Thoughts

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Thoughts

Postby Butterfly8588 » Thu Aug 18, 2016 11:40 am

Hi,
Not been on for a while but I've got some thoughts I'd like an opinion on if you all wouldn't mind.
Basically my life keeps me busier then my condition likes at the moment and I'm paying for it in pain. I've often been up all night struggling to sleep and sleeping late to no particular time before and I decided it might be good for me to try to get some semblance of a sleeping pattern. This is not only to accommodate my life but also because I've sunk in to a deep depression that I couldnt shake and I don't want to take anti depressents for another reason.
The problem is that if I have a bad night like I did last night (or should I say a worse night then normal) then the pain is worse and it leaves me wondering if I'm doing the right thing forcing myself into this routine. If I'm not going out that day then although I force myself to get up, I'll allow myself a nap a bit later which helps slightly. But if, like today, I need to go out then I obviously don't have time for a nap and the pain stores up.
Admittedly I don't help myself at times, I've got an aversion to taking tablets and because I've needed a lot of pain killers recently I don't like to take them all the time in case I become dependent on them again. It took a long time to get myself off the painkillers and horrendous side effects and I won't put myself through that again. I'll only allow myself naproxen and co-codamol every now and then when it's unbearable and it only takes the edge off. Nothing stops it.
Do you think this is a good idea to have a lose sleeping pattern? What are your experiences, good or bad?

Gentle hugs xx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Thoughts

Postby Claire'scomfycorner » Thu Aug 18, 2016 12:33 pm

Hi Butterfly :-)

I too struggle with sleep, getting to sleep is my main problem and sometimes staying asleep. I'm a teacher and when I am working I force myself into a routine, this is really difficult, some nights I don't sleep more than 4 hours but I keep to my routine and I will have nights where I 'catch up' on my sleep (I sleep for about 10 hours!). I'm on holidays at the moment so my routine is askew, I sleep when I can now, napping if needed during the day if I didn't sleep well the night before.

When I am tired and haven't slept my pain is worse, I take pain killers because I wouldn't be able to live life without them.

I don't know if my reply helps in any way.

Hugs
Claire
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Re: Thoughts

Postby LindyM66 » Thu Aug 18, 2016 5:54 pm

Hi Butterfly,

Like Claire, if I didn't take the meds - I would be totally goosed. They allow me to have a life. Without them, my whole body is racked in pain and I seize up totally.
I have no problem falling asleep, but I do wake early. Being honest, I did this before being diagnosed. The only problem with waking early, is that, by lunch time, I feel knackered and could sleep. Again, like Claire, I work in education, and my students might find it odd if the old bat starts snoring the roof off :-)
Its so difficult to get into a sleep pattern when you have fibro, as no 2 days are the same and if you have been kept awake by pain, then you catch up on sleep when you can. It's a double edged sword at times, isn't it?

Much Love
Lindy x
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Re: Thoughts

Postby scoke » Thu Aug 18, 2016 8:01 pm

I had got so I was getting an average of only 4 hours a night. Not only finding it hard to get to sleep but to stay asleep and to go back off again. So little sleep meant not so much that the pain was worse but that my concentration was poor so fibrofog was appalling. I was also getting terrible anxiety which kept me awake so i started to really work on getting a routine, for a couple of years i went to bed at 10.30, put out the light at 11.30 and did not let myself sit up again until 6.30 - I decided 7 hours was a good target. I found it extremely difficult and didn't always manage it but now - another year down the line, I'm averaging nearer 6 hours a night. I still get some dreadful nights, often because of pain, but my anxiety levels are so much lower, i have slept more than 8 hours three times this year (hadn't done that in living memory!) and i can relax the routine a little now in that I don't have to turn off the light at 11.30 if I don't feel ready to sleep and I will sit up from 6am. It is not easy but I think you might find that it helps!
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Re: Thoughts

Postby Butterfly8588 » Thu Aug 18, 2016 9:56 pm

Thank you so much for your replies.
Claire and Lindy, I admire you both for being able to work with children full stop, never mind adding fibro in to the mix. I to struggle to get to sleep and stay asleep. When I wake up in the night I can be up for hours. I also have very vivid dreams/nightmares that leave me feeling like I've had no sleep whatsoever and I'm exhausted.
I completely understand needing tablets, I was on so many but the problem was that it never took the pain away and any small relief they gave me wore off quickly and I'd have to add something else which never worked very long again. I was just collecting tablets, and side effects. I couldn't stand it anymore and now I can barely force any tablets down my throat because I feel sick and my throat closes. All mental problems I know.

Scoke, thank you for your reply again, it's lovely to hear a success story and gives me hope to carry on trying my best. I don't always succeed but I do more often then not. The problem I face is that if I lay awake in bed to long then the weight of the quilt on me or my legs pressing into the bed just gets more and more painful and it's so bad it stops me sleeping. Vicious circle isnt it.

Gentle hugs to you all xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Thoughts

Postby scoke » Fri Aug 19, 2016 4:16 am

I know what you mean about the pain when you're awake for long! I forgot to mention that my husband and i have our own bedrooms. Doesn't sound nice but we have a couple of spare rooms, he comes in for a while each evening and the next morning unless I'm very tired. He still works full-time and I can't lie still; I have gradually developed the most comfortable way to sleep.
Tempur or at least a memory foam mattress, several pillows to adjust my head position depending how dizzy/bunged up I'm feeling, and to change completely if my ear goes numb, also a small, memory foam pillow for between my knees; loose-fitting nighties which cover my hips easily and which will stretch over my bent up knees, with sleeves, loose and long enough to well and truly cover my shoulders but not feel restricted at all.
I always have water beside the bed and tend to sip each time i wake and I always turn over, every time I wake - it keeps the worst stiffness at bay, resticts the likelihood of cramp (I always would find myself stretching as I woke which almost always gave me cramp), restless leg attacks i have to get up and walk to ease, but, other than the need for the loo, i can manage to stay lying down.
My anxiety attacks are less-frequent, helped by sleeping better and by having a fitbit which shows my pulse rate. I often wake with my heart pounding, feeling like it's racing but, I've discovered that that has never been the case since I've been checking it, which has put my mind at rest and so decreased the incidence and severity of the attacks.
I have used other sleep aids: the bach flower remedy for sleep for a short while, a white-noise machine (tropical rainstorm was my favourite), a couple of simple mind strategies: either saying 'the' randomly or doung 'three things'; that is, thinking of three things you can hear at that time, then three things you can feel then three random objects, down to two of each, then one of each, by which time you're usually asleep. Neither of these work fir me now but they are the main way I managed to improve my sleep oattern
I don't take any pain meds, side-effects worry me and I can't function properly on strong painkillers or sleeping pills. I get overwhelmed when I try to change/deal with too much at a time.
I must say that getting my sleeping pattern is the single most successful thing I have done towards helping myself; my pain is much eased.
I wish you luck!
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