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Tikitiboo?
25th April 2015, 09:25
Dear All

I have carers coming in every morning at 7 am to get me washed and dressed. My husband used to do it but his back has 'gone'. To make matters worse I am difficult to get out of bed and that too is painful.

My problem is that from about 5 am I suffer from excruciating back pain and it seems an eternity waiting for them to arrive. This morning it was so bad that I had to ask my husband to get me out and .... guess what ... his back is now painful.

Obviously my problem is being in one position all night and cannot move. However any tips, if any at all, would be most welcome.

Hugs
Anna

Terry
25th April 2015, 12:08
Hi Anna;

Don't know what your situation is regarding Bed, mobility and equipment. A hospital bed is much better as it moves. Mattresses can make a difference as can raising your legs.

Hubbies back is quite important and try to stress to him to take it steady, (most men don't have a problem with that).

Contact the District nurse, hospice OT and your Ot about your back and see what they suggest. They might get you a special mattress, hoist or some help to turn you at night. Don't rule anything out as Mnd is hard enough without to many other things.

Unfortunately the back suffers with our worsening posture, lack of activity and wheelchair use.

Hope you get something sorted, Love Terry

Ellie
25th April 2015, 14:33
Hi Anna,

Agree with TC’s advice about getting the OT on the case as a matter of urgency.
It might be as simple as popping a pillow under your knees or getting an air mattress to alleviate the back pain.
Have your carers been shown proper manual handling techniques for getting you out of bed?
Two hours lying in pain is awful! Have you a way to get hubby’s attention to get pain relief/muscle relaxant medication?

Love Ellie.

Tikitiboo?
25th April 2015, 17:39
Dear Terry and Ellie

Thank you for your responses. My carers move the sheet to get me to the edge of the bed. I do have a hospital bed that lifts my legs, and an air mattress (thanks to research on the Forum) but I will mention it to my OT and everyone else! and try the pillow under my knees.

Thanks again
Rock on ...
Anna

Tikitiboo?
2nd May 2015, 14:54
Dear All

My morning backache continues ......

This past Tuesday my backache was so bad that I was literally screaming with the pain. I used to pride myself on being able to put up with a certain amount of pain.

Fortunately the Macmillan nurse visited me the next morning and went straight to the doctors and arranged for me to have some liquid morphine. I took it at 2 am and awoke at 6 am with no pain.

Great I thought ... Problem solved. ... Wrong!

The next night I took the morphine at midnight and then woke up with excruciating pain at 4.30 am. When I mentioned it to the carers I was told that this liquid morphine only lasted 3 hours and I would be better off with patches.

I cannot get these until I've been assessed next week. I have, in the meantime, been provided with a Pain Relief Programme which consists of Paracetamol 4 times a day and Tramadol twice a day.

I have been told that a Larazipan, a muscle relaxant, may help.

The saga .... To be continued. However, any suggestions would be most welcome.

Hugs
Anna

john
2nd May 2015, 16:02
My wife used to suffer from back and shoulder pains and Voltarol rubbed into the site of pain just before bed seemed to give her relief through the night. May be worth a try if you haven't done so already.

John

Tikitiboo?
2nd May 2015, 16:23
Dear John

Thanks for that. I will try tonight - I have some Flexiseq which I think is similar. I hadn't even thought of that!!

Hugs
Anna

Ellie
2nd May 2015, 17:48
Hi Anna,
If the gel doesn’t work and you have a muscle spasm, Diazepam might be better than Lorazepam as a muscle relaxant but make sure it isn’t contraindicated with any of your meds.
Ellie.

Tikitiboo?
3rd May 2015, 11:03
Dear Ellie.

Thanks for that. I took all the pain killers that the MacMillan nurse suggested and the Flexiseq and it worked well until 6:30 which is better than 2am. However I'm not happy about taking pain killers constantly as I may get constipated. I could try the Diazipam.

It's trial and error again. Oh the joys of living with MND.

Thanks again for thinking of me

Hugs
Anna

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