Hi all,
I was DX with sleep apnea and was put on one of those breathing machines. To tell you the truth it has really helped with my FM. I had always thought that sleep was one of the great contributors of FM, so I asked my Dr about it and scheduled a sleep study.
I was wondering how many others have had the study? I know that men, women even young children can have sleep apnea even without snoring. So even if you think you do not have maybe you should talk to your DR about anyway.

hi tt,
get ready for the most bizarre experience of your life. i had a sleep study done. first you quit any sleep meds. after a specific time period you go to sleep study world, put on your jammies, grab your teddy bear, get hooked up to a bunch of wire and then the nice tech leaves after telling you to sleep tight. they go to their observation room, and you try to go to sleep. i couldn't so i started playing with the red light at the end of the monitor on my finger. i was making tracers with the light when egor, yes egor came in and told me to stop playing and go to sleep. that really is his name! i managed to sleep a couple of hours, enough to give us a few answers. sleep apnea was not my problem. i have alpha intrusion (means my brain never sleeps) and restless leg syndrome.
the test is fun, weird and makes you feel like you are in a sci fi movie. do not expect to feel rested. i kept laughing. every time i would think about egor out there watching me i would think about passing gas or talking in my sleep and the laughter would bubble up. around 4 am i called egor in and told him i was done for the night. he said he had enough. i took a shower and split. it took the doc one week to get back to me with his impressions of the data.
i changed my bedding. i no longer tuck my covers in at the foot of the bed. i use a light flannel comforter and an even lighter down comforter. a top sheet or blanket is out. i make too much of a mess at night and usually wake to covers upside down and my head at the foot of the bed.
have fun and let me know what you think.
peace,
bluelakelady

Buelakelady all I can say is, DAMN!
Thats pretty funny. I bet that Egor hoped you would never show back up. Has the changes you made helped? I bet you are not with anyone are you? I can't see how anyone could sleep with you. hehe

too funny!! you bet i am alone. even the cats have given up thinking they could sleep with me! smart kitties. i think it may have been the flying lessons they were uncomfortable with.
actually egor said i was fun, silly, and made his job that night entertaining. he said most of the people he meets are suffering from sleep deprivation, frustrated, angry, whiney and so are seldom pleasant let alone goofy. i guess i thought lack of sleep made everyone as goofy as it did me.
did the changes help? so much so that i was able to regain most of my lost memory, become more active, experience less leg pain, and my thinking process returned. now when it skips off to jamaica for a bit i giggle. i know it will return. we all need a vacation, right? so i dive into the fibro fog, snuggle down, and wait for the rest of me to get back.
i had spent over 4 years without sleeping more than 45 minutes at a time. my normal ammount of sleep total would average 4 hours. my speech became slurred, oh yea, i can talk again. like you couldn't already tell. i do love to communicate.
i now sleep at least 6 hours, usually 8, with one or two trips to the little girls room. i am, after all, no longer youthful. at least my bladder isn't. my mind spends less time at the 3 year old level. actually, i like being little again sometimes. how many other illnesses offer you the whole spectrum. from toddler to adult all in one day!
it's time for me to be good. i had myofascial release therapy today. it hurts in a bizarre way. it is worth it tho. on saturday when i wake up i will have mountains of energy and less pain.
the sun is out. there is a breeze outside carrying the smells of an early spring to my nose. how delightful it is to open the windows and dress in one layer! what part of our little planet do you hail from?
peace,
bluelakelady
ps i expect a story when you rest up from your sleep study, tee hee!

Hi Buelakelady,
Actually I had my study several months ago. I found out that I would stop breathing up to 79 times an hour. They said I was world class. What an honor ! Since then I have been on a breathing machine at night, and had no idea that I was missing so much sleep for so long. It has really helped with the energy, but the pain is still there. You take care of your self.

hi tt,
if you are over 30 pain is a normal part of life. as we age pain comes. on the day that i die, i will come sliding into deaths door (as if it were home plate), worn out used up and laughing. all that pain is proof i have lived! fms is just giving me practice so that when i am very, very old i will still be laughing my way thru the pain. i do not mourn the loss of a perfect body. i evolve, adapt and grow into the changes.
the pain will be there no matter what you choose to do. so choose to do anything that brings you pleasure and/or a sense of accomplishment.
if i may be so bold, how old are you? i am cruising up on 50! very cool! i am so excited to be on my way to 50! i really mean it. how wise i will become as i age. giggle!
sunrise is coming. the day is infused with wonder, as am i.
peace,
bluelakelady
did you try untucking the covers at the end of your bed?
i assume you do not sleep alone, giggle, so how big is your bed, giggle.

hi tt,
if you are over 30 pain is a normal part of life. as we age pain comes. on the day that i die, i will come sliding into deaths door (as if it were home plate), worn out used up and laughing. all that pain is proof i have lived! fms is just giving me practice so that when i am very, very old i will still be laughing my way thru the pain. i do not mourn the loss of a perfect body. i evolve, adapt and grow into the changes.
the pain will be there no matter what you choose to do. so choose to do anything that brings you pleasure and/or a sense of accomplishment.
if i may be so bold, how old are you? i am cruising up on 50! very cool! i am so excited to be on my way to 50! i really mean it. how wise i will become as i age. giggle!
sunrise is coming. the day is infused with wonder, as am i.
peace,
bluelakelady
did you try untucking the covers at the end of your bed?
i assume you do not sleep alone, giggle, so how big is your bed, giggle.



You are bold, but not with that question. I am 42 and yes I sleep alone, but as strange as it sounds I am happily married. I love the woman but just can't sleep with her. She likes to have the TV on and eats in bed, and I like it dark with a fan blowing on me. It all started innocently enough, sleeping alone because one of us couldn't sleep or just anything actually. And then as luck would have it we decided that it was a nice arraingment. So now we sleep in seperate beds and all is cool.

how wise you both are. i have often wondered why it is only the affluent who realize the joy of seperate spaces in a loving relationship.
tell this wonderful, insightful woman i am very proud of her. she is graciously expressing the true measure of love. respect for space and compassion for needs other than her own. little wonder i love being female so much! strut strut!
peace,
bluelakelady

You know tutough, it's funny, I was just reading a FM newsletter that I subscribe to and it had a whole section about UARS and sleep apnea in it. It discussed sleep studies as well as the breathing apparatice that you use. It says that more FM patients than docs realize have this as a "side effect" of FM. I know myself, that I wake each morning with a stuffy nose, and I definately snore (loudly I might add) cuz I've woken myself up. Plus my husband loves to tell me that I snore! Boy talk about Karma. I was JUST reading about this! I usually just take an anti-histamine in the morning, but of course this isn't the "cure". A lot of FM take the anti-h before bedtime. They also recommend saline spray. It also a list some meds, but you know how I feel...? I think if I were to go to my rheumy with this, she'd poo poo me. Which is another subject in my newsletter. Researchers are finding that rheumies aren't actually good docs to treat FM because a lot of rheumies deal with things like arthritis and osteo which are more definitive conditons. Cut and dry so to speak and pretty cut and dry as far as treatment goes, but FM, you see, is more complex and takes more time to treat the way we Fibromites need to be treated. So, after reading that, where the heck do we go now, I ask?

I am going to make an appt. with a doc who specializes in musculoskeletal conditions, and see what he says about FM, then I'm canning my rheumy. I also found a doctor near me who has taken seminars about FM, so I'm definately calling him.

Also, in the next issue of my newsletter they are going to address the question of whether FM should be considered a "disease" rather than a "syndrome". Interesting.

I'll post more later on what was in my newsletter. This issue discusses FM patients and pain meds.

'til then,
peace,
tk

You know tutough, it's funny, I was just reading a FM newsletter that I subscribe to and it had a whole section about UARS and sleep apnea in it. It discussed sleep studies as well as the breathing apparatice that you use. It says that more FM patients than docs realize have this as a "side effect" of FM. I know myself, that I wake each morning with a stuffy nose, and I definately snore (loudly I might add) cuz I've woken myself up. Plus my husband loves to tell me that I snore! Boy talk about Karma. I was JUST reading about this! I usually just take an anti-histamine in the morning, but of course this isn't the "cure". A lot of FM take the anti-h before bedtime. They also recommend saline spray. It also a list some meds, but you know how I feel...? I think if I were to go to my rheumy with this, she'd poo poo me. Which is another subject in my newsletter. Researchers are finding that rheumies aren't actually good docs to treat FM because a lot of rheumies deal with things like arthritis and osteo which are more definitive conditons. Cut and dry so to speak and pretty cut and dry as far as treatment goes, but FM, you see, is more complex and takes more time to treat the way we Fibromites need to be treated. So, after reading that, where the heck do we go now, I ask?

I am going to make an appt. with a doc who specializes in musculoskeletal conditions, and see what he says about FM, then I'm canning my rheumy. I also found a doctor near me who has taken seminars about FM, so I'm definately calling him.

Also, in the next issue of my newsletter they are going to address the question of whether FM should be considered a "disease" rather than a "syndrome". Interesting.

I'll post more later on what was in my newsletter. This issue discusses FM patients and pain meds.

'til then,
peace,
tk


Hi TK,
That was a great post by the way. I was the one that brought up sleep apnea to my doctor. I told him I thought that a good night sleep was essential in fighting FM and he agreed. My doctor is an internal medecine doctor. When I statred seeing him he didn't know much about FM, so I printed up a bunch of info on it and took it to him. Now he knows a little more. I read about alot of people here that see Rheumies, so I asked my doctor if I should see one too. He told me that I might not want to do that, as he said, that most Rheumies don't believe in FM and will most likely tell you that you don't have it.

I wish they would reclassify FM. They would have to take us more seriously.

I am looking forward to hearing more from you, and take care.

Hi all...

I have Fibromyalgia/CFS. I was wondering if you could list some of your 1st symptoms and ongoing symptoms that led you to seek medical help? What tests were ordered?

I am short of breath frequently and wake up in the middle of the night feeling like I've stopped breathing and need to gasp for air. It is not anxiety or panic attacks. I just feel like I'm not getting enough air.

Thanks,
hewie :)

Hi all...

I have Fibromyalgia/CFS. I was wondering if you could list some of your 1st symptoms and ongoing symptoms that led you to seek medical help? What tests were ordered?

I am short of breath frequently and wake up in the middle of the night feeling like I've stopped breathing and need to gasp for air. It is not anxiety or panic attacks. I just feel like I'm not getting enough air.

Thanks,
hewie :)


Hewie, sorry to here about that. Not sure it is Fibro though. Mine started out just like most. I was tested for all the usual things and then they decided it had to be FM. Sorry I can't be more of a help to you.

Hi all...

I have Fibromyalgia/CFS. I was wondering if you could list some of your 1st symptoms and ongoing symptoms that led you to seek medical help? What tests were ordered?

I am short of breath frequently and wake up in the middle of the night feeling like I've stopped breathing and need to gasp for air. It is not anxiety or panic attacks. I just feel like I'm not getting enough air.

Thanks,
hewie :)

Hewie: Somewhere on the FM board is a post called "The List" or "The List goes On". I'll see if I can't find it and post it for you. Or just go under search (right up there at the top inbetween "New Posts" and "Quick Links" and type in The List, see what pops up.

Hugs,
tk

Hewie: Here is a copy of "The List" posted on 07-14-2004 by Senior Veteran:Copper You can also search the Net for FM symptoms. There is a wealth of info out there. Also, there is always new research being done on FM, which you can also find on the Net by simply searching for "new research for Fibromyalgia", or something to that effect. For example, there is currently a clinical study going on that is testing the medication Neurotropin. This med has been approved for use in Japan for easing pain.

Hope this helps some,
tk

The List

--------------------------------------------------------------------------------

Hi All,

I figured it was time to bring out "The List" again for all the new folks to the board (and for anyone else who may have forgotten where they put it )

It is a great tool to use to present your symptoms in a concise form to sometimes, slow to catch on doctors.



GENERAL
____ Fatigue, made worse by physical exertion or stress
____ Activity level decreased to less than 50% of pre-illness activity level
____ Recurrent flu-like illness
____ Sore throat
____ Hoarseness
____ Tender or swollen lymph nodes (glands), especially in neck and underarms
____ Shortness of breath (air hunger) with little or no exertion
____ Frequent sighing
____ Tremor or trembling
____ Severe nasal allergies (new allergies or worsening of previous allergies)
____ Cough
____ Night sweats
____ Low-grade fevers
____ Feeling cold often
____ Feeling hot often
____ Cold extremities (hands and feet)
____ Low body temperature (below 97.6)
____ Low blood pressure (below 110/70)
____ Heart palpitations
____ Dryness of eyes and/or mouth
____ Increased thirst
____ Symptoms worsened by temperature changes
____ Symptoms worsened by air travel
____ Symptoms worsened by stress


PAIN
____ Headache
____ Tender points or trigger points
____ Muscle pain
____ Muscle twitching
____ Muscle weakness
____ Paralysis or severe weakness of an arm or leg
____ Joint pain
____ TMJ syndrome
____ Chest pain



GENERAL NEUROLOGICAL
____ Lightheadedness; feeling "spaced out"
____ Inability to think clearly ("brain fog")
____ Seizures
____ Seizure-like episodes
____ Syncope (fainting) or blackouts
____ Sensation that you might faint
____ Vertigo or dizziness
____ Numbness or tingling sensations
____ Tinnitus (ringing in one or both ears)
____ Photophobia (sensitivity to light)
____ Noise intolerance



EQUILIBRIUM/PERCEPTION
____ Feeling spatially disoriented
____ Dysequilibrium (balance difficulty)
____ Staggering gait (clumsy walking; bumping into things)
____ Dropping things frequently
____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
____ "Not quite seeing" what you are looking at



SLEEP
____ Hypersomnia (excessive sleeping)
____ Sleep disturbance: unrefreshing or non-restorative sleep
____ Sleep disturbance: difficulty falling asleep
____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
____ Sleep disturbance: vivid or disturbing dreams or nightmares
____ Altered sleep/wake schedule (alertness/energy best late at night)



MOOD/EMOTIONS
____ Depressed mood
____ Suicidal thoughts
____ Suicide attempts
____ Feeling worthless
____ Frequent crying
____ Feeling helpless and/or hopeless
____ Inability to enjoy previously enjoyed activities
____ Increased appetite
____ Decreased appetite
____ Anxiety or fear when there is no obvious cause
____ Panic attacks
____ Irritability; overreaction
____ Rage attacks: anger outbursts with little or no cause
____ Abrupt, unpredictable mood swings
____ Phobias (irrational fears)
____ Personality changes


EYES AND VISION
____ Eye pain
____ Changes in visual acuity (frequent changes in ability to see well)
____ Difficulty with accommodation (switching focus from one thing to another)
____ Blind spots in vision


SENSITIVITIES
____ Sensitivities to medications (unable to tolerate "normal" dosage)
____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
____ Sensitivities to foods
____ Alcohol intolerance
____ Alteration of taste, smell, and/or hearing



UROGENITAL
____ Frequent urination
____ Painful urination or bladder pain
____ Prostate pain
____ Impotence
____ Endometriosis
____ Worsening of premenstrual syndrome (PMS)
____ Decreased libido (sex drive)




GASTROINTESTINAL
____ Stomach ache; abdominal cramps
____ Nausea
____ Vomiting
____ Esophageal reflux (heartburn)
____ Frequent diarrhea
____ Frequent constipation
____ Bloating; intestinal gas
____ Decreased appetite
____ Increased appetite
____ Food cravings
____ Weight gain (____ lbs)
____ Weight loss (____ lbs)


SKIN
____ Rashes or sores
____ Eczema or psoriasis



OTHER
____ Hair loss
____ Mitral valve prolapse
____ Cancer
____ Dental problems
____ Periodontal (gum) disease
____ Aphthous ulcers (canker sores)



COGNITIVE
____ Difficulty with simple calculations (e.g., balancing checkbook)
____ Word-finding difficulty
____ Using the wrong word
____ Difficulty expressing ideas in words
____ Difficulty moving your mouth to speak
____ Slowed speech
____ Stuttering; stammering
____ Impaired ability to concentrate
____ Easily distracted during a task
____ Difficulty paying attention
____ Difficulty following a conversation when background noise is present
____ Losing your train of thought in the middle of a sentence
____ Difficulty putting tasks or things in proper sequence
____ Losing track in the middle of a task (remembering what to do next)
____ Difficulty with short-term memory
____ Difficulty with long-term memory
____ Forgetting how to do routine things
____ Difficulty understanding what you read
____ Switching left and right
____ Transposition (reversal) of numbers, words and/or letters when you speak
____ Transposition (reversal) of numbers, words and/or letters when you write
____ Difficulty remembering names of objects
____ Difficulty remembering names of people
____ Difficulty recognizing faces
____ Difficulty following simple written instructions
____ Difficulty following complicated written instructions
____ Difficulty following simple oral (spoken) instructions
____ Difficulty following complicated oral (spoken) instructions
____ Poor judgment
____ Difficulty making decisions
____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
____ Difficulty following directions while driving
____ Becoming lost in familiar locations when driving
____ Feeling too disoriented to drive
__________________
Copper
Let Miracles Replace all Grievances

Copper

Thanks tkGoodspirt... and all I can say to that list is Wow! I have more of those things than I want - that's for sure! Thanks again,

hewie =)