< 00 WIDE AWAKE FOR 28 HOURS & COUNTING

Discussion in 'Fibromyalgia Main Forum' started by hdbubblehead, Aug 27, 2005.

  1. hdbubblehead

    hdbubblehead New Member


    STAYING AWAKE FOR DAYS, AND SLEEPING FOR DAYS IS ONE OF
    MY BIGGEST CHALLENGES. I TEND TO GO THE OPPOSITE OF THE
    MEDICATIONS. I FIGHT SLEEP BECAUSE I KNOW THAT WHEN I WAKE UP I HAVE TO START OVER WITH THE ACHES N PAINS. IF I STAY AWAKE, I CAN DEAL WITH IT. I USUALLY WAKE UP FEELING WORSE THEN WHEN I WENT TO SLEEP.

    PS. NO MEDICATIONS CAN PUT ME TO SLEEP EXCEPT AN IV.
    I CAN SLEEP 18 HOURS, BUT I WAKE UP EVERY 2-3 HOURS.

    ??? DOES ANYONE ELSE HAVE THIS TORTURE ???
  2. victoria

    victoria New Member

    I can only imagine the torture you're going through staying up like that, needing to sleep and yet dreading it cuz you're gonna have to wake up from it with pain!

    Sorry I don't have any answers, but here's a bump up to the first page; hopefully someone will come along with some good advice...

    all the best,
    Victoria
  3. Roseecoop

    Roseecoop New Member

    I am going on my second day now with pretty much no sleep. The little bit I get is a few hours sitting up on the couch then when I get up my pain doesn't seem to be as bad.

    I DESPISE going to bed and sleeping for anymore than 3 or 4 hours at one shot because I know I will wake up in agony. After a few days of losing so much sleep though. I have no choice. I have a 4 year old to chase around so I need to get refreshed again. But I HATE suffering with the pain when I get up. I just like the few hours on the couch thing much better!
  4. hdbubblehead

    hdbubblehead New Member

    WELL AFTER 31 1/2 HOURS I "MADE" MYSELF LIE ON MY BED. I DIDN'T EVEN USE THE COVERS, JUST GRABBED A ROBE AND PULLED IT OVER MYSELF. I SLEPT FOR ABOUT 3 HRS.
    ps. why do we call it a comforter, but even when i lay on top of the covers, there is no comfort? silly question.
    THANKS FOR YOUR COMMENTS AND CARE. XX ME. hd bubble

    [This Message was Edited on 08/27/2005]
  5. Musica

    Musica New Member

    when it doesn't help to think about sleeping to get away from the pain, but the depression it causes to wake up to it. I don't have anything to offer, I just had to say that it STINKS!!!
  6. lease79

    lease79 New Member

    My best friend does exactly the same thing & she is bi-polar. She can't control it though. She'll be awake for days bouncing off the walls with energy & then crash out for days straight.

    Lease
  7. hdbubblehead

    hdbubblehead New Member

    hi, nice to meet you. To answer your question about 9-11
    no one personally close but people I know did.
    I was able to write the song because it hurt everyone & I could feel it somehow. It was quite amazing. I was married at the time, and I remember that night asking my husband Brian, to give me two or three words that he felt, without thinking. just a feeling in words & he said, "your missed so much" and from that, I was off to the keyboard. I sat & prayed as the world was in shock, and as you can read in my profile, I know "shock and grief" firsthand!I asked Jesus to tell me what he would want to say & to use my hand because I couldn't write without HIM. I began writing & within a couple of hours I had the lyrics completed without changing or erasing one single word! It was awsome, a heartfelt song & because I knew I prayed first, I knew it was of GOD.
    (this is how I do most things in life thesedays) as long as I remember to pray, I know EVERYTHING WILL BE ALRIGHT!
    GOD IS IN CONTROL, now I just "SURRENDER" doing things my way & LOVE TO SEE THE OUTCOME. I choose to ask JESUS to lead me.
    So, that's why the photograph of Our Red, White & Blue.
    it's all about loving the USA and in memory of those who surrvived & those who went home to glory.
    I am a believer, I have been in the "BRIGHT LIGHT" and its AWSOME!
    but I was a stubborn woman at the age of 38 when I learned GOD is in control, not me. BUT THATS ANOTHER CHAPTER. :) (as you can see, I love to write)
  8. jenunsa

    jenunsa New Member

    Yikes! Awake for days at a time? That's off the hook!

    How do you stay awake? Do you drink a lot of caffiene or something?
    I'd suggest seeing a doctor about having a sleep study done. And also looking at what meds you are taking. Certain meds can interfere with sleep cycles. And certain foods, supplements, herbal teas, etc.
    Even though I understand why you would not want to go to sleep, lack of sleep will only make you worse.

    Have you had your thyroid levels checked? Hyperthyroidism can cause problems with getting to sleep and staying asleep.
    Also, I agree with Lease79, that being bi-polar (manic-depressive) will cause sleep patterns like yours.

    Good luck.
    [This Message was Edited on 08/27/2005]
  9. hdbubblehead

    hdbubblehead New Member

    WILL HELP TO UNDERSTAND THAT MY DOCTOR'S OVER THE PAST YEARS HAVE TRIED TO MEDICATE ME.
    I WAS NOT DXed WITH BI-POLAR, BUT I WOULDN'T DOUBT IT ONE BIT. I SEEM TO GET EVERYTHING ELSE IN THE BOOK. :)
    MY DOCTOR'S (2) SHRINK'S lol, call it
    MAJOR DEPRESSIVE DISORDER,RECURRENT,MODERATE.
    (THEY WOULD LIKE TO SEDATE ME TO THE POINT THAT I SLEEP WELL, BUT WHAT HAPPENS IS, I AM AWAKE UNTIL I EITHER FALL ON MY FACE (LITERALLY, SPLITTING MY HEAD OPEN WHEN I LAND)
    OR I STAY AWAKE PAST THE TIME THE MEDICATION SHOULD WORK, AND THEN IT DOES NO GOOD.
    I CAN SLEEP STANDING UP WITHIN A MINUTE AND NOT EVEN KNOW IT) IT'S CALLED NARCOPLEXY.LUPUS,FIBRO,CFS,BASICALLY THE ONLY DISEASE I DON'T HAVE WOULD BE EASIER TO WRITE. I DON'T HAVE CANCER YET, BUT IT'S IN THE FAMILY LINES,AND HEART DISEASE, BOTH SIDES. (GEE,WHAT WERE THEY THINKIN')
    ALSO DIAGNOSIS IS ANHEDONIA AND SLEEP DEPRIVATION.
    SOME PRESCRIPTION TREATMENTS INCLUDE- RESTORIL 30MG AT BED
    BUT I CAN TAKE 2 CAPS AND STILL NOT SLEEP, OF COURSE, ONCE I DO GO TO SLEEP, WELL DO NOT DISTURB CAUSE I AM OUT, who wants to be like that? it's a roller coaster ride & i want to scream, but not fun.
    OTHERS ARE; CELEXA, TRAZADONE,PAXIL-ANTI DEPRESSANTS
    MORE THAT I CAN'T EVEN RECALL. I WEIGH ABOUT 95-100lbs usually and can't keep the weight on, though i try.
    (it's just as difficult being thin as it is being fat) i tell people that because people think nothing of saying- youv'e lost weight or your so tiny or thin. believe me, its just as cruel as telling someone your too fat,or overweight,or "have you gained lately". so just know that those of us who are thin and look "frail" we know it!
    I am also given Adderall to give me "energy" as we all relate to fatigue! I like coffee but not the pain it can cause my muscles so once in a while i have a carmel-venti
    I dont always take the meds my doctors say because I know my reaction at home. I will landscape the yard and paint the deck if on some of the meds they give me to help with energy. Valium, Celexa, Methadone(dolaphine)for severe pain
    and i am in a pain management program with the best Doctor.
    An anethesiologist, my very own pharmacist, etc. I have a letter from my "shrink" for disability appeal (currently waiting for reply from judge) shrink states,"we've tried all kinds of antidepressants but to no avail for her depression". Another shrink says, " she has been treated with other antidepressants in the past with varying degrees of success, but none have been able to remit her recurrent depression.This has been since 1998 and previous to that at other times. my deep depression stems from my two younger sister's, both taking their own life and I don't know what to do without them. I feel cheated out of growing older together, not with just one but two. I have been married 4 times and my second husband took his life. I had just burried one sister then two years later, if you can imagine,my husband knowing the magnatude of that for me, doing the same and I had to stand at his grave & think, why would he put me through this again?
    My doctor of 23 years, took his life in 1999, after a terrible scandle worldwide, and i heard of his death first on the television news at 11:00pm. 14 years after my one sister died,my youngest sister took her life, and her dog was ill, so the same week we had to put him to rest after 15 yrs in the family too. I could go on, but you got an idea of maybe WHY I CAN'T OR DON'T WANT TO GO TO SLEEP?
    You may understand my situation a little better if you read my profile. believe me, it's worse than that! but I do my best. I am in chronic pain without the methadone, 24/7. I am able to find a relief point if I take pain meds on time, but as i stated, when I wake up, it's do it all over again! waaaaaaaaaah.
    but I manage...I was wondering how many other's have the difficulty of getting restful sleep? I'd really like to know if it's because of these trauma's or the illness'?
    I think I would know what area's to work on more if I knew of more people who are insomniacs.
    as far as "the sleeping tests", honestly I don't want to go through it. I try to stay away from meds I really don't need or that don't work for me. I won't take pills just cause my doctors say "here ya go". I've come too close to death because of accidental overdose. When your in too much pain we tend to overmedicate sometimes. MAKE THE PAIN STOP. I know two young women as I type, who are hospitalized tonight, one overdosed on meds because of chronic pain/femur bone broken and one hung herself with a 4 mo pregnancy. She was saved and currently in intensive care. All will be alive, no brain damage but one will not be allowed her unborn baby when he comes into this world. It's so sad, and her boyfriend was here trying to understand, he has a memory in his mind he will never forget, cause he saved her life when he found her hanging.
    if you pray, say something for Michael and Britteny too.
    and mother and baby. God knows who they are.
    I live daily with the fact that I am going to become a quadrapalagic due to a spinal cord narrowing in my neck. I was told that 21/2 yrs ago.I prayed for two days in my room & Iam still standing!! I have lost some use of my right hand in the past few weeks but thats cause i slept very wrong position, my neurologist gave me MEDROLpill-steriods,& i am doing a little better moving.That was real scary, i thought maybe the first big sign of paralisis,but maybe not. I love to write, so i can't imagine that going out on me yet.
    I pray JESUS, tell me what to do and how to get through the day cause I have'nt got a clue why I am gonna be lame to add to the heartache and mess this world is in.

    oh my, where does the time go.... I guess this is part of chapter 5 of my book. I am writing one, so if anyone cares to critic my writing please do so.
    **I've written a song, and that didn't get off the ground, i would love to write a book, & I would like to know what you all think about that. Do you think it would be interesting and helpful for others. Seriously?
    (of course i would need "spell check") but would you be interested in knowing more about my biography?
    now, if not, do me a favor and don't respond, I just couldn't bear it! nawwwwwwww, just kidding. I can take anything, didn't you know that by now? If you read all this, then I had your attention, right? let me know what ya think of me......and GOD BLESS EACH ONE WHO SEES THIS SENTENCE.
    IF I DIDN'T KNOW JESUS, I WOULDN'T KNOW PEACE, THAT'S FOR SURE!! DOES ANYONE OUT THERE KNOW ANYONE WITH A SIMILAR LIFE? I HOPE SHARING THIS WILL HELP SOMEONE KNOW, THAT SUCIDE IS NOT GOING TO FIX ANYTHING AND WHAT YOU DO TO HURT YOURSELF, SPLASHES ONTO SO MANY OTHER PEOPLE AND RUINS THEIR PARTY! LIFE IS A JOURNEY, AND IT'S MISERABLE AT TIMES, BUT LIFE JUST ISN'T ALL FUN. I HOPE IF ONE OF YOU IS THINKING ABOUT ENDING YOUR PAIN & PROBLEMS...DON'T!
    STAY HERE AND GET THROUGH YOUR TROUBLES.
    TOMORROW IS ANOTHER DAY... REALLY and ya might not get another chance to be with someone special.
    SOMEONE LOVES YOU!!! LOVE SOMEONE!!! PEACE.....
    hd bubble
  10. hdbubblehead

    hdbubblehead New Member

    ... THIS IS REALLY CRAZY. I HAVE A SPLITING HEAD AND NECK ACHE BUT I CAN'T FALL ASLEEP. WHAT IS WRONG WITH ME?
    I EVEN TOOK A 10MG VALIUM & SOMA & ANTIDEPRESSANT & 10MG OF DOLOPHINE FOR SEVERE PAIN. A DOCTOR ONCE TOLD ME YA CAN'T DIE FROM LACK OF SLEEP...I DON'T WANT TO DIE, I JUST WANT SOME QUALITY REST.
    I CAN'T STOP THINKING OF EVERYTHING GOING ON IN MY LIFE, AND YET, NOTHING IS GOING ON AT ALL TODAY.
    I DO ENJOY WRITING IN THE MESSAGE BOARD TO ALL BECAUSE I CAN RELATE TO EVERYONE, BUT THIS IS CRAZYNESS.

    I LOVE TO WRITE SO THATS A PROBLEM SINCE I FOUND THIS WEBSITE.
    OKAY, I AM GONNA TRY AGAIN. IT'S BEEN ANOTHER LONG ONE.
    PEACE TO ALL.........ME
  11. hdbubblehead

    hdbubblehead New Member

    i tried to take a nap at 6pm but as i was drifting off, i woke myself up with sobs and tears.
    I miss my sister's so much and i have times like these when nothing allows me to think of anything else.
    and because my physical activity is so limited, i get lonely, We were all very close.
    I will never get over this. the memories are constant 4 times a year. two birthdays two death anniversaries.
    I STAYED BUSY TODAY THOUGH. I WATERED THE YARD AND CLEANED THINGS. I AM GETTING MY HOUSE CLEANED BEFORE I HIRE THE CLEANING GIRL. ISN'T THAT THE WAY ITS DONE?
    I MEAN WHY SHOULD SHE CLEAN UP THIS WEEKS DUST. LOL
    ANYWAY... SOMEONE NAMED CHOPPERDOCTOR WROTE A BEAUTIFUL LETTER AND I SAW IT WITHIN MINUTES AFTER IT WAS WRITTEN AND THE AMAZING PART WAS, I WAS LOGGING OUT WHEN IT POPPED BACK ON MY SCREEN. OOOHWEEEEOOOOOH.
    I LOVE JESUS. I WAS SO "MOVED" BY THE INTENSITY OF HIS HEARTFELT WORDS.
    I WONDERED THOUGH THE S/N IS CHOPPERDOCTOR AND THAT DREW ME TO READ IT. CAUSE OF MY S/N - HD BUBBLEHEAD
    (HARLEY DAVIDSON - "CHOPPER"- HE IS PROBABLY A DENTIST.
    bAHAHAHAHHA HA HA.......... I STILL GOT IT!
    BY EVERYONE, PRAYERS! PEACE.
  12. hdbubblehead

    hdbubblehead New Member

    I HAVE NOT SLEPT SINCE FRIDAY AT NOON IF I AM THINKING RIGHT.
    I EVEN WENT TO THE STORE TONIGHT AT 10PM, CAN YOU BELIEVE IT?
    AFTER I TOOK MY OTHER PAIN MED, I GOT ANOTHER "WIND" AND WENT SHOPPING FOR AN HOUR. I DON'T WANT TO SLEEP.
    IF YOU DON'T SEE ME WRITE FOR A DAY OF SO, YOU'LL KNOW I FELL ASLEEP.
    THANKS FOR YOUR THOUGHTFUL WORDS TOO
    I NEED EM. THANK YOU VERY MUCH. PEACE. ME, HDB

    YEP, I HAVE SLEEPING PILLS.TOOK 2 YESTERDAY
    NOTHING IS WORKING THIS TIME. I AM REALLY TRYING.
    MAY YRS AGO MY FAVORITE DOC SAID (JUST BEFORE A MAJOR OPERATION) " WE COULD HAVE KNOCKED OUT AN ELEPHANT WITH THE DRUGS WE PUT IN YOUR IV. LOL. SO TRUE!
  13. bpmwriter

    bpmwriter New Member


    have you asked your doc about XYREM?? it's helping a lot of fibro patients get sleep and is specifically indicated for narcolepsy and (cataplexy?).

    eddie
  14. hdbubblehead

    hdbubblehead New Member

    IT IS NOW 47 HOURS WITHOUT SLEEP. THIS IS A "BAD ONE".
    I TRIED TO SLEEP AND WOKE UP WITH TEARS ON MY FACE. I GOT ABOUT 20 MINUTES.
    MY NECK IS REALLY IN PAIN AND SWOLLEN TOO.
    CLASS? ANYONE? I HAVE CERVICAL SPONDYLOTIC MYELOPATHY-CSM
    ITS COMPRESSION OF THE SPINAL CORD IN THE NECK.
    THE FINAL OUTCOME-I AM GETTIN READY TO TAKE MORE PILLS NOW, BRB.
    OKAY...LETS GO WITH THE VICODEN SINCE IT WILL START WORKING FASTER THE THE OTHER MEDS.

    TO ANSWER A COUPLE OF QUESTIONS- I DO HAVE A SLIGHT CASE OF NARCOPLEXY- DOCTOR'S TREAT FOR SEIZURES TOO. I CAN FALL ASLEEP STANDING UPRIGHT WHILE BUSY DOING SOMETHING. NOT A GOOD THING CAUSE I ALWAYS GET HURT. AND THERE IS NOTHING THE DOCTORS CAN DO FOR ME CAUSE I REFUSE THE OPERATION IN MY NECK.

    XYREM- NO TO THAT ONE. I CAN ASK DOCTOR AFTER I READ UP ON IT.
    I AM A MESS TODAY, BUT I LOOK PRETTY... :)
    DHEA- DID NOT HELP, CAUSED ME OTHER PROBLEMS THAT I COULD TELL.
    I USED IT TOPICALLY TOO ON MY ARM BIOPSY. WHEN I HAD HORSES, THAT WAS THE BEST STUFF TO HELP A HORSE WITH INFLAMMATION AND TORN LIGAMENTS.
    IT SOUNDS CRAZY BUT AFTER THE BURNING WENT AWAY SO DID MY PAIN (A DEEP MUSCLE BIOPSEY IN THE ARM) TAKING A WEDGE OF MUSCLE TO DISCECT FOR LUPUS.THAT WAS A HORRIBLE TIME FOR ABOUT A YEAR. I HAD TO BE AWAKE WHILE CUT WITH JUST NOVACAINE INTO MY ARM. DON'T ANYONE EVER SAY OKAY TO THAT. ALWAYS TAKE THE PAIN MEDS, AND START
    ** THANKS FOR THE CONCERN AND ADVICE!! HUGS!!!

    THE PAIN PILL IS WORKING NOW AND THE PAIN IS EASING UP.
    (WRITING HELPS TAKE MY MIND OFF THE AGONY, BUT IAM GONNA TRY TO SLEEP BEFORE I LOSE THE FEELING.
    CHAT WITH YOU LATER. DON'T GIVE UP ON me...dang, were did this weekend go
    but be with you
    [This Message was Edited on 08/29/2005]
  15. hdbubblehead

    hdbubblehead New Member

    well, i took a sleeping pill this morning and fell asleep somewhere in my house for about 2 hours, yep thats all.
    so iam awake again. I only seem to fall asleep at the computer now, so i am gonna try the couch again..........
    wish me ZZZZZzzzzzz's.........
    by-by until later. i am turning the phone off too!
    Until later...........
    ps its so hot outside!
  16. jenunsa

    jenunsa New Member

    I am totally wishing you zzzzzzzzzs.
    I don't know what else to say. It sounds like you have a very hard life with your health problems and then all the tragedies that happened in your family. Your stories brought tears to my eyes.
    I'm sending you vibes of strength~~~~~~~~~~~~~
    Keep on hanging in there.
    Fuerza! (strength in Spanish)
  17. skinnymini

    skinnymini New Member

    will just prescribe more drugs....
    You need to see someone who will look for causes and tell you WHY you are not sleeping.
    I saw a naturopath and he gave me several tests that revealed a very real cause for my insomnia, which had been a terrible problem for 17 years!!! My medical dotor had only prescribed antidepressants at times during those years and the rest of the time I just fumbled along, literally. I finally went to a chiropractor/naturopath who confirmed that I had virtually no seratonin in my system. I have since been put on mega doses of 5-HTP (tryptophan)which is the natural precursor to seratonin and am doing MUCH better. I still have a ways to go before my levels are up to NORMAL but I am sleeping much more soundly now..AND it is ALL NATURAL and completely drug free.

    The muscle aches and pains went away when I stopped eating those things we discovered I am allergic to... CANE SUGAR, chocolate, bananas, all dairy, etc. In the future I plan to see someone who will eliminate my allergies through NAET therapy. I am also considering a liver and colon cleanse but first I need to read more about it. I have read that an over-taxed liver can cause all kinds of aches and pains and allergies, etc.

    READ. READ. READ. EMPOWER YOURSELF. It sounds to me like you are waiting for answers from others. I don't think that is the best way..You need to start doing your own research because you are the only one who truly knows your condition.
  18. lovethesun

    lovethesun New Member

    My first fffflare came on with a bang.....and 5 days without sleep,i'm not a doctor,but it sounds like you've got a lot of others factors contributing to your lack of sleep,So sorry about all you've had to go through.All the advice I can give you is tackle the problems 1 at a time-you can't be superwoman.May God bless you.Linda
  19. hdbubblehead

    hdbubblehead New Member

    THANK YOU, TO ALL! I APPRECIATE YOUR INPUT AND ALSO LETTING ME KNOW HOW EACH OF YOU HANDLE YOUR PAIN AND SLEEPLESSNESS.
    I SLEPT ABOUT 5 DIFFERENT TIMES TODAY AND 4 TIMES I WAS STANDING UP, LEANING ON A WALL BUT I FELT OK WHEN I OPENED MY EYES. THOSE ONLY LASTED A FEW MINUTES THANK GOD CAUSE I USED TO HIT THE GROUND. LATELY I WAKE UP BECAUSE I HEAR "MY VOICE TALKING" OUT LOUD ABOUT MY "THOUGHT OR MINI-DREAM OR THE PHONE RINGS & I WAKE. I CAN ALSO FALL ASLEEP AT THE COMPUTER IF I TAKE A PAUSE OR I'M RESTING MY EYES.
    IT'S LIKE HAVING JET-LAG!
    I WILL BE CALLING MY DOCTOR TOMORROW,OPPS, LATER TODAY. IT'S 7:00 AM NOW. been awake since who knows when? I wrote it in my journal.
    RUT-ROW- SHOULD I GO TO SLEEP NOW, OR SHOULD I STAY AWAKE SO I CAN CALL DOCTOR AT 8:30 AM ?
    LA DE DA.......... THANKS EVERYONE FOR YOUR TIME,PRAYERS
    AND CONCERNS. Sincerely,
    "UNDER HIS WINGS"
    verse: PSALM- 91:4

    Sept 1, 05

    I finally had some "sleep", I did alot of chores, with rest times in between,(getting me house ready for a housekeeper, how dumb is that?)lol- took meds to help me get through it.
    even got out of the house and bought some new clothes and a few other goodies , like throw rugs to put on the tile floor, so i won't slip. (magnolia patterns) you'd like em.
    "soothing to the eye" as the witch says about "poppies" in the Wizard of oz. lol
    And i have taken all the info down that you have given me to look into, so i thank you and i am on the research trail again. btw- today is Sunday at 7:30pm and after sleeping since friday -one sister who passed on the 2nd of Sept. so i usually sleep through that day medicated. I was in horrible pain from low back ache. felt like the flu, I looked and felt "tore up" but am getting my strength back a little bit every hour.
    **i recommend a movie called "Rory O'shea was here". thats if you like a story, with some humor but heartfelt about people with ms, most are in wheelchairs, quadro's, MD, etc.
    Ya just gotta Love Rory!!!
    i have only seen half, and going to watch the rest now..
    I WOULDN'T WANT TO SPOIL THE ENDING, it might be lousy, to each his own, right.give it a try, i think its a "tear jerker"
    "ov'r 'n ouuuut" xx harley davidson bubblehead [This Message was Edited on 09/04/2005]
    (i re-read and saw some mispelled words) :)[This Message was Edited on 09/04/2005]