Bed

[babebatista]

I've just seen a post about a mattress and remembered something I wanted to share with you all. Since I was 16 I've been diagnosed with scoliosis and since 2010 have developed arthritis in the bottom of my spine. Now up until 3-4 years ago I could sleep in a bed. Now I wanted to let you know what has happened since then so that if you have experienced problems like me that you find the information helpful to you. So it started that in the night I was too sore to lie down in bed not all night anyway. I would come downstairs and sleep upright in my armchair with my legs stretched in front of me on the couch. This continued for many many nights. I was just in too much pain to lie flat in bed. My back pain shot through the roof as soon as I lay down. Now I was at my doctor's for my diabetic foot screening and the subject of sleep came up with the nurse and so I told her how I slept of a night time. Well this shocked the nurse who wasn't very happy that I'd been sleeping that way for over a year and a half. So I was referred to occupational therapy. They came out to see me and I showed them how I slept of a night time. This was the start of a very long year where my OT and I tried all manner of mobility aids to get me back sleeping in bed. We tried everything but it didn't work. Everything I tried didn't give me any help at all. I just still couldn't lie down in bed. It got to the point where we had tried literally everything. I got talking to a friend about my problem and she said to me, "Have you tried a riser/recliner chair?" I wondered what one was and she explained to me that it helps you get out of your chair by raising you up so it's easier to get up and easier on the knees and then it reclines to give you the experience of lying flat but your not. So I rang my OT and asked him if I could try one of these chairs. I went to our local Medequip to try one of the chairs and it was wonderful! It felt so good to have that experience of reclining so that it really feels like your lying flat but your not, your more in the position of a V shape. So I got one of the chairs at home and I have had many wonderful nights of sleep. Even if I am in extreme pain with my back I still can recline and not be in pain and look forward each night to a good night's sleep.

You may be like me and found it difficult to sleep in a bed. Going for a CAT scan or MRI if absolutely awful for me. About a year ago I remember I had to go for an MRI, now of course you have to lie flat for these scans and if I do lie down flat I literally experience massive pain straight away so you can imagine how awful I felt at the prospect of this scan. I went into the room and someone helped lower me down on to my back and took a few deep breaths to ready myself. The scan itself isn't the problem, it's the lying down. About 5 minutes later, I got told that the machine wasn't working and we were going to go next door to try the other one. So I went next door and lay down on the machine ready for my scan. I was in that room on that machine for 10 minutes when they told me there was a problem with that machine but the one next door had been fixed. At this point you can imagine how truly awful my pain was. I went and lay down on the machine and had my scan. An appointment that was supposed to take 20 minutes eventually turned into about an hour and I just wanted to get home and go to bed. If you are having trouble lying down in bed and you have tried absolutely everything why not try one of these chairs. It may be the best thing you ever do! It's worked for me and has meant more successful night's sleep than ever.

Gentle fibro hugs to you all

xxxx

[honeybug]

😊🙏🤗💗😘🌿🌸🦋

[Hidden]

Made me think , thanks 💜💜💜

[johnsmith]

I have read your story. The story tells what appalling lack of help that there is out there.

Did you get any help with the over tight muscles that were causing the pain? Was the only medical help you received pain killers?

[desquinn Partner Volunteer FMAUK Trustee in reply to johnsmith]

Its funny how two people can read something and come away with diametrically opposed views. The above shows the dedication of an OT trying to help but unfortunately the situation in front of them is not one that lends itself to an easy fix.

I am now sure the OT will have a recliner chair on their list of options to try in a similar situation when the obvious does not work.

I see this in IT frequently that we have some persistent issues that are not easy to pin down or solve. We have the luxury of swapping body parts from a known good machine and switching things off so it does give us an advantage over health professionals

[johnsmith in reply to desquinn]

The help given by the OT was impressive and helpful.

There is a very impressive set of books in 3 volumes. Now in 7th edition

The Physiology of the Joints by I. A. Kapandji.

I bought my first copy many years ago. I have just bought the latest 7th edition. My first copy had easy to follow diagrams in black and white. The latest edition has the same sort of diagrams in colour.

The Physiology of the Joints Vol 1: Upper Limb

Physiology of the Joints: Volume 2 Lower Limb

The Physiology of the Joints - Volume 3: The Spinal Column, Pelvic Girdle and Head

The books are about £35 each on amazon.

My guess is the pain that babebatista is due to one set of muscles in the back pulling one way and the muscles in the legs pulling another. Working to untightening these two sets of muscles will have solved the problem several years ago. The pain that babebatista is experiencing is pressure being applied to the nerves that generate pain.

The reclining chair solution enables the leg muscles to be not as tight. So there is less pressure being applied to the pain nerves.

The understanding of how muscles work is missing from the training of the medical professionals. Prescribing of a pain killer takes 5 seconds. Manually untightening a set of over tight muscles can take 20 minutes. The procedure can hurt as well.

The untightening may have to be repeated several times for reasons which I won't go into now. So this treatment is time consuming. Something the NHS does not like.

NhS Physiotherapy is 5 minute evaluation followed by instruction to do a particular exercise while the physiotherapist deals with another patient. Teaching the correct way to make a movement can be very difficult and depends on much the patient is in touch with their body.

Repeat prescription of pain killer is not time consuming.

It is worth you getting a copy of these books. It will help with developing a different understanding.

You say: "I see this in IT frequently that we have some persistent issues that are not easy to pin down or solve." As a computer programmer I have written code where I have put a comma in the wrong place and crashed the operating system.

[desquinn Partner Volunteer FMAUK Trustee in reply to johnsmith]

reclining chair is appropriate here as you are performing armchair diagnoses and professional criticism from afar. Sometimes the issue in front of you is beyond your capability or beyond your training. Escalation is the proper route for this but on occasion there are problem patients whose condition does not allow itself to be easily solved.

It may be a comma they are looking for to use your analogy but finding that in thousands of lines of code is challenging even with experience. But sometimes it is a problem that does not lend itself to present techniques or understanding. I do not know if this was a training issue, or experience or simply bad luck but I do not feel able to give opinion on the professionals expertise.

[Dizzytwo Moderator]

Thank you for sharing this with us. I'm sure it will give many of us food for thought

[Dinkie]

Been unable to sleep in bed for 6+years and have used riser/recliner for all that time - still not getting much sleep but better than nothing Hoping once the spinal injections and the two new hips are in place I will be able to get more than a couple of hours. The riser bit of the chair is the one I couldn't do without as it means no pressure on the arms to push myself up and out of the chair. They certainly are a godsend