I am wondering if anybody elsehave problems with sleeping? I used to find getting to and staying asleep a real problem but in the last few months this has gone the other way. My pain is mostly under control with medication at the minute but I am finding it impossible to stay awake. I haven't changed my meds so don't know why things have changed dramatically. I get home from work between 4 and 6pm and am asleep within 20 minutes, I sometimes wake about 10pm to take meds then go straight back to bed for the night. All I do is sleep and work, My gp has suggested that I start thinking about going on DLA and reducing my working hours but I'm reluctant to think about this at the minute because things might improve.
What I want to know is what kind of sleep problems do you all suffer with..?? What has helped you overcome these difficulties..??
I would urge you to get your application in for DLA immediately. You can still claim it and work, you just have the option of reducing your working hours. I would stress the importance of doing this asap as the lovely Con-Dems are about to change the benefit system and you would not be able to claim DLA. If you decide to apply, I'll help you through the process, as you need to make sure that you phrase things a particular way to get the level of assistance you're entitled to. Most of all, you need to send it Recorded Delivery, so that you have proof they recieved it.
It can take months to get the decision, so you need to apply NOW to be sure of getting DLA before the option is taken away forever. It could be worth up to £500 a month, so please go for it, you've paid for this through your taxes and national insurance. You wouldn't hesitate to claim if your house was damaged. I really hope that you've not been affected by the recent flooding, I'm lucky, my flat is on the first floor!
Anyone out there who could define sleep for me please? I'm not sure what it could be. Can you get it from the supermarket or ebay? Will I need a prescription from the doctor? Is it expensive?
My EM is not control by meds at this time. I go back and forth, I do have trouble falling asleep, once asleep I either: 1 - sleep very well or 2 - wake about every hour and toss and turn all night.
I read a post about a bed fan and am considering springing the $$ to purchase. I am waiting for a shipment that I hope arrives today, something that was recommended and I want to try first.
I don’t know if I can add anything helpful but here goes. For the first two years after this started I drank more and more whisky just to get me to the stage where I could drop off to sleep. Of course I woke within 40 minutes and that was it until 4am when I would be cool enough to go back to bed and to sleep, until the alarm went off at 6. My problem is that as the heat builds my limbs jerk. If I was terribly hot at bedtime I just stayed up until 3.30/4am, feet in cold water, legs wrapped in cold bandages. Then I saw a neurologist and he changed my life with Clonazepam. The jerking reduced to a twitch, the whisky bottle disappeared and if I started the cooling down process early enough I could at last go to bed at a normal time. No sheet, no blankets, fan on but no jerks. I sleep in short bursts all night most nights and even though I always feel sleepy I no longer feel utterly exhausted and miserable. That’s where I am at the moment but I find the illness keeps evolving and wonder what’s around the corner…
I really feel for you Lizzi, I know what sleep deprivation feels like, I've lived it for years on and off and it's hideous. BUT sleeping all the time is just as bad, my sleep is not restful, I don't wake feeling refreshed and walk around in a complete daze most of the day. I can't even sit in the staffroom at lunchtime because I know I'd fall asleep as soon as I did. Yesterday sitting in a traffic jam I was so fatigued I started looking for places to pull over for a nap. Sometimes I set an alarm to wake me to eat if not I sleep right through. I really hope that you find a solution that enables you to be able to sleep more with less pain.!
lizzi said:
Sleep? What's that? If only I were so lucky to have your problem. Lately, if I get 2 hrs sleep, I consider it a good night. I am so BEYOND sleep-deprived! I haven't found anything to help the pain yet. In May, things were improving with a combo of tegretol and clonidine, but seeing as I got worse again in June, I'm back where I started. All pain and no sleep!
Lol, I can always rely on you to put a smile on my face.! Fingers crossed you will find some too.
tillyp said:
Anyone out there who could define sleep for me please? I'm not sure what it could be. Can you get it from the supermarket or ebay? Will I need a prescription from the doctor? Is it expensive?
I've been to the pain management clinic this afternoon and he wants me off most of my gabapentin. He will then add in another medication instead which has less sedating qualities.He says gabapentin is not killing pain but just sedating me which is why I am so fatigued. He also spoke a little about Fibromyalgia and widespread pain and finding ways to manage my symptoms. This is going to be a long battle ahead I think. To say I'm scared about losing the one thing that's worked for me (Gabapentin) is an understatement but to be fair I'm also terrified my life is going to be like this for ever. I am only just coping with work but definitely not coping with running a home.... And social life, I have forgotten what that it, I have to say no to all invites because I know I will be sleeping.!
I've been to the pain management clinic this afternoon and he wants me off most of my gabapentin. He will then add in another medication instead which has less sedating qualities.He says gabapentin is not killing pain but just sedating me which is why I am so fatigued. He also spoke a little about Fibromyalgia and widespread pain and finding ways to manage my symptoms. This is going to be a long battle ahead I think. To say I'm scared about losing the one thing that's worked for me (Gabapentin) is an understatement but to be fair I'm also terrified my life is going to be like this for ever. I am only just coping with work but definitely not coping with running a home.... And social life, I have forgotten what that it, I have to say no to all invites because I know I will be sleeping.!
I too have trouble with being sleepy all the time.I have been falling asleep at work several times during the day.But I also sleep very good at night.I just got back from vacation and I feel like I need a vacation to recooperate!!
My doctor has reluctantly given me a low dose 3.75mg sleeping pill (zopiclone) which is not allowed for use in the USA I think. Only have 14 days supply and don't think he will give me a repeat. Has helped a little - 4 hours last night but flare from 4am which is still going on at 9.30am. He says he is more concerned about how it could impact on my breathing. Having recently come through a general anaesthetic I hope I can survive a teeny tiny dose of sleeping pill. Goodness only knows what I will do for sleep when I have come to the end of them.
At the same time I am so sick of taking pills every day and the side effects they bring with them. Now my thyroid is running very low according to a recent blood test so have been given more thyroxine which speeds up my metabolism. At 6st 2lb I am seriously underweight as it is. I reckon my shadow weighs more than me!
I'd love for our physicians/pill manufacturers to have to try some of the chemicals we are given just to see what we go through in the hopes of a bit of respite from the pain and misery we suffer 24/7.
Sorry, got my miseryguts head on today it seems. Must try harder.
We all have the odd day with a misery guts head on Tilly. I hope that the magic sleeping pill works for you, and I'm sure that if you have great results with it I hope the Dr gives you another supply. Has it affected your breathing at all..?? I have managed to stay awake until 8pm for the last 2 days but it's making me feel crap so might just listen to my body and sleep straight after work again tonight.! I have been given Duloxetine and will be reducing my Gabapentin in a couple of weeks so hopefully this will help me to stay awake a bit more. (Pain specialist thinks my high dose of Gabapentin is sedating me instead of getting rid of pain)
My miseryguts head seems to be a more frequent visitor lately, mainly I think because of the limitations my recent accident has caused. I seem to spend less and less time doing and more and more time thinking about all the things that need doing. Being shut indoors as I can't drive is a real bind, at least I then I could get a change of scene and I really hate being reliant on others to do things for me. There I go again, moaning on when so many are much worse off.
As to the sleep, I am having a better time of it these last few days. Just 1 pill a night along with paracetamol/codeine painkiller has given me some respite and the restless legs are giving me a break too - oh joy!
lauraflora1 said :
We all have the odd day with a misery guts head on Tilly. I hope that the magic sleeping pill works for you, and I'm sure that if you have great results with it I hope the Dr gives you another supply. Has it affected your breathing at all..?? I have managed to stay awake until 8pm for the last 2 days but it's making me feel crap so might just listen to my body and sleep straight after work again tonight.! I have been given Duloxetine and will be reducing my Gabapentin in a couple of weeks so hopefully this will help me to stay awake a bit more. (Pain specialist thinks my high dose of Gabapentin is sedating me instead of getting rid of pain)
<p>My legs and lower back hurt all night long and I sleep with the TV on and dogs on the floor trying to get a distraction from this crazy pain. Ice packs help a little but apparently are very dangerous to tissue. Fans and the window unit air conditioner help some. And no clothes and no shoes which is ridiculous. I am lonely and feel like an outcast. And stuff on TV really makes me feel disconnected since I used to be an athlete and the Olympics are coming. Everybody seems busy walking and moving and I am so stuck with this pain and redness and swelling. Miserable!!!
Mitt Romney's wife started riding horses to help her legs due to her MS. I think I am going to try that. At least I will be moving...using 4 big strong legs.
I seem to vary depending on what is my biggest issue at the time. Lately I have struggled to sleep at night because my feet get very hot & even the sheets touching them hurts sometimes. I also have back pain from other medical problem. Sometimes,I am so tired though, no amount of sleep its enough. I tried Gabapentin &Neurontin also but just couldn’t tolerate the side effects. Dr wants to try Lyrica but it is unknown whether it would be helpful & my Co-pay is $120. Wish I could find a doc that knows how to treat this.
I also have trouble with my blood sgar going way high from the pednisone...but last night I had it somewhat under control...a little low...and I had almost NO pain. I still think the aspirin controls the prostaglandins and seems to help. And the cool and dark.
It takes a while for the neurontin to regulate, but if you start at 100 and increase slowly (take at night at first) it does work ..it is a very safe drug...the serotonin uptakes like Lyrica are not so safe and made me feel like I was numbed emotionallyand in a daze.
Well I'm going round in circles. with a change in medication (Pain Dr said I was being sedated on last lot) I am now struggling to sleep again. I am tired all the time but finding it impossible to fall asleep and when I do keep waking up. Last night I went to bed at 9pm and was completely shattered. This is what my sleep pattern looks like at the minute
Bed 9pm
Sleep 11pm
Wake 12.10am
then 1.45 am
2.30am
4.50am
6.10am
7.00am
I then spend all day in a daze, not sure whats worse, too much or too little sleep..!
Oh Laura, I know just how you feel. Sleep is such a basic need and none of us EMers seem to get enough due to symptoms or side effects of drugs. Any sleep we do get does not seem to refresh us. Constantly living in a fog by day and restless all night.
My sleep pattern is much like yours except I go to bed around midnight after the usual flaring episode. I watch the clock go round through the night and usually have to get up and move around to help the restless legs. The lack of proper sleep is cruel. If I take a sleeping pill which takes about and hour and a half to kick in then I do sleep for at least a 4 hour stretch but I am so hung over the next day I have to take another nap during the morning. I only resort to the pill once or twice a week at most as it also depresses my breathing which is not good anyway. Don't know if my Doctor will prescribe them for me after this scrip runs out. Maggie Thatcher was known to thrive on 4 hours sleep a night. I would give my eye teeth for that if it was proper restful sleep.
lauraflora1 said:
Well I'm going round in circles. with a change in medication (Pain Dr said I was being sedated on last lot) I am now struggling to sleep again. I am tired all the time but finding it impossible to fall asleep and when I do keep waking up. Last night I went to bed at 9pm and was completely shattered. This is what my sleep pattern looks like at the minute
Bed 9pm
Sleep 11pm
Wake 12.10am
then 1.45 am
2.30am
4.50am
6.10am
7.00am
I then spend all day in a daze, not sure whats worse, too much or too little sleep..!