Hi all
I have noticed that my PMR seems to get worse as soon as I get into bed at night. It is too painful to even adjust my position and I end up lying awkwardly sometimes. Has anyone of you helpful people experienced the same please?
I am also wondering if the heated bed may also be a causative factor? By this I mean the external heat causing blood vessels to come to the surface to cool down bringing irritation to superficial nerves🤷🏽♀️
Is it coincidence it is when you get to bed? Could it be that the antiinflammatory effect of the pred has worn off about the time you go to bed? Were you OK in the beginning when you were on a higher dose of pred? Have you tried splitting your pred dose to extend the effect to next morning - it is suggested you take about 2/3 of the total dose in the morning and the rest later enough to carry you over until the next morning dose is due. It is worth trying.
Where is your night time pain? All over? Spine?
Hi PMR pro
During the day I have aching shoulders and hips this is much worse as soon as I get into bed!! The above areas feel as though they are burning… not from the heated blanket I hasten to add😂
I simply cannot move due to the pain!!
I am presently on 5mgs of Prednisolone, I increased the dose from
4.5mgs last week as the pain was too much.
When I was initially diagnosed, I was taking 15mgs with overnight results! My pain decreased from
10/10 to 2/10 and has been well controlled until I reduced to about 6 mgs. Several times when I have managed to reduce to 4.5 mgs, I have needed to increase the dose back to 5mgs. This seems to help but the pain is still there.
I did try taking my dose at night for 1 night! Absolutely no improvement at all.
I am very reluctant to increase the dose anymore due to insomnia and also the increase risk of adverse effects from steroids….,
I must add that I increase my doses following the advice of my kids who happen to be medics. My GP is aware of this but still wants me to continue reducing the dose.
I do appreciate the insomnia aspect - really do - but the bottom line is that you need to take enough pred to manage the inflammation. If you don't the inflammation builds up until the symptoms are as bad as they were at the outset - there is no point at all taking too little. The inflammation builds up like a dripping tap fills a bucket until it overflows.
You seem to need 6mg - you are taking far less. There is probably no alternative - take enough, or suffer from the symptoms. Your GP obviously doesn't understand PMR either - you don't reduce the dose if the patient is in that much pain.
Hi I think I agree that I need to increase the dose… sigh
Sigh indeed - but if that is what you need .
By the way - the day I took my first pred dose the afternoon craving for tea and carbs I'd had with PMR for months just went! I wasn't anything like as hungry, Maybe it was comfort eating due to the pain of undiagnosed PMR over years, no idea. My daughter also loses her appetite when on pred for her asthma.
And one suggestion we used to make wasn't for a mattress topper as such but a thick duvet to make a duvet "sandwich" which was softer than the average mattress topper.
Oooh ok. Interesting…
is it electrically heated?
Hi SnazzyD , yes it is.. why please?
Have you tried turning off the heated part? I ask because we used to have an electric underblanket many years ago and we both started to feel unwell with non-specific pain. Nothing bad like yours sounds but one day I decided to turn it off and the feeling stopped. I don’t know if it was malfunctioning but I didn’t go back to one again.
Even if it does have an effect, it still sounds like your dose is too low.
Hi. I got into bed last night with the heated blanket turned off.. I’m still the same. I think the answer is to increase the dose. The trouble is the higher doses depress my appetite!! Yes I know this is strange.
Just a thought. In any case your doae sounds too low.
The insomnia I understand but you need the pain relief. I found lying down painful early on and bought a thickn mattress topper which helped.. Useful to take with us if we stayed away
Hi. I have a mattress topper, I guess it would need to be about 12” thick to help😂
It takes me ages at night to settle due to pain,but i have to say my electric blanket is exactly right for me as the warmth really does help.I have the [ Snuggeldown Smart electric blanket it allows you to warm the parts of your body you want to heat, clever idea. Hope this helps .
maybe I should invest in a recliner bed..one where each side of the bed is adjustable on its own…
Hi there, think you already had all the advice about upping your dose to one which works. I have always had a problem with pain when I go to bed. Mine wasnt/isn't from my PMR though but my OA. I realised many years ago that staying in bed, either in pain or tossing and getting stressed about not sleeping was not getting me anywhere other than more stressed out. I get up, move about, have a drink/read. I also have an extremely comfortable recliner chair, where I can adjust the leg's, back etc to the angles which very happily manages the pain. I often spend the whole night asleep in the chair. I probable need one of those adjustable beds, where you can move all it's elements to different angles. Perhaps something like that would help you. Of course you do have to sort out the PMR dose as well.
This is interesting Bcol 😊
I am coming to the conclusion that a lot of my poor sleep and pain at night is due to OA . Glad to hear that your recliner is so good- I think I’ll need something similar soon. Onwards and upwards!
thank you
I suffered that as well and if I had been more involved with the experts on this site I would have increased my prednisone immediately as you clearly are on a too low dose.
It has taken me 6 years of yo-yoing but I am finally making progress at 6 mg and no pain, hope to reduce to 5.5 tomorrow. 🤞
Hi Alebeau, and snap!
Well, I’m a mere beginner having only been on pred for just under four years, but I’m also on 6mg and hoping to start a slow taper to 5.5mg this weekend. Good luck, hope it works out well for you 😊
Do I have PMR?
Just diagnosed with PMR
2 months into PMR, tried cutting back pred again, get pains but not PMR symptom pains?
Do we get annual reviews as PMR patients?
Recently diagnosed with PMR....Joined grp as I just hoped I could get clarity and advise.....
