PMR pain at night

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 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

Interesting,  I did get some of the version of plant that is legal, but not sure if it helps. It has peppermint in it to help mask taste, but I still taste it, yuck. 

I need to go to Colorado for a few days and see if I can sleep! Hee, Hee. 

Im down to 2 mg Pred. My husband had idea, said our body got so used to long term Pred effects that it might take long to get back to "normal", he may have a point there. 

It is weird how warm my body gets at night if they say our temperature drops. Sometimes I'm kicking off covers other times putting them back on, and yes, Anhaga, they both my feet too, so no heavy covers on them. Funny about your winter pj's helping. 

It's felt your body isn't back to "normal" for up to a year after stopping pred - he's quite right.

I sleep with my feet outside the covers too, part of the time all of me is out from under them! I hate going to stay somewhere where I can't get the cover really loose over me - we have individual lightweight duvets at home (dates back to when David had cancer and was permanently cold, heating on in July of the hottest summer in Scotland for years!). My SIL has sheets and blankets on a double bed. One cousin has the heaviest duvet I have ever come across - we only go there in the summer and I'd find it too heavy in winter! But they get all upset if I suggest we'll use our own bedding (which we always have on the back seat of the car when touring the UK anyway as we need them when at the girls - no spare bedding) - it would save them washing the bedding after just one or two nights.

I also wake every two hours of so in the night to use the bathroom. My doctor does not know why  -  I have recently started to take Paracetamol and Codeine at night to deaden any pain that keeps occuting in my left thigh and neck. It seems to stop me waking up so frequently anyway - obviously calms the nerves!

Lots of people say the sweats are in that area and some find they just drip from round their hairline and neck during the day.

There is a single nerve that governs sweating in that area - perhaps it is affected by the bloodflow to it.

I think my legs were cold, although I wasn't really aware that they were.  That's why I think it's something to do with circulation because it also often happens if I sit down during the day and put my feet up.  

I use a vaporizor for the wicked weed and what a difference in controlling the amount. I could write a book of stories about what not to do and freaking out to the point i was thi king of going to the hospital to say gey me un stoned.lol with the vaporizer it is controlled and the taste is minimal.

As for sleeping i always loved a cold room about 17 degrees Celsius. I still have a leg out and now with PMR i always need my house cool. My poor 90 yr old mother who is with me is cold and I'm sweating. What a combo. I keep the house at 20 degrees only bedroom cooler??

This is worse than menopause. Anyway if you ever want to know what strain to buy send me a personal email it's amazing the strains and some are for pain and they do help and some for sleep and others for enhancing cognitive ability which i need with brain fog. You could get blitz but with the vaporizer it's no worse than 1-2 drinks just a different type of buzz.

Maybe a trip to Toronto to see me.

Thanks funny Eileen, your cousins not want you to use your own bedding.  I get so frustrated when men, yes, men... Sleep on top of my bedding instead of under sheets, clean sheets! They don't get that it's easier to wash sheets than bed spreads. Silly guys. 

Love down comforters! Cool in summer yet warm in winter. I can't wait for winter to come! Hee, Hee. Ok, maybe fall first. 

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.

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

No I don't experience hearing problems, however I always wake up with blocked and popping ears.

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

I don't think i hear as well and or a combination that i have problems remembering things. I have always had tinnitus.

The temperature control problem is very common in PMR - before pred I was constantly hot and then had sweats as well so that suggests it can be a part of PMR. Many people complain about the sweats with pred - so if it isn't one, it's the other. Or both!

I would really suggest you may not be on quite high enough a dose - I could only get up stairs as you do or on hands and knees before pred but it did improve a lot once I was on pred. You may also have something else going on in that knee that needs investigating - that's not typically PMR and if it were pred it would be more likely to be more than just one joint. 

Now you are getting down below 7mg your body is having to supply cortisol to top up the amount you take to what the body needs. One sign that the adrenals are struggling is excessive fatigue - even getting WORSE rather than better as the dose reduces. If that is the case you should slow down your reduction to let your body catch up. And ideally your GP would send you for a synacthen or ACTH stimulation test to assess the state of your adrenal glands.

Thank you ieleenh it helps to realise the reason for all these side  effects -stops me from running away with thoughts of 'what the hell is wrong  now' syndrome .