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Sleep problems and sweating

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molly1957
molly1957

hi I'm new to this pmr having just started steroids almost 3 weeks ago, I see rheumatoigist next week to discuss how treatment is working I guess, anyway within a few days the pain and stiffness have gone with the exception sometimes in the mornings my upper back still feels rather tender but I do have restricted movement in shoulders due to frozen shoulders from 7 years ago so that could be the cause of that . I am pleased that the pain and stiffness have gone but I work in a shop and I am on my feet all day by the end I am aching and so tired I could sleep for a week the problem is when it's time to go to bed I struggle to get to sleep and toss and turn all night , I was so looking forward to a good nights sleep once treatment worked , I also find I sweat a lot this is different to the hot flushes I sometimes I get does anybody else experience this and have any remedies I could try to sleep please 

0 likes, 38 replies

38 Replies

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  • gillian_25383
    gillian_25383 molly1957

    Posted

    Hi Molly,I still get night sweats fromPMR and I went through menopause 10yrs ago.With regard to sleep problems rheumatologist gave me amitryptiline 10mg (25mg made me feel like a zombie)I get slightly more sleep but the quality is much better.
    • molly1957
      molly1957 gillian_25383

      Posted

      Thanks Gillian I wasn't sure if it was just me or not suffering from these things as I haven't been on steroids that long , the sleep problem is just bad when it's happening if you know what I mean once I am up and about I don't feel too bad I just get rather tired late afternoon then wide awake again .
  • andrea93419
    andrea93419 molly1957

    Posted

    Hi Molly, I started on 20mg of Pred in March this year, and yes in the beginning I was 'walking the boards' most nights 2.00 - 3.00 am!!!! As the dose reduced I don't seem to have as many sleepless nights, only if I get 'over tired' if you get what I mean?? I go past sleep sometimes then the auto immune  part kicks in!!! Hope youll start to settle soon.

    best wishes Andrea xx

    • molly1957
      molly1957 andrea93419

      Posted

      Hi Andrea that seems to be me at the minute wide awake when I go to bed where as I had been tired by 10pm !!! And I seem to toss and turn all night , ive never slept properly for sometime now if it's not one thing or another so I thought once steroids kicked in I would sleep like a baby but no such luck the funny thing is though once I am up I don't feel too tired , I do start to flag late afternoon then by bedtime wide awake again but no pain so that's a relief 

      best wishes to you x

    • Oregonjohn-UK
      Oregonjohn-UK andrea93419

      Posted

      I used to drop off watching TV and then when I woke up - in time for bed - I couldn't drop off!!  Even tried going to bed early but that didn't work either!
  • constance.de
    constance.de molly1957

    Posted

    Hallo Molly.  Welcome to the 'club'!!  Your symptoms are absolutely PMR.  I'm afraid the "feeling good" after just a couple of weeks can be a bit deceptive.  Do take it easy!  There is always someone on this site to help/advise.  Ask any questions you like, someone will have experienced exactly those things which you may feel are "unusual".

    All the best, and as I said "welcome."

    Regards fr Constance. 💐

    • molly1957
      molly1957 constance.de

      Posted

      Hi Constance thanks for the welcome , It is so nice to speak with people who understand what you are going through especially as a lot of symptoms are so similar to other conditions and you are never sure if it's that or something else .
  • EileenH
    EileenH molly1957

    Posted

    Almost everyone has the sweats and flushes, especially at first. It does omprove as the dose reduces and your body gets more used to the pred.

    Use just a sheet at night with something thicker folded at the bottom of the bed. It's easy for me as we've used separate single duvets for 20-odd years sinch my husband had the opposite temperature control problems due to chemotherapy during a roasting summer when he needed the central heating on! I thought I was in hell and stoking the boilers! But I find that helps - as does having a fan on in the room, not pointed at you as that could cause chills but the moving air helps. I also sleep with the door to the balcony wide open and the roller blind down - it keeps the room cooler.

    Is there any chance of your employer adapting your work pattern a bit so you don't get quite so tired? We do admire anyone who has to continue working with PMR. But otherwise we tell people to rest when they feel the need - maybe a rest late afternoon might make going to bed easier - it sounds counter-intuitive I know but being over-tired never helps the sleep process. If you have to work there is not a lot to be done - but resting and pacing are essential - if you must work, then abandon other things like the housework and other unnecessary chores.

    And by the way - I'd bet those frozen shoulders were the first signs of PMR! 

    • molly1957
      molly1957 EileenH

      Posted

      Hi Eileen I am being redeployed soon as my shop is closing this news came through the day I saw my GP with these symptoms not a good day, I am hoping once I start new store this will be taking into consideration , I do find that most of the medical profession seem to think that as soon as you start steroids everything will be ok and your " cured " so to speak . 
    • pauline36422
      pauline36422 EileenH

      Posted

      lol  eileen, we got single beds  after my hubby had knee replacement

      and had  big probs.  so now i have  duvet on,  and he only has a sheet

       but as finiky as i am  i dont like to see my bed   with  duvet and  his  is  flat with just  a   sheet and the duvet  cover only,    arnt  we  funny folk   letting that bother  us

    • Anhaga
      Anhaga pauline36422

      Posted

      The little things are what we focus on to help us deal with the big things.  Had you thought of trying to "dress" each bed a lttle differently so that it looks more intentional?  I bet there is something out there in Internetland that will give you some cool, inexpensive inspiration.
    • EileenH
      EileenH pauline36422

      Posted

      I have to say I must be the odd one out - all the rest of the family have these pretty pretty bedrooms and mine is totally functional! The duvets are very thin anyway - 4.5 tog even in the depths of winter - and I always fold them back to allow the bed to "air" (at least I don't put them out over the edge of the balcony like many Germans do!). So it doesn't look too strange with one filled cover and one not. 

      I never see the point of these prettily dressed beds - you just have to move it all to go to bed and find somewhere to put the cushions and things. No-one else goes in my bedroom but us. When we are away and visiting people for a night or two we take our bedding with us - it never seems fair to ask people to wash a sheet etc just for one night. Some of them insist we use theirsof course - and sometimes I wish I could smuggle my very thin duvet in with me when I find a bed with a double winterweight duvet on in the middle of summer in the south of England. One cousin had TWO thick duvets - or maybe one was a comforter (or whatever they are called. She hadn't realised but I absolutely melted until I transfered the upper layer to the other spare bedroom overnight!

    • pauline36422
      pauline36422 EileenH

      Posted

      dead  right eileen   when duvets  came in i thought good  , no more making beds,   sheetsheets blankets   eiderdown,    now what do we  do  cover it with pillows  and  cushings   dolls,    not me iether   just     sheet duvet and pillows.
  • Silver49
    Silver49 molly1957

    Posted

    Hello Molly1957. I think you are doing well to work especially as you are on your feet all day. I started steroids towards the end of May. The sweating has all but gone now but it depends on what I am doing. The sleeplessness has settled but I have had 2 nights this week when I decided to get up and make a cup of camomile tea. I try to put on the lowest of lighting. The first night I did eventually get back to sleep but on the second I gave up. I am retired so it doesn't impact too much on my day. I think that for some reason if I have a busy day ahead I don't sleep so well! The reduction in my steroids has also helped the sleep. What dose are you on at present? Someone with more knowledge than me will be along to advise. I wish you luck on your journey. There are lots of people here to give you support and sympathy. It does get better.

     

    • molly1957
      molly1957 Silver49

      Posted

      Hi silver49 I am on 15mg a day at present I see the rheumatologist on the 1st September , it's so nice to chat to other people who understand what you are going through if you search on health sites it doesn't seem to give you much info and gives you the impression that all this is is pain and stiffness which will eventually go away .
    • gillian_25383
      gillian_25383 molly1957

      Posted

      Hi Molly,glad that you found the forum.Rheumatology nurse 4weeks ago suggested it to me.I had to come off steroids because of side effects and had just been started on methotrexate.Hope that you are lucky in your journey.When I was diagnosed age 45 my rheumatologist warned me that it would come and go but I would never be rid of it and true to his word I am in the middle of another flare up 12 years on although this time it is my shoulders and arms giving the most grief.
    • Silver49
      Silver49 molly1957

      Posted

      Yes,Molly. I get the impression that GPs and others think the problem is solved with steroids and life can just go along as normal. I was on 15mgs and it was when I reduced to 12.5 that I noticed an improvement in my sleep and the sweating. As mentioned in an earlier post, I too have found that changing to decaf drinks helped. I did it for a different reason but realised it made a difference. I don't like the tea but enjoy a cafetière of decaf coffee daily. I like the herbal teas but long for a cup of real tea. A friend who is on decaf said they wave an ordinary teabag through their cup of decaf to give it some taste. I must admit I haven't tried it yet. There will be lots of tips from others, so hang on in there.
    • gillian_25383
      gillian_25383 molly1957

      Posted

      Hi again Molly.I don't like coffee but love tea.I also swapped to decaf (Yorkshire and Ringtons both make a good cuppa)and must admit it did make a difference to the severity and frequency of sweats.I also find leaving the bedroom window ajar helps
    • molly1957
      molly1957 gillian_25383

      Posted

      Thanks Gillian I will try decaf see if that helps unfortunately I am unable to leave window ajar as I live near the coast and the noise from the sea gulls is too much .
    • constance.de
      constance.de molly1957

      Posted

      Where actually do you live?  I was born on the coast and it has always been my dream that I could do so again.  Too old now to move again!😠. Never thought of the seagulls though!!!
    • EileenH
      EileenH constance.de

      Posted

      Seagulls - rats with wings! Poor Esca, my paramedic daughter, loathes them as they keep her awake when she's on nights! We even put extra sound-reducing secondary glazing in the bedroom for her. She lives in Whitby - and of course the tourists feed the darn things which just makes them worse!

      Yes - I was part of a video conference a couple of years ago about PMR research and the people on it with PMR made it VERY clear to the medics that no, we DIDN'T feel perfectly OK as soon as we were on pred and that pred did nothing for the fatigue and caused problems of its own - but they are all the ones they don't think about as all they see are osteoporosis and diabetes! They were surprised...

    • molly1957
      molly1957 EileenH

      Posted

      Yes the seagulls are horrendous especially when they are breeding I live near Whitley Bay so it's a big problem and the darn things are protected !!!!

      i feel PMR isn't known by many GPs my own said I had to see a rheumatologist as she wasn't sure if it could be that or chronic fatigue when I looked up my symptoms I immediately identified with the PMR , I also found most of the sights say average age is 70 I am 58 .

    • EileenH
      EileenH molly1957

      Posted

      The average age is just that - and a very large proportion of people in their late 70 and 80s have so there have to be a few well under that age to make the average. To be honest I think that figure is skewed - they don't look for it in under 55s so they don't find it. The last lot of guidelines were changed to "consider in over-50s with the symptoms" but even that isn't right. There are increasing numbers of under 50s - and a lot who are fobbed off with diagnoses of fibromyalgia, depression, immagination (is that a diagnosis?). I was not quite 52 when mine started and I had 5 years of no pred as they couldn't diagnose it. Iwas the one who worked out what it probably was - but the rheumy wouldn't have it, despite a textbook response to pred in 6 hours. Luckily I saw a different GP to usual - she believed it.

      WHY are seagulls protected? They cannot be a threatened species - threatened by people maybe, but not in danger of dying out!

    • gillian_25383
      gillian_25383 molly1957

      Posted

      Hi Molly,people have to be exceptions to the rule.I was diagnosed age45 but had been having problems since 40.I have been in Norfolk 25 years but am originally from Stakeford.It may be erroneous but rheumatic problems seem more common up north:my mam and grandma both had RA and one of my friends up there also has
    • constance.de
      constance.de EileenH

      Posted

      "Imagination" - no, I think the "diagnosis"  is " hypochondria".  Hee hee!😄
    • molly1957
      molly1957 EileenH

      Posted

      Apparently all gulls are protected I can't for the life of me think why they can be so nasty
    • EileenH
      EileenH molly1957

      Posted

      I get kittiwakes - but they aren't the foul things that make life unpleasant in seaside towns! I'm with you Molly!

      Oh Constance - that's harsh wink . I've faced down a doctor or two in my time with that question!! frown

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