I was wondering is it common to experience the PMR muscle pain mainly at night?
I take pain killers before bed but wake up quite a few times with deep muscle pain in the thighs and lower outer calves.
Does anyone also suffer from tendonitis?
Hi Nola, I think that if you are on the right dose of prednisolone, then you should not suffer pain at night or at any other time as a result of PMR. Have you considered any other cause of that pain? I have had a slipped disc and have developed spinal stenosis and these kind of back/hip problems can cause massive pain at night, which steroids do not address. You might want to get that checked out. And, yes, it seems that tendonitis is quite common with PMR - I guess a weakening of the muscles, which is a side effect. Before my PMR was diagnosed I had a 'mallet finger' when taking a pair of socks off (!!) and then very painful tendonitis in my left ankle. Best of luck with finding out the cause of your night pain.
Tendonitis is part of PMR, especially in hands and feet and arms. I had sore knees that went away with the pred - maybe that was tendons too.
You don't say what dose of pred you are on, but I'd suggest that either your dose isn't quite high enough or that you are one of the people for whom the antiinflammatory effect of pred doesn't last the full 24 hours - it can be 12-36 hours depending on the person. Many people find splitting the dose as perhaps 2/3 in the morning and the rest in the evening deals with overnight pain.
Do you wake all through the night or is it in the early hours, about 4-4.30 or so? Every morning the body sheds a new supply of the inflammatory substances, cytokines, that cause the inflammation. pain and swelling of PMR at about that time - I used to wake then with agonisingly sore hips. If I woke earlier, say 3am, I could get up and go to the bathroom with no problems, if it was later, say 5am, I was so stiff and sore it was hard to walk.
Painkillers don't usually help at all in PMR (a few people say they get some relief but probably from add-on things rather than the PMR itself) - it is pred that you use to relieve the pain and that is why it is important to take a high enough dose. But as I say, splitting it sometimes gets enough effect from the same dose.
Unfortunately, even on the higher doses of pred not everyone with PMR is totally pain-free. A lot of people are very upset when their doctor has told them they'll be "back to normal" and then find they aren't! There are a few very lucky people who are pain-fee - even fewer are back to normal altogether.
Thanks Eileen, appreciate your advice 😀
Thanks for the advice, back to the GP I go!! 😀
Eileen is right on the mark. For me, it feels like a biorhythm that falls in sync with my body's temperature cycle. When I body's coolest – 3 to 5 AM – I flare. As my body warms during the morning the inflammation seems to ebb. In the afternoon I'm fine. 4:30am the next morning, and it starts all over again.
The only place I will differ is with this observation: I have found that if I take ibuprofen in the late evening before I go to bed, I always feel little better in the morning than if I do not. Somehow or other the ibuprofen seems to interrupt the inflammation cycle many hours later. Don't know why, but this is my observation.
I just read recently that since our body temperature drops at night the blood flow is less which contributes to the pain and stiffness. That is why once we move around and warm up the body it helps tremendously.
i was getting 3 sometimes 4 hours sleep at a time before waking up which was awesome, but now I'm back to waking every 2 hours, use bathroom, then go back to sleep though sometimes I don't go back to sleep. Today up since 4:00 a.m.
But I tested this warming up joint/muscle thing, when I awoke, my shoulders were killing me, so I gently moved them around, hung one off the bed side and let it dangle and then moved it in circles, let gravity help. Sure enough my shoulders felt better and I was able to move easier.
i took warm bath later to see what that would do, but it only helped a little.
I just wish I knew why I wake every two hours. I'm thinking the cortisol balancing is going on, wonder how long that takes to balance out.
Eileen as usual is totally correct. Not all of us are pain free. It took aprox. 8 mos before i woke up mainly pain free and i split my dose taking 5mg at 3pm to deal with my afternoon pain which really helps.
I wake up very stiff and lack of balance daily and it takes me a good hour plus to start moving. If i over do it which i do i will have both balance and pain problems.
For me also is the insomnia which effects the pain, so if i can get in 4hrs sleep straight this helps my body with pain. Sleep is a great healer or rest.
The main thing was first splitting my dose started at 20mg, 15mg am and 5mg 3pm. When i reduce i reduce the morning dose.
Hope this helps
Mariane
Thank you for your advice. 😀It's interesting you mentioned your balance, I noticed my balance was off for a good six months prior and I started to trip over things more easily. Also I started to drop and fumbled holding things, I kept thinking somehimg wasnt right or normal but I didn't realise it was part of PMR.
I can agree with you on the pain relievers. I have a bad back that gives me chronic pain and so therefore I'm on opiates for it. My PMR popped up just a few months ago and the opiates hardly touched the pain. I hurt so bad even on the opiates. That's why I thought I was glad I was on the opiates because if it was this bad pain then I couldn't believe people who were not on painkillers how they could stand it. But hearing you say that pain pills don't kill the pain of PMR explain that to me.
I was extremely agile and athletic prior to pmr so this balance is for the birds. I also drop things constantly
Some days worse than others, i hate it when i drop food i did it 2x in one day when i had company over😬
I just hang on to the walls amd furniture till i get going.
I have continuous problems with my feet. I get cuts in them which is painful which makes walking hard.
Good luck
Mariane
I drop things all the time. Probably because my hands ache, so I tend to soften my grip on just about everything. Jars of spaghetti sauce make for a beautiful, artistic display on new white rugs.
Do any of you with balance problems also have hearing problems (including tinnitus) or vertigo?
No I don't experience hearing problems, however I always wake up with blocked and popping ears.
Interesting, Layne. With the advent of warmer weather I was wearing much lighter night clothes and as I can't bear the weight of a blanket on my feet (why???) I found that after a few minutes my legs would ache so much I would wake up. Putting on winter pyjama bottoms sorted that. So it might be a circulation thing? ☃🌝🌞
Hi eileenh .yes i have balance problems ,clumsy etc .but have had tinnitus for years and ger vertigo occasionally ,in fact yesterday woke up with it and knocked me back for today too. coukd i ask if any of us have real ptoblems with controlling body temperature-i get very distressed when i thro real hot flushes ,dont know what to do with myself when thet come so fierce and then the next minute im freezing -is it the steroids -or something else going on .i am forever saying to hubby 'is it hot or is it me ' or 'are you cold'.also i msy as well ask also whilst im moaning -i cant walk upstairs without pulling on handrail and the back of my left knee hurts so much that i have to go up one tep at a time.and yes i get vety fatigued which i know is part of steriods and pmr .i am on 5mg which i take 2am with bread and warm drink.fed up but battling on 'as we do ' thanks fir any input and best wishes to all x
Hi eieenh -sorry i am not on 5mg i am on 7mg (brsin fog again)
Hi Layne
You wake up every few hours because prednisone effects our sleep and can cause insomnia which it does to me.
I'm on a heavy duty sleeping pill and it still didn't help but worse without it. The last couple of weeks I've been prescribed the wicked weed and in combination with the pill I'm able to get sleep.
We are lucky in Canada that it's available by prescription legally and delivered to your door.
Mariane
I don't think i hear as well and or a combination that i have problems remembering things. I have always had tinnitus.