:35 AM   #4
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Wink Re: Am I the only one?

pat, 25 years ago i got the flu, when i got over it, my life changed. i had been active, able to walk, drive, be with my 3 yr. old and other family members at recreation. i became so tired, i could hardly get through the day. since then, i have been to doctors, had MRIs, blood test, can't find any reason why i am a chair potato. the least amount of walking or cleaning causes me tobe out of breath. i birdwatched while my family hiked. i sat in the car while they would go look at the views. our vacations became less fun for me. i spent a lot of time at the grand canyon sitting on the rock fence playing with the squirrels. i didn't notice much change in me after menopause. i have just been the like an old lady since i was 40. i do have a lot of hot flashes still. but as for the fatique it is about the same. i haven't been given that diagnosis, my PCP says i have fibromyalgia. i had black outs when it started at age 40, and every so often when it first began i would have a "normal" day. i would clean house or do whatever i could on that day. the next day i couldn't even crawl out of bed. yes i have had days i couldn't get out of bed. my children have grown up without a mother doing the normal things with them. my son who was 3 became my helpmate. he felt like all he was all his life was mama's go for. he told me once he never wanted to be called a gopher again. i did not realize what i had done to his life. when he left home, i lost the one person who could finish my sentences for me. he always knew the word my brain didn't
i could have written your letter word for word. i take narcotics for the pain, pills for the fibro, and pills for the arthritis. but i am still a chair potato.
so NO you are not the only one. kat.

 
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Old 12-15-2012, 09:56 AM   #5
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Re: Am I the only one?

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Originally Posted by birdsandthings View Post
pat, 25 years ago i got the flu, when i got over it, my life changed. i had been active, able to walk, drive, be with my 3 yr. old and other family members at recreation. i became so tired, i could hardly get through the day. since then, i have been to doctors, had MRIs, blood test, can't find any reason why i am a chair potato. the least amount of walking or cleaning causes me tobe out of breath. i birdwatched while my family hiked. i sat in the car while they would go look at the views. our vacations became less fun for me. i spent a lot of time at the grand canyon sitting on the rock fence playing with the squirrels. i didn't notice much change in me after menopause. i have just been the like an old lady since i was 40. i do have a lot of hot flashes still. but as for the fatique it is about the same. i haven't been given that diagnosis, my PCP says i have fibromyalgia. i had black outs when it started at age 40, and every so often when it first began i would have a "normal" day. i would clean house or do wha tever i could on that day. the next day i couldn't even crawl out of bed. yes i have had days i couldn't get out of bed. my children have grown up without a mother doing the normal things with them. my son who was 3 became my helpmate. he felt like all he was all his life was mama's go for. he told me once he never wanted to be called a gopher again. i did not realize what i had done to his life. when he left home, i lost the one person who could finish my sentences for me. he always knew the word my brain didn't
i could have written your letter word for word. i take narcotics for the pain, pills for the fibro, and pills for the arthritis. but i am still a chair potato.
so NO you are not the only one. kat.
Hello Kat. Thank you for your response. I was so sorry to hear your sad story. I keep believing that there WILL Be a cure for us!!! We DON'T deserve to be this sick and for so long. So many 'LOST' years of life and relationship. Husband gone, job gone. Hobbies and passtimes gone, income gone. I guess our list of 'losses' is endless. I wish you a full and complete recovery and complete restoration of the happy life and relationships you want for yourself and your family. And of course Merry Christmas and Happy New Year.

 
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Old 12-15-2012, 10:02 AM   #6
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Re: Am I the only one?

thanks for the support. i have pretty much learned to live like this. my husband has been mostly understanding, he does all the driving, and the children are gone but we have the grandchildren come over and he helps with the little ones. my main loss was being self sufficiant and doing for others. i do feel i lost years of my life. not being able to do the things we enjoyed doing together. camping is our main type of recreation and i am just a sitter while others do the work and go hiking. i still enjoy being outdoors.
i am sorry for your losses. we have to just be positive about what we do have left to enjoy.

 
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Old 02-26-2013, 02:44 AM   #7
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Re: Am I the only one?

Hi there you are certainly not the only one, I have just joined this site today because I am now totally house-bound with chronic fatigue, fibromyalgia and irritable bowel syndrome, and sometimes feel that I am the only one.
I never had a full nights sleep for nearly two years until I got my pain medication sorted out, so that is very important. Also I am managing to avoid most of the menopausal symptoms by being allowed to stay on the mini pil.
I have learn't all about pacing and it helps a lot with the CFS but I am still spending half the week in bed because of the IBS.

 
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