Pain in bed

[Hayls]

I’m having a lot of pain in my ankles, hips and sometimes knees in bed, I don’t want to take beclofen as I’m not adequately homed and don’t have the lifting equipment to not be able stand which beclofen makes my leg muscles relax too much, Does anyone know if CBD oil will help, has anyone tried it, if so, any side effects I need to be wary of, hope everyone are staying safe out there xx

[Sportingmac]

Oddly - my leg muscles are all floppy - sad degradation from the legs that were used for 100/200/400m sprints and long jump. I tried Baclofen for a while - didn't seem to do much for me at the time - might try again - see what happens.

I get a lot of reliegf from stretching out in bed - when I can my legs into position to push straight. Top tip: use leg garters (knee straps from amazon but used above the knee instead of below - if you can see what I mean) to manipulate the legs into any position that is comforatable - and they help me get out of bed too in the middle of the night to go to the loo. That is risky to say the least - but next Tuesdays op will fix that issue.

My mattress is past its sell by date I think - has a dip in teh middle - so a new one is required - hoping that will help with the hip pain.

Time for a night cap

Chas

[Ellie]

Don't underestimate the benefits of a good quality sleep Chas!! It makes for better days, which, for us who need every bit of energy we can get, is important - not just a Brucie Bonus So, whether it's pain, breathing, anxiety or whatever that stops us getting good quality sleep, fixing the issue reaps rewards!

I wondered if the pain in your thighs is due to high muscle tone? It's a big muscle and, particularly if you've been in a sitting position for most of the day, might not like being stretched out, impacting on your hips and groins too. That's why I suggested Baclofen - of course your doctor would have to see how your tone is first.

Glad your wine glass hand is still up to the job

Love Ellie.

[Sportingmac]

Hi Ellie,

Thank you for the information - I'll have a chat with the OT about the air mattress next week when she calls in. I think I'll be able to turn as I do now - I have a bedhead with rails that I use to grab and turn - works well with bed sticks. Sadly arms are - especially the right one - is much weaker now - but fortunately the left arm is my wine drinking arm Legs have gone south a long time ago. However - NHS doesn't supply double bed size air mattresses - I currently use a double bed because I can't turn in my own space and therefore roll from side to side. I tried a profiling bed but was way too narrow for me to roll/turn. I use a small double bed for now.

I am trying to get the NHS to supply a bariatric bed - it is wider and will give me that turning option. I only weigh 90kg if I'm lucky

I take Amtriptyline at night - varying dosages tried - but I have settled for 2 at night coupled with co codamol - sort of works.

I am putting my daytime weakness down to lack of a good recovery sleep at night - but suspect it is just a progression of the 'Stephen Hawking Syndrome'

Regards

Chas

[Ellie]

Hi Chas,

Firstly, make sure you get an alternating air mattress, not one in which the mattress is just filled with static air. I cannot turn in bed but sleep pain-free and very comfortably all night on a weight-adjustable, alternating air mattress. The interval between the alternating air cycles can be set according to your needs - mine has a range between 30 secs and 5 mins and I've mine set to alternate every 90 secs.

I can't see why you wouldn't be able to turn on an air mattress if you have the ability and means to turn on your current one, but maybe I'm missing something?? They're not jelly-like. If you've strength in your arms, you could use a bed rail to assist you.

Do you take any antispasmodic meds at night, e.g. Baclofen?

Hope you get relief - a good sleep is important for us!!

Love Ellie.

[Sportingmac]

Air Mattress and turning in bed

I am getting more pain in my hips and thighs and have to turn quite often - and that is quite a struggle. I have a mattress from the NHS but it seems not to be cutting the mustard anymore - so looking to move up to an air mattress. I am told that I won't be able to turn on an air mattress and like a few others on here I can't sleep on my back. I would hope that the air mattress would help relieve the hip pain enough so that I don't need to turn.

Can anyone comment on air beds and turning from side to side?

Kind regards to all

Chas

Anyone got any advice on how to get a sling on in a hospital bed. My partner gets it on ok in queen bed because there's more room to turn me , hoping there's a simple solution , but in my experience nothings ever easy Thanks Andrew

Why don't you try a slide sheet? I had trouble turning with shoulder & back pain & like you I can't lie on my back. I had a slide sheet from my district nurse & found it easier to move, don't get me wrong it's still a struggle but a lot easier.

Tried sleeping on my back in my queen bed last night . Had a few pillows behind my head and shoulders , woke after 3 hours with a lot of pain in my lower back . On the plus side no pain in my shoulders, so just need to find out what i can do about the back problem . Any tips appreciated Thanks Andrew

[miranda]

hello tried sleeping in my hospital bed the other night because i'm struggling to turn over in my queen bed in which i have to turn hourly because of shoulder pain and it's disruptive to my sleep as it sometimes it takes ages to turn . Was hoping the hospital bed would be the answer to my problem but it was worse i had really bad pain in my shoulder blade and had no way of alleviating the pain as I can't turn at all . I had an air mattress which goes up and down during the night to prevent pressure sores and had both my arms on pillows . The head of the bed was raised as i can't breathe when i'm flat and had my knees raised up. If anyone has any suggestions on how i could do anything different to have a better sleep i would be grateful Thanks Andrew

. My OT suggested Wendylett sheets. These have a wide central panel of slippery fabric which makes it easier to turn.

[stev50]

Hi Andrewoz ,, i have tried different variations of beds for my wife D who along the journey is now quadraplegic. Having tried top of the range, i am told by the ot, which did not work for D, we have settled on a standard air flow mattress with addjustable pressure setting. Everything after that becomes inovative for D and what she needs to be comfortable. Getting all the bits to touch and the bits she does not want to touch for a good nights sleep is a challenge. I love JAY TEE,s post, explains it all i guess.
Regards Steve

[JAY TEE]

Andrewoz, I was given hospital bed year ago and it is wonderful. I always used to sleep on my right side but now sleep on my back. I can still get into the bed off the sit to stand hoist. My wife lifts legs around. On my feet i have big pads put on this stops any pressure sores on ankles. I tilt the bed down then lift legs up a bit and my back up a little so that your head is above and your stomach is below. We have put extra bed pad on the mattress as well. I have a grabber on the right side and use it to pull me around to get out of bed. From the grabber to the rear rail I have line of rope and hook the control on it and control got bit string tied on so if dropped doesn’t disappear. The district nurse liked that, and my foot pads.
Best wishes John

thx wendy i'll try that next time it sounds like good advice . my ot suggested putting a small rolled up towel between my shoulder blades , to help relieve pressure i think.......... Andrew

I have a variety of different sized and shapes of cushion all feather and as I find the hollow fibre ones created pressure points. I also have a medical grade sheepskin that alleviates and any tender areas..

I sleep with my elbows bent at my side with my forearms supported on pillows, so it is really important that the pillows are not too high. They need to be just supporting the weight of the arms. If they push the upper arm and shoulders up it causes pain in the upper back and neck.
it takes a bit of experimenting, I hope you find a comfy solution soon.

Wendy

[Sueb]

Steve has cushions under both arms and puts his hand across the front of him. He has cushions and a v pillow for his head. He raises his head and legs until he's in a comfortable position. But it's all trial and error. The tissue nurse sorted Steve's mattress. He also takes oramorph and paracetamol because he gets pain in his shoulder and neck. Hope you get sorted soon.