Back support

Posted , 6 users are following.

Althouth I can sleep reasonably comfortably my PMR makes it a nightmare getting out of bed and the excruciating pain then lasts several hours. It is the pulling myself up that seems to tear my muscles and I feel that if I could somehow pull  myself up with the aid of some contraption, or else sleep propped up by something firm it would be of condiderable help. I suppose what I'm seeking is something that will replicate beds in hospital where the back can be moved up and down. Anyone got any suggestions.

1 like, 10 replies

10 Replies

  • Posted

    It is possible to buy beds like that - but they are pretty expensive. It is also possible to get a hospital bed at home if you really need one but they tend to be for patients confined to bed. Ikea also sell different sorts of bed base with some that have raising head sections - they are very common over here on this side of the channel!

    Far more to the point would be to sort out your pred dose because your PMR isn't being managed at all well. Either you need a slightly higher dose or you need to alter how you take it to minimise morning pain and stiffness. 

    If you leave taking your pred until breakfast it will take until about lunchtime to have a good effect. Taking is as early as possible in the morning is recommended and many patients take a sandwich or yoghurt and a drink of water to bed with them, take their pred when they wake early to go to the toilet and then settle down for another couple of hours by which time the pred has not only had a chance to combat the inflammation underlying the pain but it also had less to do.

    The pain and stiffness of PMR are due to inflammation in the body which is caused by substances caused cytokines which appear in the body at about 4.30am. The longer they are left "unfought" the more damage they cause. Studies found that the perfect time to take our ordinary white pred tablets is 2am - this gets the prednisolone level in the blood to a peak by about 4-4.30am, ready and waiting to stop the cytokines doing their dirty work. A few people have tried that, taking their pred in the middle of the night with excellent results. Most of them wake then needing to go to the loo, one or two actually set their alarms! If you can't face that thought, then taking the pred as early as you possibly can is the next best thing.

    For a few people taking 2/3 of their pred dose in the morning and the rest in the evening works to avoid severe morning stiffness - that may affect your sleep, it may not, all you can do is try. It is all to do with the fact that the antiinflammatory effect of pred lasts from 12 to 36 hours or so. If you are unlucky and for you it is 12 hours then splitting the dose might be good. I could take pred on alternate days and still feel fairly fine on the second morning.

    All this is based on the thought that you are taking ordinary white non-coated pred tablets. If you are on the coloured (red or brown) enteric coated pills then they take about 6 hours or so to achieve their peak level in the body - so you could take them before bed and they would be starting to work before you get up in the morning.

    Some people also find that using an electric blanket BEFORE getting out of bed gets the circulation in the muscles going enough to make that first morning movement less awful. How you get out of bed also makes a difference: it may be better to turn onto your side (if you can) at the edge of the bed and then push yourself upright so you are sitting on the side of the bed.This is recommended practice for anyone with back problems and I have used that technique for many years so it is automatic to me anyway - but it was the only way I could get out of bed in the 5 years I wasn't on pred for my PMR. 

    • Posted

      Thank you Eileen. I will try taking the prednisolone at aroiund 2am as I often need a wee at that time, or splitting the dose. Because of my GCA I am taking 30mg at the moment and am reluctant to reduce. As ever your advice is most helpful and welcome.
    • Posted

      If you are on 30mg then it definitely sounds as if you are one of the unlucky people for whom the effects don't last 24 hours. Experiment a bit!
  • Posted

    Hi audrey, it sounds to me that you are either not on the required amount of pred to allow you to control your pain or that there is an additional underlying problem. We managed to get a frame for my ma in law that opened into a "V" shape and went under her pillows which allowed her to sleep siting upright. Hope this helps and good luck.
  • Posted

    HI Audrey,

    We have one of those beds it's a superking size with a memory foam mattress, each side works independently which is a godsend, it was a real bargain even after paying a white van man over £80 to collect.

    At the moment there is a king size one for sale at £300 on preloved, I was very lucky with my find it is in immaculate condition, it cost me more to buy the new bedding as the bottom sheets have to be single to allow the separate actions then the superking duvet etc.

    I must say it's the best ting I've ever bought, can't wait to get into it.

    My husband is disabled and pre the new bed had some aids from his Occupational Therapist, which could be provided free of charge, your doctor could put in a federal.

    Ultimately

    I hope Eileens expert advice works for you, oh to be free from pain.

    Kind Regards

  • Posted

    When I started on Predisone 15 mg/day for my PMR I woke up every morning right where I had started the day before. All the aches and pains were back. The meds only worked for about 18 hours of a 24 hour day. I upped my meds to 20mg per day and took 20mg the next morning at 7 am and 10mg that evening at 7 pm. From there on I took 10mg on the 7's morning and evening. The next morning I was comfortable. That program has you on 20mg part of the day and 10mg part of the day. It may be unconventional but it worked.

     Once the inflammation gets under control I would  think that you could get back to a single morning dose only and start a slow reduction in dosage.

    Charlie 44644

  • Posted

    Hi Audrey,

    I had a similar problem with entering/exiting the bed at first.

    I went out and bought a zero gravity chair (one for outdoors, because of price...$150.00). I put a blanket on it and it became my sleeping headquarters until I got the prednisone sorted out, very comfortabel and easy to use.

    It also works for people with back problems.

    It now sits outside mainly and is a visitors favorite.

    Shawn

    • Posted

      I have a Lafuma zero gravity chair - love it to bits! Not sure I'd like to sleep in it though. 
  • Posted

    well you can buy an electric bed expensive but mt Brother has one and says its the best thing he ever bought.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.