If ya can't sleep... write.
Sleepless Nights: If ya can't sleep... write... - PMRGCAuk
Sleepless Nights
42 Replies
•
In my experience the insomnia improves.10 mgs of Amitriptylin one hour before bedtime helped me.
Great Blog!
• in reply toSheffieldJane
Thanks!
I agree. I've slept very well since taking Amitriptylin.
Same here, but gave me weird dreams!!😬
I slept too well last night!!! Didn’t wake til 7am. I’ve been taking my pred between 2am and 4am recently, and this morning OUCH! That burning nastiness in my thighs without pred. Now I’ll have to give it 2 hours before I can get going for the day.
• in reply toSoraya_PMR
YES... I had that... a burning sensation in your thighs!!!!! OMG! YES!
Soraya_PMR• in reply to
Nasty isn’t it? Very prevalent pre-pred for me, much less recently, until this morning, PMR just reminding me it takes no prisoners and hasn’t given up.
No you WEREN'T 'Born Under A Bad Sign' - like the rest of us you were just 'born' with all the potentialities of getting something somewhere down the track - unless you had 'perfect genes' which I am pretty sure don't exist in any human populations. I also felt indignant to discover just a few weeks after the PMR diagnosis (which I had to explain to my doctor) to realise I was developing GCA symptoms as well (which I also had to explain to my doctor).
I must also have been slow off the mark but a couple of weeks after starting the 'higher' Pred dose to deal with the addition of GCA I realised THIS was what my mother must have had when she inexplicably lost eyesight in her late 50s. The headaches they attributed to 'stress' to be treated with Valium and later the partial blindness to a stroke. This was after they initially poked around in her brain for tumours which were never found !! In retrospect I am now almost positive that is what she lived with - UNTREATED - except for a few aspirin for several years - by which time much damage continued to be done ... 'WE' are all much luckier despite a far from ideal understanding of these AI 'disease(s) - at least most of us will be able to prevent the worst case scenarios.
So yes I understand your feelings of disbelief and frustration well - after all I was - or considered myself to be pretty even smugly healthy - apart from the mysterious symptoms which started to add up to something more 'sinister' over time. But since then I have also accepted that apart from or in conjunction with mysterious 'triggers' (aka 'stress') my Northern European - Welsh, Irish, English rellies (ancestors) unwittingly 'gave' me this - rather than bequeathing me the European castle I actually 'deserved'. But luckily we WILL get better (or nearly all of us I believe) so don't despair - all will be 'well' in the end - and in the meantime kick a few cans about the yard and you'll soon feel much much better !!
Cheerio
Rimmy
Tragic about your Mum Rimmy 🙁
When I think back, my Grandma had ‘rheumatics’. I was only young, I wouldn’t have been told anything, but I recall her having difficulty ‘getting going,’ Once up she could walk, she even ran once (I know this as in childish scrawl in an old notebook I wrote “Gramma can run”.) My own mother died too young to have PMR. My Dad’s mother was crippled with RA, so in context, we don’t have it so bad. Thanks for the nudge, that’ll make me appreciate my day more 👍🏼
Thanks Soraya - we sure don't need to look back too far to appreciate how fortunate we are by comparison and to wonder what was really happening with some of family members. Of course none of us wants to be in this 'club' but like almost everything that befalls us we inevitably learn something in the process. I am also very grateful for Pred which for the last year has allowed me to feel nearly always 'pain free' and probably saved my eyesight !! I know there are possible side effects - (although the impact and extent of these is now debatable) but to borrow Mamaici's example and quote some famous song lyrics: 'every form of refuge has its price' - as does life generally.
All good wishes - and I'm so pleased your 'Gramma' got to run !!
Yes bless her. I remember her as a very warm person. I asked my Dad about her today, he can’t recall any medical facts, but reminded me she ended up in a wheelchair, and now he’s said it, I remember this.
How could you not be grateful to a drug that saves your sight? Really it’s not the worst drug in the world. It needs treating like a big unknown dog: gently, with respect and a dollop of caution.
• in reply toRimmy
Words of wisdom Rhimmy, words of wisdom! I'm still in the "feeling sorry for myself"phase... Good on you, keep me in check!
Rimmy• in reply to
Oh mamaici1 (I do sound a bit bossy at times) OF COURSE we are all entitled to 'feel sorry for ourselves' - for a while at least - I for one have done more than my fair share of that - but like anything I just got bored with it in the end !
• in reply toRimmy
Not "bossy," pragmatic. Huge difference! Thank you.
Many thanks mamaic1 and Rimmy for the laugh. As for kicking cans around the yard if you do that at 4am when you can't sleep it'll be even more satisfying I would think in fact kicking them down the street could be even more fun but be sure to be back inside before the police arrive. 😂
• in reply toCT-5012
Hahahahahaha! Indeed.
RX for perfect sleep...take 2 Advil PM and call me in the morning. Adjusting to the new “normal” is not for the faint of heart! Most of us had very active lives, Type A personalities, and none of us enrolled in the old people’s disease club. Lessons that we embrace are self care (put on your oxygen mask first on this long flight), pacing, and loss of control.
Just rant away and forum friends will help you pick up the scattered pieces!
• in reply toSandy1947
Thank you, Sounds like a good plan! I am quite good at ranting, if I do say so myself! : )
Sandy1947• in reply to
Another important lesson is too much complaining outside of this group is not appreciated. Compassion from non-sufferers is short lived!
• in reply toSandy1947
Very good tip!! Yes, a lot of friend comments have been like, "I'm sure you'll feel better soon." " I know you can beat this!" "You are strong, this won't get you!!! " Well, my friends, it is getting me, it's kicking my ass! Hahahaha
Sandy1947• in reply to
You need to learn not to kick back. Ha! Ha! This has been a rough 6 months since embracing change is challenging! Rest period, slow activities like Tai Chi/Quigong, limiting to do lists, 3-5 am wake up are now routine. Best advice is to trick yourself into thinking this is fun!
Sorry Sandy it might be different in the UK, but in Holland stuff like Advil is contraindicated to use together with cortico’s, since the adverse affects ( you call them ad-ons ?) double a.o. the pain or worse in the stomach. I liked your positive contribution, and I like tai chi as well, is it the yang form you practise?☃️
My Dr. in NYC also recommends Motrin for PMR pain. I don’t take that, but the PM works. I need my beauty sleep! So far, no stomach issues. I also take Pred on an empty stomach which I know is not recommended.
I appreciate your advice but I’m the rebellious sort! Happy Holidays!
As far as I know Motrin is ibuprofen and so the same family as Advil, but I will leave that to the experts. Do you think there is Some inner knowledge in relation to what your body can take, I do, but do take care. Have a Good advent and Christmas, Aletta
Thanks Aletta. I’m not familiar with Yang form of anything. All I know is that’s my teacher is 87 and I can actually concentrate for 50 minutes. She calls it moving mediation. It helps my Pred head!
Yes, the body seems to operate on it’s own. I simply follow along.
Stay in touch. Forum friends always make me feel better.
Wow! 87? That’s incredible, Sandy! What an inspiration she must be.
Yes, she teaches 10 classes a week!
UM - advil/ibuprofen (or any other NSAIDs) plus pred is NOT recommended. Both can irritate the stomach on their own, both together increases the risk of bleeding.
One lady with PMR was told by her GP to use ibuprofen (he didn't recognise it as PMR, just aches and pains so no pred) and after 3 doses ended up as an emergency in A&E and being hospitalised for a coffee grounds gastric bleed. I assure you it isn't a pleasant experience for you or the emergency staff.
Thanks for the scary visual. What do you recommend for sleep?
Sorry - but that's the way it can be.
One lady used to use an OTC sleep aid - one of the Nytol's but I can't remember which it was that worked for her. The herbal one in the green pack I think. But everyone is different as we keep pointing out.
Amyltriptiline works for many, just 10mg 1 hour before bed......good luck
I am not sure if it has been a positive experience for others but when very 'wakeful' I have occasionally (at those 'racey' higher Pred doses) used Doxylamine Succinate (aka in OZ as 'Restavit' or 'Sleepwell') an over the counter antihistamine. I have only ever taken a quarter of a 25 mg tab as I was warned it can make some people feel quite groggy the next day. This small amount was effective and did not do that to me - I always felt quite alert after a few minutes awake. But I see it is not recommended for longer term use.
Great blog! You are a very gifted writer! When reading it, I’m sure we all thought, ‘yep, been there’.
• in reply toInsight329
Thank you, that's very kind of you to say.
Ha! Jeffrey Dahmer is better company!!! hahahahahaha. right out loud! Great essay.
No advice on sleeping... want to see you keep on writing!
• in reply toyogabonnie
It would be funny.... if it weren't true! ; )
That Jeffrey Dahmer comment got me, too! Mamaici, you’ve got one warped sense of humor. It’s going to be interesting to see where Pred and sleep deprivation takes it. I have a feeling we’re going to be highly entertained. .
• in reply toInsight329
I hadn't even thought of that!!!! How Pred Head and sleep deprivation impact creativity! This could get freaky.
Super blog. Great expression. Telling how it is. Thanks mamaici1 ATB
• in reply to
Thank you so much!
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