Laying down for the night can be scary!

[jaclyn11305]

Anyone else dread going to bed cause your pain is already so bad and you know its going to be so much worse once you lay down!

[Mish1920]

Oh my God it was the biggest nightmare of my life! 20 minutes (if that) into lying down I'd waken like someone had glued my arms to my side and I was ripping the flesh when I tried to move them. And it went on ALL night!

Bed was always my sanctuary after caring for my special needs daughter all day but In the end I stopped going to bed and sat up all night in a chair. I've never known pain like it. Even the specialist who diagnosed me with PMR asked me how I got out of bed in the mornings and I told him when I had mastered the pain and was able to move I used my feet to get myself off the bed because upper body was too stiff and painful.

Since I was diagnosed 3 weeks ago and put on steroids all that pain has gone. I am now enjoying the mattress topper, bolster pillow and memory pillows that I bought during my painful time - that made no difference. I'll never forget sinking into them the night after I started taking the steroids....and enjoying the comforts..

Can't your pain be controlled?

Mish

[89TNA]

yes i am with you on that one.. lots of others say they are worse in the morning, yes i do ache in the morning but by the end of the day am totally exhausted and dying for sleep but once i hit the bed there is no way comfortable to sleep... toss turn toss turn eventually end up on my back with knees bent upwards to relieve the pressure off my lower back... but still every little ache and pain nags and pulses and doesnt let you forget it is there.... then when i wake in the morning after little sleep i find i have slept totally tensed up against the pain that my hands a clenched and teeth have been clenched all night.. my nails dig into the palms of my hands

and the times when the babies wake up in the night there is basically no sleep at all by the time i attend to them and get back into a comfortable enough position to sleep again!

Would love to hear a solution for this if anyone has one...........

[Mish1920 in reply to 89TNA]

I tried everything. I read somewhere to sleep with arms wide open, not to sleep on my side, to almost be in sitting position, but none of it made any difference until I was diagnosed and treated.

What do you take for the pain?

[Kazwilks in reply to 89TNA]

89tna

How old are you. Not being nosey just with you saying you are attending to the babies during the night. I'm 53 I stupidly presumed most people on here are my age or older. My heart goes out to you as some days when I've had a bad night and it goes into the morning I just want to curl up and die. My grandson who is 2 cannot understand why nana can't pick him up when he wants something. I am still working at the moment and I'm sure that's what is causing the pain mostly at night as I'm on my feet all day. It's not a solution but does help I have pillows everywhere if I'm on my side 1 in between my knees 2 at my back 2 elevating my elbow and wrist I do manage about 4 hours this way not enough I know but better than none at all. Take care Hun hope this helps

Karen

[89TNA in reply to Kazwilks]

Hi Karen, thanks thats ok to ask.. im 27 but have managed ok up till now & had no symptoms during pregnancy... only once i finished breastfeeding its come back with a vengeance...

yes im sure that is why too.. i never take the time to stop and sit during the day because i know how hard it is to get up and going again.. so by the end of an exhausting day then not being able to sleep its a vicious circle.

Sorry JACLYN didnt mean to take over your post. I hope you get some relief. and please post if anyone has other solutions or tips..

[jaclyn11305 in reply to Kazwilks]

Im 33 have a 2 yrold who gets up on occasion and its so hard to do my husband gets her in the morning for me thank god or it would be very hard. This all started after i had her. I take oxycodone for pain but it only works for a few hours and then im waking up in pain.

[jaclyn11305 in reply to 89TNA]

Im th same i end up on my back now but i was always a side sleeper we bought a adjustable bed a little under a year ago but my puppies chewed the wires so we couldn't use it i just bought the wires so i cant wait to get it working Again

[Christy_R]

Nights are the worst for me...I've slept in a chair for over 6yrs and it's not sleep its trying to subdue the trigger spots that the pain meds don't control. I have a rare orthopedic condition that makes every step hard because it gives me delayed muscle spasms so when I finally get to the down time of the day it takes forever for the muscle spasms to stop. This stuff is exhausting and I totally understand how you feel. I hope that someday we'll all be rid of these awful symptoms!

Thinking of you!

Christy

[89TNA]

i have recently started low dose endep at night to help sleep... it does help sometimes but not always.. in high doses it is an anti depressant

but its just trial and error.. keep trying i guess till we find something that helps please post it if you do!

[helixhelix]

Jaclyn11305 have you started taking your meds yet? The RA drugs won't help your scoliosis pain, but they will help elsewhere. I couldn't sleep at all when first diagnosed because of painful joints, but now it's fine for which I thank Methotrexate. Keep on at your doctors about pain control too as there are lots of things to try.

[jaclyn11305 in reply to helixhelix]

I havent started meds yet for the ra as i couldn't get into rheumy until August but im on pain meds. They help a little but when i say a little i mean a little. Thanks for the reply

[Beaches2 in reply to jaclyn11305]

Hi

I too had weeks when I couldn't sleep because of pain. It's so miserable sitting in bed with everything hurting, fortunately I was off work sick at that time so could nap or rest in the day. I used to "save" some of my daily paracetamol to take in the middle of the night to try and relieve things so I could nod off again. It certainly doesn't help when you're trying to cope with new diagnosis and all that goes with it.

Once I saw rheumy, they gave me a steroid injection to tide me over while waiting for drugs to kick in, that same night I slept.....all night....it was bliss!.....and once you can start sleeping properly again, everything else is more manageable.

I think the pain feels worse at night when we have nothing to distract us and when muscles protecting the joints start to relax.

I sleep fine now my condition is under control.

Keep believing it will get better once you start on treatment and you will get back to something more normal and be able to enjoy sleeping again.

[Fra22-57]

Used to feel all ridges etc in mattress til got a down topper.can only lay on my back as too much pain on sides struggled to get off to sleep having to keep moving arms up and down as werevever I placed them then killed.Was constantly waking in pain and having to put ibroprofen gel on wrists.doctor prescribed me amitriptyline and slept better. Only down side was I then struggled to wake up. Still kept waking with duller pain but drug kept me under.so now when first mass pain starts after 5 am I just get up

[JEM95]

I usually pop some Naproxen and co-codamol before bed - that helps initially, but I wake about 3am or 4am in pain. I start tossing and turning as I can't find a pain free position. It's mainly my hips and lower back causing grief.

At that point I have to get up and move around (which wakes all the pets!). Sometimes I can go back to bed for another hour or so, sometimes I can doze on the sofa and sometimes that's it - I'm up for the day.

I feel so tired. I work full time and my job is so busy - I feel like I'm just scraping by at the moment. Completely pooped, catching up with everything at the weekend. I have a house to run, gardens to look after and a busy job. My other half is a workaholic so I end up doing everything.

I am cheerful most of the time, but if I'm truthful inside it is getting me down. The smile on the outside hides the real me on the inside.

Big hugs to all those struggling and feeling tired xx

[jaclyn11305 in reply to JEM95]

I take a oxcoydone before bed but like you i wake up in pain usually from baby crying then its so hard to deal with her in the middle of the night now i used to havr so much paitents now i snap at the littlest thing cause of the pain im in i feel so bad.. Thank you for listening.

[andyswarbs]

I have always tried to understand why I can go to bed and feel comfortable and then as the night wears on pain begins and simply increases. It is as if my body is trying to punish me for having a rest.

[JEM95 in reply to andyswarbs]

I guess it's like during the day, staying in one position for any length of time means the creaks and aches catch up.

I find after driving for say half an hour I seize up again, so I guess laying in bed for X number of hours is the same.

[cathie]

Has anyone noticed that the painful joints and inflammation are worse if you sleep well, and better if you have to get up a few times? Perverse I think!

[jaclyn11305 in reply to cathie]

Yes but its been so long since i had a good night sleep i hardly can remember what that's Like.

[Peecue]

I have chronic pain, couldn't manage with ordinary bed. So asked for bed from community nurses U profile bed which didn't work eventually got an assessment and got a demo from Bakare beds and now have appropriate bed to suit my needs

[jaclyn11305 in reply to Peecue]

I have an ajustable bed we got about a year ago before my diagnosis put then we got two puppies boxers which chewed the wires so i have been without the adjustable part ill be fixing as soon as i can afford it. Glad too know im not the only one.

[cathie]

What do you do when you cant sleep? I know you're supposed to get up and then try again, but that's not always easy. I have an ipod with a radio on it and listen to that really softly (with headphones). If radio is rubbish I play podcasts which are quite soothing -

[Hidden]

Hello my heart goes out to you all. Sleep deprivation is terrible. Hubby has RA not me. The pain he was in initially at bedtime was unbearable. I put pillows everywhere as someone has already explained. Through the night I would warm up hot water bottles/heat pads/wheaty bags. Massage in voltarol to painful joints. He is now on methotrexate and sulfasazaline and sleeps reasonably well but can be awake for long periods. How the hell do you all cope with young kids is beyond me and can only be put down to a mothers love which transcends everything else!! We also bought a new mattress which is medium firm. Our other one is a lot firmer. As hubby lost weight I guess his bones needed a softer mattress. It does get better. We can't believe how bad the dark days were now. With the best of wishes xxx