PMRGCAuk
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Bad nights and that book!

Hi!

Just a question and a quick comment.

Question ... I have noticed that I often have really bad nights, waking with pain in very early hours and a lot of feverish sweating. Then I finally wake for the last time and have to wait to cool off before I get out of bed I am so feverish, muscles all burning with pain. The strange thing is that once I have taken my meds,rested a little and am up and moving the day is much freer from pain than usual! It is almost worth having a bad night for such a good day. Does anyone else experience this or know what is going on?

Reading recent posts about how little family and friends tend to understand I found that leaving Kate's book around did no good but handing it to them and saying 'please read this so that you can understand and support me' worked wonders. We are so reluctant to actually ask for help or understanding but that taught me a lesson and I have reaped a rich reward.

I am now a four and a half year person, now in the middle of a house move so am really glad that my family understand.

Hope you all have a good day!

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It has been noticed/mentioned in the past that a bad night where you wriggle about can mean less discomfort next day, especially when you get out of bed after 4am for the toilet - and it was suggested that you are interfering with the stiffness caused by the cytokines which are shed about 4am-ish. I remember quite clearly waking at 3.30 am and deciding I might as well go to the loo straight away or I'd never get back to sleep and being pain-free and mobile but when I got up at 8am I could barely move. It's the same as the myogelosis that is one of the typical signs of PMR - stiffening after sitting for a time. In my case that was with PMR and no pred - as the day progressed I was less and less stiff and aqua aerobics classes early in the morning definitely made the rest of the day better. PMR without bursitis is actually fairly manageable without pred - having bursitis with pred is far worse. That's why I keep saying to try to get any bursitis dealt with with local cortisone injections if you can.

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Usually those really bad feverish nights occur around the time of diagnosis. I can only assume that as you are feeling so well during the day, perhaps the effects of the present dose of steroids you are taking (probably early in the day as generally recommended?) are not lasting long enough to be of benefit through the night. I'm wondering whether slightly splitting your steroid dose might help, say two-thirds in the morning and the remainder in the evening? We've come across a few people who have found benefits from this.

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Hi I've had pmr for 4 years now doctor said inflammation has gone weening of preds but my neck muscles are stiff and pain goes up my head ,when will this go away has anyone got those symptoms,fed up had a bad night lol

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And exactly WHAT makes him think the inflammation has gone? The only way you can tell is being able to get totally off pred without a return of symptoms. Until then, the best you can tell is that the current dose of pred is enough to manage the inflammation created daily by the autoimmune part of the disorder. That's why you have to keep trying to reduce in small steps right from the start to find the lowest dose that does that. It may or may not be zero.

However - I suggest you start a new thread - this is a very old one and many current members won't see it to reply.

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Hi i had a esr blood test and he said the imflamation has gone cut down on the preds every six weeks take one less its not working. Thanks for all your info its good

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I know of one other person who suffered a lot at night. She split her dose, and took a small portion of it in the evening and found it helped.

I agree you have to really tell others to read the book, rather than leave it lying around. After my hubby researched on the Internet, he realised why every flight of stairs is like a mountain to me. My daughter loves in London and my heart sinks when we have to travel on the underground. Hope the family take most of the stress of the house move for you. 😃xx

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What is this book and where can i get it from ☺

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Kate Gilbert's book about living with PMR - can't remember the name, a survival guide maybe? You can get it from Amazon, and as an ebook version too.

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Thanks 😀

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Ordered book on line can't wait to read it ,I wish I found this site a few years ago had no one to talk to about my condition , thanks 😜😀

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Taking pred for 4 plus years started on 80, now on 12.5. I got fed up with waking in pools of sweat anytime between 1.30 and 4a.m., so split my dose between 2.a.m. and 10a.m.. Sometimes a bit stiff in the evening but most of the sweats have gone. I recommend experimenting with the times!

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I struggled w/ night &morning pain & now divide a 12.5 mg total dose. After much experimentation I found that 10mg @ waking & 2.5mg before noon was just the ticket.... An evenly divided dose didn't work to fully banish my morning pain, while a late PM dose = pain-free insomnia that night. Now, my body warns me ~12-1pm w/ burning wrists if I'm late w/ the 11:30 am dose of 2.5mg!

So recommend that you experiment w divided doses and see what your body wants. Good luck!

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