Laying In Bed Alseep And Chronic Pain .

[willows]

I've had a look about the site but couldnt find anything about this subject ,that is if anyone else has this problem

At night when I lay down to go to sleep at first I drift off ( helped with between 40-80mg of controlled drug painkillers) and all is well .

BUT and this is where things go badly wrong ......................if I lay ASLEEP for more than 4 hours without getting up and moving around for 30 minutes to 1 hour , well by the morning I'm in BIG trouble .

So imagine that I've gone to bed at 9 pm ( my normal time as I'm so tired each day ) and for some reason I've slept undisturbed until 7 am in the morning ( something I haven't done for about 25 years ) when I wake up the first thing that hits me is the pain in my chest , around the rib area , then pain in the back around the kidney area and then down both legs and up to my hips .

I cannot get out of bed and have to call for help , because I'm on my back and like a crab and just cannot move my body at all . Mark and Mike have to pull me out of my bed , little by little as the pain on moving is so bad I can shout out with the pain and have tears running down my face .

On standing me up I can only take tiny steps and have to use my zimmer frame for balance and to help me take some of the weight of my hips . The hips pain is like someone has tightened the screws in all my joints and any sudden movement is so bad its like an electric cattle prod being stabbed into the part that I've moved to quickly .

I cannot do stairs, sit down ,get into a bath ( ha -ha ) I cannot stand for long still or hold anything and this lasts for between one and two hours .

Although I have signs of arthritis's showing in my finger joints and wrists the hospital have still said my hips are good for my age .....whatever that is .........

Yet , here I am now at 2:30 am in the morning , I'm so tired I keep making the most stupid mistakes on the keyboard and having to spell check everything twice , my eyes are killing me and I just want to sleep ................but I know that if I go to bed and do fall asleep from say 3am until 8 am the pain that I get in the morning will cancel out all the good the 5 hours sleep has given me in the first place ( if this makes sense to you )

So............does anyone have this problem ?????

And yes, I have a special mattress on my bed , one of those expensive things that your body moulds to , and it doesn't work , a normal mattress doesn't work either as we have tried that as well , dont want a water bed as Mark would puncture it within a few hours with his machine that helps him breath and the floor wouldnt bear the weight and we'd end up in the lounge with gallons of water cascading around our ears

So if anyone has any ideas on how to help me ..........................well ,I'll try anything as my tiredness is getting worse and worse each day and I'm at my wits end now.

Ami .

[all4family]

I also get a lot of pain at night when I am sleeping. And like you said it does seem worse if I sleep for longer. I get like a numb hevy chest, arms, stomach the whole lot. And when I wake up it takes me just a bit of laying there, then I can move, and stretch around before I can get up. I unfortunatly don't have any ideas for what to do about it, except that on nights that I wake up a lot to go to the bathroom I don't have the problem as much. I did post about this earlier. I think it was numbness when I sleep. So sorry you are going through this...hope your sleeping now. Take care,

Suzy

[Kitsakatsa]

Have you tried sleeping in a recliner? I have heard that people who have similar problems find relief in the recliner. My cousin had great success after her car crash and was told by her surgeon that the curve of the recliner is most natural to baby seats and therefore the normal curvature of the spine. I guess you would really have to shop around for the best one with the right rigidity.

Also, I have read that the mattress that you have actually will cause you to wake up more frequently because the cushioning effect of closure around your body will trap heat and moisture that would otherwise dissapate and evaporate. The rise in temperature prompts your system to take action (awaken) and move (physiological response to prompt increased circulation). The awakening and moving could cause an increase in muscle fatigue if it is constant and repetitive and there is some stuff that suggests that doing that all night leads to a buildup of lactic acid (the component of sore muscles) especially if you have to crawl out of your current position. Since we have craziness with circulation anyway, I wonder if you might consider a mattress that does not "hug" you back. Have you heard of those sleep number beds? I've always wondered if those are worth it.

I hope you are asleep now..! I'm not because we have thunder!

Kits

[helen.t]

Hi There, I too get a lot of pain when I'm static too long and have real difficulties moving at first. I presume it is due to the lack of regular blood flow round the body which seems to be a big problem for me and prob a lot of people with Dysautonomia. I waken very frequently during the night so I can turn myself or move a bit to relieve the intensity of the pain. Could you maybe set some alarm clocks to wake you at frequent times throughout the night so that you can move a bit? A recliner would be no use to me as I have excrutiating tailbone pain and have a problem sitting in that position but it might help you. I do hope you find a way of helping you cope with this. Good Luck Helen

[mcaimless]

Have you been worked up for rheumatoid arthritis or any other autoimmune disease? One of the main criteria for RA is morning stiffness lasting more than 1/2 hour and you sound like you got much more than that.

Have you had your rheumatoid factor, ANA, sed rate, CR-P checked? Even if these come back negative the definitive diagnosis for RA is an MRI of the hands (or in your case wrists too) to check for synovitis.

Also your extreme pain can be from an accompanying fibromyalgia (I have both RA and Fibro and it took me over 2 years to get diagnosed-- my symptoms at first were dysautonomia and POTS and they progressed to joint pain and the classic fibro symptoms). Fibro pain can be some of the worst around and you sound like you're in that category too.

I'd really push to see a rheumatologist who is versed in both RA and fibro and get all the appropriate tests if you haven't already.

[willows]

Thank you all so much for your replies.

I cannot sleep siting up or semi sitting up as I to have tailbone problems , if I sit for a few minutes on a hard chair the pain can be excruciating and I am known for carrying a cushion around with me to events ( not a rubber ring as its back pain nothing else ) , so a recliner is a no go for me either.

I do have a very low heart beat and at night this can and does fall below 40 beats a minute setting off other problems , I also have raynaud's so I know my blood isn't getting around my body as it should do and I also wake up every hour or so to turn over , without an alarm clock as the pain after this time kicks in very strong and I have no option but to turn ...........or should I say try to turn myself over , sometimes i dont manage this and have to actually get myself out of bed in order to get back in again , which causes my husband to sit bolt upright asking me what I'm doing each and every time ...............of course when I say I'm getting back into bed he always asks 'where have I been to ' !!!!

Out of all the mattresses we tried over the past 6-7 years the moulding one is the best for us both as my husband has neck/spine /hip and knee problems to , so its not just myself I have to think of when seeking a new bed or mattress. I do get hot ...........BUT my body is completely of its trolley when it comes to temperature control and whatever I wear ,eat or drink and even how I sit or stand effects my heating and cooling mechanism and I have been like this for 10 years now ( think of having the menopause at its very worst 24/7 and its 50% of what my bodies doing to me ) I could sleep in a fridge and still burn up !!!!!!!

I will ask my local doc to have my rheumatoid factor, ANA, sed rate and CR-P checked again , but the problem is finding a rheumatologist who has any sense or real brains here in Devon ,unfortunately I have seen a few times in the past but because I 'dont fit into there little boxes as having a normal condition ' after doing a blood test they call it quits and send me away saying we cant help you , although I did once many , many years ago have one doctor who thought if she brought me into hospital and put me through a very strict exercise course including water exercise and everything else that they give very stiff arthritis patients ..........well ,she thought that three weeks of intensive therapy that this would be the cure all of me .............my local doctor was horrified and thought that this so called specialist had not read the letter about my condition ( pots) or she wouldnt have suggested such a stupid thing to someone who has three heart problems , lung problems, hearing , sight , blood pressure and many other nice little nasties , it would have been a case of the opersite to cure for me , if you get my drift after all I've only got to be out for an hour walking around town or shopping to get tired and leg pains and if I push myself just that little bit more OMG angina, vomitting , blackouts, blood pressure shooting into the skies then my boots, yep, some real intensive therapy would work wonders for the local co-op undertaker !!!!!!!( its OK he's one of our best friends )

Thanks for your help guys ..............yep , I'm up and its 1:45 am UK time.