anyone else awake in pain?

Hi guys, thought all my prayers had been answered amd gabapentin was working..just causing side effects of sleepiness. Havent been driving because of it. Reduced tablet so i could drive in morning to meet my friend who i havent seen in ages.... feel really guilty as if pain doesnt settle wont be able to get out. Her dad died and i wanted to give her support, some friend i am.........I want jus a little bit of normality back, its obviously too much to ask. (sorry for moan)x

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  • had a short sleep but awake for 2hrs...listened to Paul Mckenna sleep cd 3 times to no avail.

    I sat out in sun yesterday for 30mins...it seemed to help.I use a SAD lite on a daily basis but the sun seems to be better.

    Hope u feel better later on. Take care : )

  • Hi i have been awake since 3.30 but my pc is in dining room and daughter has got my laptop on loan ( well sort of permanenetly0 really so i cant come on in the early hours as i dont want to start coming down here and typing away i jus lay and pray that i drop dff lol anyway hope you get the meds sorted love to you diddle x

  • Hi Christine, hope you`r as well as can be with your busy life and this rotten fibro.

    I know it`s been asked before but do you think there is any possibility of us having a chat room.

    Even if it was just operable at night for those of us that can`t sleep.

    I can ask i suppose and live in hope that this brilliant site could do that.

    Have a good day Hugs Butterfly xx ;-)

  • Hi again Christine,Thanks for reply and so glad you think it would be a good idea.

    I bet you are tired after a day at work and coping with this demon.I didn`t sleep at all last night so started to wash ornaments,dust off book and generaly make a mess.

    But my friend came to the rescue,roped in my neighber,and down came the curtains,windows washed,carpets hoovered and little old me and my stick following behind doing the jobs I could.

    Quite amazed myself after being constantly sick since xmas.

    The cobwebs have gone,the sunshine comes in and the smell of polish is a joy.

    Me,Iv`e colasped into bed got to wait till 11pm for next gabapentin(just started) with a dose of morphine cup of tea and a Yorkie curled up beside me.

    If I don`t sleep tonight then I really reckon I was Hitlers girlfriend in a previos life.All we want is sleep not a lot to ask for is it.

    Anyway Christine have a lovely,but chillier weekend and

    rest if you can.

    Love and Hugs Jayne xxx

  • Me again,how about a book club?.

    I haven`t been able to work for a long time after spinal op went wrong.But did do samartans till this and Sjogrens got worse.

    Miss it sometimes but I`m depressed myself now and not use nor ornament lol

    byeeeeeeeeee xxxxxx

  • Hi Jinty don`t beat yourself up hun,If she is a true good friend she will understand what you are going through.

    I have started gabapetin and all I`ve done is sleep and then at night I cant.I did`nt come on as I was cleaning ornaments and dusting off books as I just told diddle.

    I wish we could have a chat room on here,then in the night ,if it was only open then we, could all chat,and it wouldn`t seem so long would it.

    Sorry I was saying about the gabapentin I have just reached my maximume dose of 1200mg and yes it has knocked me sideways,very wobbly on my pins,headache`s, sleeping, constipation,no appetite and on and on lol.

    I have morhine for my spinal problems and haven`t wanted to take,although have had one dose a day as it is too dangerouse to just stop after all these years.

    I so understand what you say about a normal life,don`t know how old you are,I`m 58 and I haven`t had one of those since my twenties.It`s a right bugger really.I want to be a bit of totty again not a rotten grotty.

    Anyway hun I hope you can get to your friend but please take care with driving hope the day is o.k for you.

    love and hugs Butterfly xxx ;-)

  • Pain seems to be cosntant. I was told to expect flare ups, but since being diagnosed last December - nothing has got any better. I have spinal issues on top of FMS, Irrit bowel & bladder, high blood pressure, caprol tunnell etc. I had no sleep again last night due to the pain. I keep trying to push myself more and more each day, cos I don't want this to beat me. Think I might have over done it yesterday as last night was horrendous. Felt like feet were walking on broken glass, let alone the pain in the rest of my body. I'd just like one nights decent sleep which might just help me feel like I can cope with all of this!. I was so positive yesterday, but today - down, very down!. Gentle hugs, extra spoons sent to one and all. :-)

  • I think despite what the Drs say no matter what meds you're on the pain doesn't always go away.

    Sometimes moaning is all you can do.

    I understand that feeling well re like you're were walking on broken glass - have had a few days of breakthrough pain (a flare-up) myself when usually I just live with a cetain low level of pain.

    Take care

  • what dose are you on with gabapentin? I started at 1x300mg per day, then up in 300mg increments every month and now am taking 1500mg. It takes a while to find the right dose and the max is I believe 3600mg. I have found if I miss a dose then I pay for it, so reducing your dose is not a good idea. Plus because you are weaned onto and off of gabapentin you really cant just decide to change the dosage by yourself. Be patient. I have been on it since october last year and havent found the right level yet but each time it is getting better. The sleepiness does ease off I found as after every increase I was felled but my body adjusted to the new dose

  • i have just started gabapentin but i am still in pain does it take some time 2work it about 2week that i have been on it 1x300mg a day a long with every think else doctor said i should not feel any pain with what i am on lol

  • My dotor told me it could take 2 month to get in to my system as we start slowly with increasing dosage hun.I have just started what is my maximum dose of 1200mgs.

    And feel a bit wobbly on my legs,but managed today to get up after a sleepless night and with help

    of friends get spring cleaning done.

    We had a good laugh and I took plenty of little rests and I delegated,but boy I`m feeling it now and cant wait till I take tablets again(usualy 11pm)but reckon it will be a lot ealier as did not sleep at all last night and have had my first realy heavy day since before xmas.

    Mentaly it has done me the world of good as I hate muddle,and I`m not overly house proud but it hadn`t been touched since before xmas,and xmas eve. i came down with the worst dose of flu I have ever had,then a urinary tract infection,and to top it all a good friend and myself had a horrendous virus that we are both only just getting over a month later.

    Plus the death of her Mum, and I had known her for 44yrs she was like my own Mother.My little Yorkie was so ill 3 weeks ago. I had the fear I was going to loose her that and giving her water via a syringe every hour for 24hrs before seeing the vet (who also has fibro) knocked me sideways again.

    It seemed never ending and I will be in bed all weekend,but at least bits that need sorting i.e sorting under wear and nighties and paperwork I can do in bed.

    I feel better because it is done, but I know I will have a flare but will work through it best I can,with the help of my friend as live alone,but as I have said it is worth it just to see the place looking better.

    So after boring you to death what I`m trying to say is give it time,and let it get in to our systems.My worst side effects are a bit worse fibo fog and whisper,constipation.

    But yes I`m finding a difference and if I can ween of morphine all the better.

    So don`t try to run before you can walk Hun.

    Lots of love and hugs Butterfly xxxx ;-)

  • Hello, I'm new to this site, but have reading everyone's pain ;0( . The past 12 years of my life have been blurred into, it seems, a year of misery, pain and frustration. I was diagnosed with a Chiari.(malformation of the brain stem) the symptoms were headaches, worsening with activity, severe neck and shoulder pain, and siezures. I had decompression surgery. No avail. In case you are wondering where this is going.. My fibro (after surgery) reached an all high in pain. Not only do I hurt everywhere, but now have what feels like a cattle prod(I hear it feels like electric shock, have never been prodded myself;)..) I have tried everything for pain. Then my Dr suggested Methadone. I was reluctant to take it, mainly due to the stigma surrounding the pain medicine, so with heavy heart I tried it. I have to tell you all, I'm on 10mgs (not much) and it helps emmensly!! Of course nothing is a miracle drug, but i would loose my mind without it.

    Sleep? That's a whole different issue. As of this post I have been up 36 hours. It helps to surround my body with body pillows, to rest my arms an legs on. I hope maybe these things may help even one person with this lifelong battle. May God Bless You All!

    Shonna in SC

  • Hi Shona and welcome to our family,just wanted to axk if you had done a blog to introduce yurself.Tjat way we all know you are here.

    Got to make this short as 1 I need wee lol and 2 my hand is going numb so if you haven`t done that a big hello from me.

    Sorry welcome is so short Love and hugs Butterfly xxxx

  • hi sunnielee - welcome to this lovely family xxx :)

  • \hi jinty pain in the morning = tell me about it! i have been in bed awake for about 2 hours in increasing pain abd finally got up 15 mins ago bent double and shuffling along like a 90 year old. i cannot hold anything in my hands = no grip, typing is difficult and body racked in pain. this fibro has stepped up a few notches in the past couple of months. i hate it! if ther were not 4 people i really care about i would not be here tomorrow. need to go =ibs xxxxxx

  • now the dole have said i have to get a job i said find 1 were i can lie down every now & then our just sit down she said i can see your in pain i wanted to say i wish you could feel it x

  • Thanks for all the replies guys!!! Much appreciated. I will do a proper inro blog next time im on as seems to be falling asleep on computer! Good to know what is helping others (or not) nite (I hope!) x

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