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can't sleep

Posted , 9 users are following.

grandmaDylan
grandmaDylan

I started on 20mg prednisolone 3 weeks ago, after a week I started taking 15mg and will go for another blood test next week and see my gp a week after that.we still don't know if it's pmr or not as I've had? fibromyalgia for the last 13 years or so. Since taking the pred I have felt sooo much better, less pain hardly any fatigue and even some energy!!! The only problem is that I am struggling to sleep, I was still wide awake at 2.30 this morning, woke again at 5.45, fell asleep around 7am. Does this sound like anything you have experienced? I have also noticed a significant increase in my appetite which for a couple of months prior to my query diagnosis was lacking I do still have some pain in my shouldersa nd back but not as severe as before starting pred. Do most people get almost complete relief from pain with pred or is it usually just reduced. Thanks in advance for any feedback. Debbie

1 like, 15 replies

15 Replies

  • tavidu
    tavidu grandmaDylan

    Posted

    Hi deborah

    I had to up my preds from 15mg to 20mg and finally 25mg before all the pain went, this was about a year ago. I am now only down to 14mg after a few setbacks but now going quite well. Sleeping has always been a bit of a problem but I have slowly got used to it and my appetite has increased which is the hard part as I am always hungry. These I believe are common side affects of preds so I hope as I reduce these symptons will cease with it although it will be a slow process. Good luck in your quest. Regards Dave (tavidu)

  • EileenH
    EileenH grandmaDylan

    Posted

    All perfectly "normal" when taking pred and things you will need to learn to live with for a while! Sorry! ;-)

    If you have felt a lot better that would  suggest it is PMR. The starting dose of 15-20mg/day should achieve about a 70% improvement overall in your symptoms - some things like the stiffness may be almost gone but other bits like bursitis pain will take longer - everyone is different, for some people it is very fast, just a few hours, others take a few days, others even a few weeks to get a good result. The pain rarely goes 100% but it should be very much easier to live with and will probably improve a bit more as time goes on.

    The sleep problem is a common one - not one I had really but I could sleep for Britain! Just learn to go with the flow - if you are tired during the day, rest. Rest is essential - no catching up with the cleaning you haven't been doing just because you feel better! Everyone does it - everyone suffers later. Sleep when you can - if you can't sleep and it bothers youget up and find something to do until you feel sleepy again.

    PMR often causes loss of appetite, pred often causes hunger. If you lost weight you have a good start on pred! If you can, really try not to give in tot he hunger - it will help with the almost inevitable weight gain that comes with pred. Cutting carbs drastically really does help with that though.

    There'll be others along with their thoughts but this will do for a start!

  • anthony13224
    anthony13224 grandmaDylan

    Posted

    Hi Debbie,

    All the symptoms you refer to are similar to my own and now I too have to worry

    about not putting on too much weight due to the appetite.

    I have been on pred for 4 years after starting with 20 mg and currently after 3 times of trying to come off I seem to be stuck with 3 mg.

    I find that not eating my evening meal later than 7 or 8 pm and only going to bed

    when I am feeling drowsy gives me better night's sleep.

    I hope this works for you too Debby.     Good luck

  • Juno-Irl-Dub
    Juno-Irl-Dub grandmaDylan

    Posted

    Hi Deborah, I also started on 20mg Pred.( nearly 2 years ago) and for several weeks felt quite 'high', lots of nervous energy, jumpy, AND had difficulty sleeping. I also had night sweats and would have to get up and change my T-shirt (saturated) most nights. The sleeping settled down after a short while for me but the night sweats continued for months. I'm now settled on 5mg. for months now and will soon try Eieen's very slow reduction method . . .  It's great to 'air' issues in this forum and find out that what you're going through is normal. This is the best discussion forum I've ever seen - with great compliments to all concerned (you know who you are!!). Kind regards,
  • grandmaDylan
    grandmaDylan

    Posted

    Thanks to you all for your invaluable help. I will keep in touch. Debbie
    • MrsO-UK_Surrey
      MrsO-UK_Surrey grandmaDylan

      Posted

      Debbie, you are taking your steroids as early in the morning as possible, aren't you?  If not, and you are taking them later in the day, that can contribute to keeping you awake at night.  Also, try not to drink any coffee late in the day, or any other caffeinated drinks for that matter, including chocolate.  I found it helped to have a better night's sleep if I had a little walk late in the day/early evening.   Something else I find helpful when trying to get off to sleep is to take a few deep breaths, and as I let each breath out I concentrate on getting all thoughts out of my mind and completely letting go of my body, if you see what I mean!  You will notice an improvement as you reach the lower doses. 
  • grandmaDylan
    grandmaDylan

    Posted

    I have a slightly odd question, my skin at the corner of my mouth has split. This has never happened before, is it anything to do with pred or just a coincidence that it has happened now?
    • MrsO-UK_Surrey
      MrsO-UK_Surrey grandmaDylan

      Posted

      Hi again Debbie - the crack in your skin in the corner of your mouth could be due to the Pred lowering your immunity, hence letting in some infection, perhaps the herpes virus or thrush.  Vaseline will help to soothe it - it's clearing a little nose sore for me at the moment!

       

    • ingo
      ingo grandmaDylan

      Posted

      Deborah,  sounds like it could be a fungal infection.  Check with your dentist.  Good luck!

       

  • Mrs.Mac-Canada
    Mrs.Mac-Canada grandmaDylan

    Posted

    Hi Debbie, 

    I also have trouble sleeping which seems a little odd considering we all feel the fatigue as well.  I do as Eileen suggested and get up, usually between 3:30 and 4:00, read or email or?? and go back to bed for a couple of hours at 5:30 or so.  Thank goodness I don't have to go to work.  I also have a siesta sometimes after lunch if I'm tired.  

    My Dr. Was concerned about me not getting the right kind of sleep and prescribed some sleeping pills.  If I'm up a couple of nights in a row I'll take one and crash.  Don't really like to take them but I tried all the natural options and they didn't work.

    The weight thing has not been good for me and, although I don't restrict carbs as Eileen does, I am conscious of what I eat and feel I eat healthy.

    Off topic here but I read about Bowen Therapy and it is said to have helped people with fybro.  Have you heard anything about it?  I can't find anyone practicing in Merida but am definitely going to look for someone when I get home. 

    i know you will learn so much on this forum. It is AMAZING!! Mostly the support of fello PMRers👏👏.

    Hugs, Diana🌸

     

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I have to say I'm surprised a doctor thought sleeping pills give you good sleep since there IS some evidence they don't! However - more to the point is that you often become dependent on them and have problems managing without them. Doctors in the UK are usually quite reticent about handing them out.

      There are many articles about "sleep hygiene" - and, above all, there should be no blue light which means no TV, smartphone, computer and so on just before bed! Any lights should be red I think - special nightlights so you don't reset your body clock.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      Hi Eileen,

      I actually take very few of the sleeping pills and I'm very careful not to take them more than two nights in a row.  Now that I'm not working a siesta will usuallyget me through.  My last prescription was from late 2013 so no abuse happening here😉.

      I think my sleeping pattern is fairly common from many the women I have talked to and I believe mine started in peri menopause.  

      Haven't of the red light but do sleep better with black out curtains or wooden shutters that we have here.

      Hugs, Diana🌸

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I LOVE my black-out blinds! It was awful when me moved back to the UK (no blinds) especially since we were in Scotland - light til midnight in summer and again from 3am! And kids...
  • margaret22251
    margaret22251 grandmaDylan

    Posted

    Hi Deborah, welcome,  i had problems sleeping would wake at 4, then 5, then eventually would get up i know all the great ladies on this site will help you.

    I started a little experiment of my own, i have not a lot of appetiate and lost a stone, as i was not eating a lot, as my last meal was 7pm  maybe hungry, so i looked up on the internet foods to help you sleep. I noe eat a banana and low fat pro-biotic yougurt at 9.30.

    Fourth day in and i slept till 7 this morning, now i am not saying this is the reason as it can be a fluke, but it seems to work for me,

    Hope this helps and take care. Maragret

  • paula63201
    paula63201 grandmaDylan

    Posted

    Hi Debbie,

    20 mgs at the beginning of my journey got rid of pain and stiffness entirely after a few days. Now down to 6 mgs 1 yr 4 months later and still no pain. (Fingers crossed it continues). I had a 'frozen' shoulder, but got rid of it through PT. Am back to my usual yoga and other exercises.

    At 20 mgs, I split the dose between morning and evening. I felt really 'charged up' at 20 mg, but got used to it. I also took and still take 300 mg Gabapentin (Neurontin) at night. I think the Gabapentin helps with sleep. I take all the Prednisone in the morning, since being on 12.5 mg and think taking it all in the morning is the better option for a good night's sleep. 

    Caffeine before noon only for me and I try to walk every day, do yoga, and avoid getting upset over things.

    I lost weight during the time I was undiagnosed with PMR and in awful pain, but since being on Prednisone it is all back. I don't feel hungrier than normal, but limit carbs and really try to avoid sugar and salt, so as to prevent some of the Prednisone side effects (weight gain, high blood pressure and blood sugar issues). Avoiding sweets is not a big problem for me, but I love salty things. (Sigh) 

    Good luck! 

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