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  • FIRST POST
    • soolin
    • By soolin 2nd Feb 09, 5:27 PM
    • 62,931Posts
    • 45,305Thanks
    soolin
    Fibromyalgia (part 2)
    • #1
    • 2nd Feb 09, 5:27 PM
    Fibromyalgia (part 2) 2nd Feb 09 at 5:27 PM
    Starting a fresh thread as promised.

    Thank you
    I'm the Board Guide for the Ebay Board , Charities Board , Dosh & Disability , Up Your Income and the Local MoneySaving-England board which means I volunteer to help get your forum questions answered and keep the forum running smoothly. However, do remember, board guides don't read every post. If you spot an illegal or inappropriate post then please report it to forumteam@moneysavingexpert.com (it's not part of my role to deal with this). Any views are mine and not the official line of MoneySavingExpert.com
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Page 3
    • bigzippy
    • By bigzippy 3rd Feb 09, 7:31 PM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    Oh, and welcome back S/e ! We missed ya!!
    "I am indelibly stained by hope and longing" - Nuts in May
  • sharon59
    we had loads snow here but stupid hubby felt he out to get to school as Head wanted to keep it open then took 1 1/2hrs t o get home in awful conditions-hugged him despite then saying l bl**dy told you not to go!!!!
    Its now getting very icy on top and it looks scary.
    Slept for 4hrs this pm -feel better for it -back felt great till stood up but never mind so so so hoping it will improve but 6days after jab no different.
    Fancy one of those beds but cant justify it sadly.
    love to all x
    this money saving is such fun
  • Careful with that Axe
    Am feeling rubbish tonight. Not sure if it's a cold, a flare up or both.
    Suspect lack of sleep might be something to do with it. I'll have to retire to bed early.
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
    • bigzippy
    • By bigzippy 3rd Feb 09, 9:21 PM
    • 4,033 Posts
    • 15,643 Thanks
    bigzippy
    Know what you mean about lack of sleep. Even though I'm going to bed earlier than I was, cos our routines have changed due to OH's job, I'm knackered - cos in the new house the curtains aren't lined and the daylight comes streaming in!! Wounded.
    "I am indelibly stained by hope and longing" - Nuts in May
  • raeh
    im not sure il manage to say anything understandable as i feel so foggy!! i slept on and off all afternoon as i had to walk to school and back :rolleyes: poor kids just kept taking themselves off out snowballing.
    Its my day off tomorrow and ds1 is off as its progress day at his school which means everyone gets a 10 minute appointment to discuss their childs ... progress! if the roads are as bad as they were today im afraid they wont have anything important enough to say to me that i will risk driving! we havent had any more snow but the roads were getting very slushy earlier which just means they will all freeze over night and thats worse

    our mattress is a normal sprung mattress with 3 inches of memory foam on top which we chose as we were warned about the heat from full tempur ones!

    thats it iv used all my brains cells on that! so i hope everyone manages a good nights sleep tonight and keeps warm xxx
    2009-7500 2010 10800 2011 2000


    Thank you to everyone who posts comps xxx
    • black paw
    • By black paw 4th Feb 09, 12:53 AM
    • 1,775 Posts
    • 1,147 Thanks
    black paw
    use to sell beds. yes tempur are sort of rubbish and expensive , you lay on it, sink down and never to turn again just try getting off , if you try one in bed shop you need to lay at least 20-30 mins to see ! they get hot and people can be allergic to them . they need to be very thick as a narrow 8 " thick one ,is when you lay on it compresses down to about half an inch unless...your ultra light weigh ..i wish .then your laying on the hard board backer under mattress. . after trying lots , i thick the best is a fully sprung mattress ( soft bouncy one ) with a big layer of tempur on top ..best of both worlds ..cosy cosy cosy
    the truth is out there ... on these pages !!
    Last night I lay in bed looking up at the stars in the sky and I thought to myself, where the heck is the ceiling.
    • Unity
    • By Unity 4th Feb 09, 11:11 AM
    • 1,493 Posts
    • 3,180 Thanks
    Unity
    This and that
    Hello everyone,

    S/E - adjustable beds. Ours has the divan base and we find it quite easy to just use the space underneath by raising both ends of the bed at the same time . We have those narrow storage boxes (where I store my summer clothes for fifty weeks of the year ) this goes at the top end and the bottom end is used for the Imelda Marcos collection of shoes . It's quite easy to judge where the bed descends to IYSWIM and so long as you leave a bit of clearance - especially around the electrics it's fine. I prefer this to having it on legs as you don't get so much dust underneath. My favourite aunt (more like a grandmother as she was 20+ years older than my mum) used to physically pull her double bed (heavy wood frame - with two mattresses) out every week to vacuum behind it, at the age of 81 - I am nothing like her . Ours also has a memory foam mattress but with a very thick zipped cover and I have never slept on anything so comfortable - don't find it too hot and it is firm enough that you don't sink into it - but I think it was fairly specialised as there was a huge choice when we bought it.

    Suep - I too am thinking very carefully before deciding about holidays. We went for two weeks last year leaving DS in charge of our two cats, but he will have to seriously re-think his sleeping habits, as getting up in the afternoon does not fit in with a cat who stands at the door with her paws crossed and a worried expression first thing in the morning .

    BZ - It is extremely hard to manage without your internet connection - I missed ours whilst we were away on holiday last year, how sad is that?

    Trialia - Glad to hear you had a good night's sleep and hope the Lyrica keeps working for you.

    Sharon and Raeh - I hope your snow has gone, I hear we could be in for some more tomorrow, but just hope the weather forecasters get it wrong like they did on Monday evening .
    Some people hear voices, some see invisible people. Others have no imagination whatsoever
    • Unity
    • By Unity 4th Feb 09, 11:54 AM
    • 1,493 Posts
    • 3,180 Thanks
    Unity
    Doc's appointment
    DS had his appointment first and has been referred to a knee clinic, to see if anything can be done to stop the repeated episodes he gets with his medial ligaments. He's really quite gutted about not being able to play football - okay he's no Djibril Cisse, but he's always been good enough for Sunday league teams and it's the social aspect as much as anything.

    He also got the results of his MRI which among other things says: "There is subtotal opacification of the left mixillary sinus probably due to mucosal thickening and fluid", so he's being referred for this as well. Am I right in thinking this means washing out his sinuses?

    The doc had asked me to get DH to call and see him after I mentioned we weren't happy with the specialist we saw regarding his pleural plaques. At the appointment the specialist said that because DH gets breathless, he wanted the lung function tests doing before he decided when he would need to see him again. Suffice to say an appointment arrived for a year's time and when we queried this he backtracked and said it wasn't necessary. Doc says he will speak to specialist's secretary today and if they will not move on this - he'll refer him to one of the other areas adjoining ours.

    My neck x-ray shows degeneration with disc space narrowing and osteophytes - so pretty much what we were expecting.

    Doc is going to phone the pain clinic secretary to ask when and how often I can have the facet joint injections plus the epidural. He was also more than happy to let me continue with the Durogesic patches until the warmer weather - especially when I told him that I had needed to increase them slightly to get through a pain crisis. Since he'd said he would need to monitor me daily on the methodone I said I would rather wait until the weather is more settled, as it's bad enough getting parked nearby in good weather - never mind inches of snow.

    I mentioned constantly feeling cold and the impact this has on the pain - even when DH and DS reckon it is tropical in the lounge (28 degress) and he asked if I wanted this investigating, but I said I would wait until later in the year and if I am still feeling frozen in June we'll have a rethink .
    Some people hear voices, some see invisible people. Others have no imagination whatsoever
  • saffiedale
    I do not know how I would manage without my adjustable bed - in fact it I think twice before going on holiday these days, because I can't take it with me . I do find I sleep in some peculiar positions to get comfy and sometimes I wake up curled like a paper-clip . I don't go to bed during the day at all, though I often fall asleep on the sofa, so I am always glad to see my bed - it's about my favourite place to be honest
    Originally posted by Unity
    hi all, i love my temper mattress i look at my bed so much in the day when im in agony. cannot go any longer than 8.30pm without getting in.mmmmm and it scares me with the thought of holiday beds/
  • saffiedale
    im not sure il manage to say anything understandable as i feel so foggy!! i slept on and off all afternoon as i had to walk to school and back :rolleyes: poor kids just kept taking themselves off out snowballing.
    Its my day off tomorrow and ds1 is off as its progress day at his school which means everyone gets a 10 minute appointment to discuss their childs ... progress! if the roads are as bad as they were today im afraid they wont have anything important enough to say to me that i will risk driving! we havent had any more snow but the roads were getting very slushy earlier which just means they will all freeze over night and thats worse

    our mattress is a normal sprung mattress with 3 inches of memory foam on top which we chose as we were warned about the heat from full tempur ones!

    thats it iv used all my brains cells on that! so i hope everyone manages a good nights sleep tonight and keeps warm xxx
    Originally posted by raeh
    thought mine was temper? i lied. its coil sprung with memory foam ontop. i lovvvvvvvvvvvvve it, must admit that its true about heat my dh gets so sweaty. yak:confused:
  • suep
    How was your Dad suep?
    Originally posted by Careful with that Axe
    Hi cwta thanks for asking, I had a bit of a shock yesterday when he opened the door, he's had his hair cut really short almost cropped,he's not lost it completely but it's got very thin and patchy, he's always had lovely thick hair. I know it will grow back but it was just the initial shock when he opened the door. We didn't talk about it much as we would if we were on our own as dd came with me, he talked about the holiday he's planning once he get's the all clear (fingers crossed) so we just ended chatting about holidays and were we'd like to go, which is everywhere for dd

    He has his last chemo session tomorrow
  • kassandra
    Oooohh, a new thread!!

    Ha! Unity very good! Liked the pig thing!


    "Problem is I love piercings, shaved heads and tattoos, but also like comfy shoes and elasticated waist trousers "
    CWTA that is so true of me too!

    I don't know how to use the quote thingy

    When I got back I had to get a spatula and clear all the snow from my car. People must have thought I was mad but I couldn't bear to touch it and there was about 6/7 inches on it!

    S/E lovely to finally meet you, Was the bed expensive? I've been thinking about that kind of thing. I was even looking at electric scooters the other day but felt like a fraud. It would help immensely but I really do feel like a fraud as I'm only 30 and feel like I don't qualify!

    Does anyone know of wheelchairs that you don't have to wheel, like electric scooters but in a chair that you can fold up into the back of the car?

    BZ, I looked at those letters you put a link on and was howling! the twins came running in from the kitchen with a look of concern and confusion. They are used to hearing me make weird noises and crying and things and regularly come up to give me a cuddle when I'm badly but they really didn't know what to do! I was laughing that much that I was making a snorting sound while crossing my legs cos I thought I was going to wee and crying at the same time (with laughter). The look on the kids faces made me laugh even more, they didn't know what to think! I really needed that. "It's your hamster Richard"

    On the internet thing.......I don't have a phone line and refused to get one in the new house since eldest spent 25 quid in one day on games on sky then my mates daughter came to live with me and spent 160 quid in the space of 12 hours ringing the boyfriend

    Anyway, what I did was get one of those mobile dongle things. I got one already loaded with twelve months worth of usage. It was 100 quid but works out cheaper than buying one for 50 quid then paying 15 pounds a month. You can only get them from certain shops that are already loaded like that, just wanted you to be aware. I only went three days and felt like my arm had been cut off

    Trialia is Lyrica the same as pregabalin? The doc has said she might try me on that.

    Kass
  • Trialia
    Kass - yep, Lyrica = pregabalin.
    Homosexual, Unitarian, young, British, female, disabled. Do you need more?
  • kassandra
    Suep glad to hear it's the last sesh!

    Has anyone had experience in waking up in the night with pins and needles? It's happened a few times and the first couple I took no notice of as it was one hand and it was the arm that I was laid on. Then it happened where it woke me and it was both hands and I was laid on my back so I thought I couldn't have been laid on a nerve. The other night, I woke up, I was laid on my left arm but my right hand was killing with pins and needles but it was also really swollen up and felt really tight to even touch. I'm just asking because I tend to think everything is due to the fibro but I've been told we should be careful not to do that as you could miss something else going on.

    xxxx
    • bushbaby1103
    • By bushbaby1103 4th Feb 09, 4:27 PM
    • 4,800 Posts
    • 7,782 Thanks
    bushbaby1103
    on the subject of beds; I was watching QVC last year and they had their goose down filled feather bed 'topper' things and pillows on offer. I bought one on impulse and have never looked back. It's so comfy and warm in the winter it's like lying on a cloud. And I have a medium firm proper mattress under it for support...once I get in with my leccky blanket and two kitty cats I don't want to get up.
    I would like to try the temper mattress just to see how they feel, but the ones I've seen are quite pricey, will have to wait for that elusive lottery win :-)
    Yes, it's true hell IS other people
    And remember the problem is them, not you.
    Devilsand demons walk among us in human form.wake up people, it's a man.
  • sharon59
    IF it helps...
    Suep glad to hear it's the last sesh!

    Has anyone had experience in waking up in the night with pins and needles? It's happened a few times and the first couple I took no notice of as it was one hand and it was the arm that I was laid on. Then it happened where it woke me and it was both hands and I was laid on my back so I thought I couldn't have been laid on a nerve. The other night, I woke up, I was laid on my left arm but my right hand was killing with pins and needles but it was also really swollen up and felt really tight to even touch. I'm just asking because I tend to think everything is due to the fibro but I've been told we should be careful not to do that as you could miss something else going on.

    xxxx
    Originally posted by kassandra
    I get this in both hands and often wake up with swollen hands and pins and needles.Gp said the pins/needles is because the swelling causes pressure on nerves.Its a bit like carpel tunnel l think.hope this helps!
    this money saving is such fun
  • Careful with that Axe
    kassandra, I've had the pins and needles thingy. So much so that sometimes my arms go numb, including one memorable time when my arm was over my head and numb. I tried to lift it up and it came down and wonked me straight in the gob :rolleyes:
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
    • tjak
    • By tjak 4th Feb 09, 6:13 PM
    • 137 Posts
    • 1,213 Thanks
    tjak
    I have been lurking around for a while now, but was diagnosed last week with fibromyalgia after 4 years of seeing every speacialist in the area. I still work full time and take amitryptilene 70mg to manage pain and keep me going. Does anyone else still work full time, or is it just me and my days are numbered?
  • suep
    Kassandra yes I get the pins and needles in my arms and hands, most nights they dont seem to swell up though but it feels like it.

    You can get electric wheelchairs, but Im not sure if they fold up small or not. My friend has an electric scooter and shes 32, she's getting a mobility car soon and is going to have a hoist fitted in the boot to pick her scooter up and put it in, I'm so jealous, I would have so much more freedom with that, whenever I want to go to the shops I have to get someone to push me in the wheelchair which I hate, it would be lovely to be able to go out on my own again.
  • Careful with that Axe
    suep, my local paper has lots of mobility scooters for sale 2nd hand. Or do you need the car part aswell?
    Do you have a motobility scheme in your local town? You could get a lecky scooter from them and at least get out on your own.

    Welcome tjak. I think it depends a lot on the individual and the circumstances regarding work. Sorry. That's not much help really is it.
    I must go, I have lives to ruin and hearts to break

    My attitude depends on my Latitude 49 55' 0" N 6 19' 60 W
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