Early Hours

[Sandra]

Hi all, hope everyone is feeling their best. I have a problem that plagues me and I just can't seem to deal with it very well. I was hoping there is someone else who has had better luck.
It's about pain and stiffness. I have allot of it and of coarse it's at night when I'm trying too sleep. It keeps me awake often or wakes me after a few hours i just hate the pain of coarse but also the aloneness of it. When everyone else in the whole world is quiet and comfortable and safe and recharging I am hurting, stuggling and alone. So frustrating! My dear hubby is at my side which makes things les alone but come early morning he is up and off. That's the worst time, I then hurt all by myself and wondering if I will be blessed with a not too bad day or will I be stuck at home dragging myself to endure the few things I can do at home. It's too early for me to get up and get going then as usually I haven't slept enough through the night so I try to catch up for an hour or two after taking my meds and some advil, rising finally at about 8:30 or 9:00. Seems after that I can get up and moving things feel a bit better. But I just dread the nights and the early mornings every single day. How I long for those pain/stiff free mornings, those open up my eyes and jump up ready for the day mornings.
Anybody deal with this? Maybe you have a better way of dealing with them? Thanks, Sandra

[ruby52]

I feel ya.I wake up anywhere from 2:30 on and have to get up at 6AM.I take a Tramadol  before getting out of bed and come downstairs to lay on the sofa and have a cuppa.Hr. later I struggle up the stairs to shower and dress after collapsing on the bed for a min.Every morning 7days a week.Sometimes I feel so stiff and achey I can't lay in bed another min. so no sleeping in for me.I can't nap during the day for some reason so I always feel sleep deprived.The best I can do is go to bed earlier and earlier but you know what that means?I lay longer awake.I've tried different meds and nothing has worked for long or at all.My DH is sympathetic but yeah you feel all alone living like this.You just plug along doing what you can do and I'm really grateful for good days and make the most of them.Hang in there your not alone.
                                                                                                   Ruby

[allium]

Hi Sandra:

I don't have the level of pain that you and many others have, but my hip, leg, knee, and neck pain often wake me early, with terrible dry mouth, and I can't go back to sleep.  Aleve used to work for this, but it doesn't cut it anymore.  Hydrocodone does work but only for a short time.  I also have been diagnosed with fibro (not so sure about that) but I believe I have an undiagnosed autoimmune process affecting things, maybe SjS.

I am noticing some difference when taking Plaquenil for about a month now, hoping it's positively affecting my pain level.  I have started to take a heating pad to bed with me, a microwavable thing called a bed buddy (you can buy them on line and in stores).  I put it on my worse hip pain, and it helps a little. 

I know what a time you have getting to see your doctors, but it really sounds like they are not adequately addressing you pain and they should.  Have they tried Lyrica, or Neurontin?  A pain clinic?  It could be hitting on the right combination of medications finally that will turn things around for you.  Chronic, intractable pain is a enormous thing to deal with.  It's understandable that you feel worn down and alone.  I know I do too.  Coming here for support has meant a great deal to me.

I recently had a sleep study down, which showed no apnea, but numerous waking periods, including the early morning.  I said "It's pain".  Well, maybe you are too anxious.  "It's pain", I repeat.  How do these people get on this goofy track that you give yourself pain and everything else?   

I wish I could be of more help, but please know even if you feel alone, we will think of you. 

Sheila

[wednesday mc haggis]

sandra

i can relate to the feling of lonliness, i have ben sleeping bettter mostly due to commencing amytryptyline at night. I can say that im not a person to feel lonely , even as a single mum i cant say i felt that lonely mostly, last 6 months even when in company i feel this sense of loneliness, only time i feel truly understood is here.

For some reson last week i felt this so much i asked my partner not to go to work to take the day off, i just didnt want to be alone, i know it sounded crazy to him, and he said he had to work, and i knew he had to, but i just didnt want to be in the house myself, never felt that in my life before.

   Thoughrs with you sandra, talk to your doctor and see if there is any bette rpain relief, they can give you, hope you feel less lonesome soon

T x
   

[beverley]

Sandra,

I probably don't have your level of pain but I also suffer with aching joints and dry mouth and eyes at night.  I also have trouble getting to sleep and the aching can become intrusive.  However, I have improved the situation a bit by buying a memory foam matress and neck pillow.  They really have made things a bit better as they support the whole length of the body all the time.  I haven't quite got over the knees though.  I guess the only way to ease this is to sleep with a knee cushion between the legs, but I'm such a restless sleeper it wouldn't stay there for long.  Perhaps you ought to try a change of matress or pillow - you never know it might slightly improve things.

Beverley

[Sandra]

Beverly actually i have often peered at my bed and wondered if things would be better if I made a change. But it is new and really a good one so I just never have. I have a foam pillow and do use it from time to time but find the foam very warm as it snugs around my head. Do you find the mattress' warm, I have often thought it might be a thought.
Thanks Sandra

[eyeamdry]

Sandra, I don't know if you are cold most of the time like me, but my hubby is a virtual heater and when he's in bed, even if I can't sleep, I can get some comfort from his warmth.  He hates it when I get into bed and put my ice cold feet on his legs.
Perhaps a heating blanket would help comfort you.  Or a heating pad you could put where ever the pain was bad. 

This isn't perfect, because i also get hot flashes and then I have to throw the covers off.  The heat wouldn't be very comforting if it was summer and you had no A/C.  My hubby gets up really early and I sleep quite late, but I miss the heat when he gets up.  Lucy

[beverley]

Sandra,

I'm a warm body in bed no matter what the materials, so I sleep with the duvet just across my middle and my legs and shoulders hanging out (not a pretty sight!).  I haven't noticed it is warmer, but the relief from the support is worth it believe me.  I know what you mean about a new bed though.  You feel like you're throwing money away, but I don't know if you work - I do and I couldn't function if I didn't get some quality rest (not always sleep unfortunately).

Try one in a shop and see what you think.

Beverley

[Patze]

Hi Sandra,

I'm so sorry that you're feeling so awful!  I sure can understand your sleeping dilemma!  The first couple of years were absolutely miserable.  I couldn't sleep for anything.  I would walk around my home throughout the night, or sometimes just lay there for hours until I was very sleepy again.  I went to the neuro and an ENT who both advertise that they help those with sleeping issues; I guess it wasn't to be for me (neither doctor bothered to recommend a sleep study, go figure). 

Finally it was the rheumy who'd had enough of me going to these doctors and them doing nothing at all.  He finally sent me to have a couple of sleep apnea tests.  Ah, finally an answer (partial that is  )!  Been on the CPAP for almost a year now, and with the addition of Lyrica and Flexeril, it sure does help with the stiffness and the sheer exhaustion!  I still have days where my body feels like it's been beaten, but they are far apart these days instead of all the time.

Have you had a sleep study done?  If you have, any sleep apnea issues?  I have mild apnea, but I have times that my oxygen levels will drop without any reason (a part from the apnea episodes), very strange.

So please hang in there and remember that you are not alone! 

Take care -

Patze

[salsen]

Eight hours of sleep has long been a thing of the past.  Neuropathy pain loves kick into high gear late at night.  If I am luck I can fall asleep at 1 am, and if not it is around 3 or later.  Of course I am up to see my husband off for 5:30 am to see my hubby off and back to bed I go.  On good days I am up around nine not so good days around 11.  I have also begun having problems with vertigo upon waking which really puts things to a bad start.  There is no such thing as bouncing out of bed anymore.  Bouncing to quickly causes major dizziness and nausea.   

The best part of my day is now late afternoon and into the early evening hours.  I feel pretty human.  Of course there are a ton of other things that disturb the sleep like being way too cold and not being able to warm up or being way too hot and not being able to cool down.  I have learned to slug my way through it and nap whenever possible. 

I do know your problem and there is little I can suggest except rest when you can.  If you do find a solution please pass it on.