Hi I don’t know if it’s related to PMR at all but I’ve always been a great sleeper. But now I’ve developed insomnia, at first it was once or twice a month but it’s getting progressively worse and often I’m finding myself wide awake until about 3.30 - 4am certainly doesn’t help with reduction fatigue.
Will taking remedies such as Kalms be a problem with steroids?
You've been on pred for few months haven't you? Have you changed the time you take it? Are you getting less exercise or less fresh air? Ae you avoiding screentime close to bedtime? I discovered quite by accident when, in order to avoid taking pred and calcium together, I switched my morning dose of calcium to shortly before bedtime (with a little yoghurt or kefir) that I started to get to sleep much more easily. As a lifetime intermittent insomniac the pred effect hadn't really been obvious to me, but the calcium definitely made a difference, and has persisted to this day, nearly six years later. I suspect my habit of lying awake and having a little worry is now cured, but haven't tested!
Hi no I haven’t changed anything other than less exercise as I have chronic plantar fasciitis at the moment. Don’t have tv or phones in the bedroom and usually read for half an hour. Usually I would be out for the count but now I end up coming downstairs as nothing works. I drop off for about half an hour then ‘zing’ wide awake! (I wouldn’t normally be on a screen at this time of night) I didn’t consider the calcium but I’ll try that. Thank you
Well, it's one thing that can't hurt! I do find the yoghurt or kefir or some other small snack is important as otherwise the calcium doesn't sit well in the stomach. I usually have it about half an hour to an hour before I expect to be turning out my light. Hope your feet feel better soon. As if we didn't have enough to deal with, it's frustrating when some other body part makes trouble!
I tried the calcium trick after reading about it on here and for me it’s worked c
I like the rest of PMR replies have been a lifelong insomniac, and find magnesium and classic fm a great sedative … especially the music.. it’s very calming and I often wake up after a good sleep with it still playing! Prednisolone made me really wired, anxious and a total insomniac when I started Pred last year so I completely understand how you feel, and hope it soon settles for you. Melatonin, used for jet lag is good too, but one cannot buy in the U.K. It is available through a reputable firm called Biovea, based in the US.Plantar Fasciitis would restrict your exercising I guess too. About 3 years ago I had that, and a friend suggested Rock Tape which I bought, and used a UTube video on how to tape up the foot. It really worked with some shoes from a company called Vionic.
I hope you feel better soon. Best Wishes Autumn 🍂 Lass x
That is all so helpful thanks so much x
Oh, wow Abbey, I have chronic Achilles Heel Pain too....been going on for about 4 months. I do the exercises recommended on a website for this complaint and use cold packs several times a day. Rest is the best, but we can't sit down all day with our foot up, can we ?? I've also got 3 numb toes, that I've had on same foot (left one) for over a year. Finally got to see a neuro physio, recommended by my rheumy, after waiting since Oct last year, she hadn't got a clue why my toes are numb...they don't bother me as no pain, but my heel is so painful and now swollen too. I think it's the Pred that's probably causing your insomnia, although as we age sleep can be a bit hit and miss. I get three good nights and four bad ones. I'm now taking 7mg of pred, but experiencing right shoulder pain. I'll persevere though as it's not too bad and don't really want to increase the steroids. Do let me know what you are doing for your foot that you find helps. I roll mine over a tennis ball, but nothing seems to help with the pain. Would hate for it to rupture and need surgery. The neuro physio has now put me on the list for regular physio which she told me will help greatly. I even bought some insoles, no good either. I've been told to wear a small heel and walk around in them instead of slippers...it's the slippers having been worn for so long since Covid that I think may have caused my heel pain....too flat !!
I await to hear back from you.
Anne
I wear Isotoner slippers for similar problems as they have an arch in them, and can be bought online to make life easier.
Oh thanks for that I’ll take a look, I have arch support sandals and trainers but slippers would be good
Thank you will buy some....do you have same complaint ?
I had a problem with my hip, and it was decided that my gait needed sorting out, so after seeing a consultant the Hospital made me specially moulded inserts, and advised using slippers with arch support instead of flat ones. This was before I got PMR nearly 4 years ago.
I've just been on-line to look for the Isotoner slippers. Surprised to see that some are really flat ballerina type. Have you bought the clog type ? Seems they come from the US. Would you mind telling me where you purchased yours from and how much they cost.
Thanks Anne
It’s awful isn’t it! Started in January! I wear arch support shoes, do the exception every day and take pain killers but have to work still so you’re right, can’t rest all day. Saw the podiatrist last week for the first time, he checked I was doing the exercises right, and told me to use a foam roller (more painful than it sounds!) on my calf muscle. Every day and instead of a tennis ball a bottle of frozen water. So flipping painful 😖 x
You're right, so blinking painful.....wondering how long it takes to go. Usually comes from a sports injury, not in my case though. All I can think of is I stepped off a kerb that was lower than I thought. I'll try those shoes that have been recommended. Also I notice on the internet there is a boot thingy that can be purchased, may try one of those too. Just hope physio won't be long to contact me.
I know I didn’t have an injury either, I stand a fair bit at work but not excessively. 🤔
Amazon- mine are Popcorn Turnover Open Toe slippers.
Thank you I will try that.
You are younger than most that end up wit PMR/GCA, as you're still working. A friend of mine asked if it's poss that Achilles could be part of PMR......highly unlikely, but did make me wonder when it came on out of the blue.
Anne
I wondered to, I was diagnosed when I was 61 I’m just 64 now and self employed so it’s tough at times - looking forward to getting my pension in 2 years so the pressure will be off - or it’s burnt out by then! 🤞 gone from very fit to 🙇♀️
I'm 10 yrs older than yourself....mine started 2019 age 72. It's hard to differentiate between PMR and GCA as the symptoms are the same, which is concerning. I've just started to watch the three videos on GCA, that PMRpro posted. Started the first one but it cut out when the third doctor started to speak about it. Certainly worth a listen.
Oh yes I will do that thank you X
Just sending empathy, l’m wide awake but it’s due to an additional dose of steroids. The issue with being unable to sleep is that it then becomes a pattern, you worry that you won’t sleep & then oblige.
The hot weather in the U.K. certainly hasn’t been helping, our friend HeronNS has told you about her taking Calcium at night & l know some of the others do that also.
You already have good practice at nighttime but do you sleep in the day? (I do sometimes but it generally doesn’t affect my night sleep)
Breaking the Cycle is key really, l hope you’re not still awake to read this until tomorrow.
Kind Regards
MrsN
I guess being an insomniac child and teenager it really didn't worry me when I couldn't sleep as an adult. I'd usually give myself an hour or two, then get up, go to my livingroom where I had developed a way to make a particular chair very comfortable, and read. Eventually I would fall asleep. I believe I can count on the fingers of one hand the number of times I've done this since I started the calcium thing (in 2015) - with the possible exception of when we were working on the reno of our new condo and everything you could think of went wrong - and I mean everything. But that truly was exceptional. Hope you get to sleep soon.
Hi Abbey17.Like Heron, I too have suffered from intermittent insomnia for the past 25yrs. Since taking pred it's geared up to another level though with nights when I'm literally awake the whole night. A good night for me would be 3 to 4 hrs of intermittent sleep and a really good night...3 to 4hrs of undisturbed sleep!
When I was still working, this would really stress me out and anxiety levels would be particularly high......I would desperately try to get to sleep so I'd be ok for work and this in turn made the condition worse and my general health worse. Since being off sick, I simply don't fret about it anymore and just 'go with it'. In fact if I wake, I often just enjoy lying in my warm, cosy bed and listening to the noises in my night garden......my hedgehog rustling around in the undergrowth or the collared doves that roost in my cotoneaster tree every night, giving an occasional flap of their wings. I also hear the barking of muntjac deer on the meadow and both tawny & barn owls. I also love to lie and listen to the rain as it falls on the garden.
I know I'm fortunate in that for the most part I don't have any real pain to deal with, so enjoying these small pleasures whilst wide awake comes easy. I'm still tired the next day but try not to 'catch up' on missed sleep as the following night I'll nod off very quickly and sleep much better.
I don't take any oral remedies to aid my sleep as I feel I'm on enough medication of one sort or another. However, I have used an electric oil diffuser which also emits white sound quite successfully.
No one thing works for everyone but there's usually something that at least helps for each of us if we can discover it. For you it may be the Kalms but I'm afraid I don't know if they're safe to take with pred. You'd need to check the compatibility with your pharmacy.
Have a read of this - healthunlocked.com/pmrgcauk...
But you do need to check a with doctor or pharmacist.
Thanks for this, I have my GP visit next week so I’ll mention it to him.
I have always been a good sleeper, other than at very high stressful times, illness of others, myself, work issues. 9 hours easy! Mind you I do have an underactive thyroid.Once I started on the pred it was all out of the window. Wide awake club from about 4.30 and never able to go back to sleep. I have found it has improved enormously since my dose has been reduced, but I am still awake early which is not me at all.
I don't allow myself to 'nap' for more than 20 minutes in the day though, otherwise I am heavy and lethargic for the rest of the day and just waiting to go to bed. I try not going to bed until 9.30pm but would just clock watch for that time.
I now take magnesium in the evening along with a prebiotic powder (Michael Moseley seems to think it helps with sleep) with some yoghurt at about 7.00/7.30
I have no idea if it might be the reason I am sleeping a bit better, but I don't want to stop in case it is! I also have warm baths in the evening with magnesium salts, and a magnesium body butter. Chucking everything at it!
Sleep is just so important isn't it, and so frustrating when you don't get it.
Thank you I think I’ll try the magnesium- I have a healthy night time routine but that’s one thing I’ve not tried
Hi I take my 17 mg (just had to up from 13.5mg for 2 weeks) of a morning and regularily wake between 2 - 4 am with aching limbs or a temple headache (the reason for upping the dose again). This morning I was awake from 4 am to 6.45 am, hot and restless despite the cooler temperature. I don't look at my phone/ipad for at least 2 hours before bed and use a blue light filter. Sleeplessness has always been a feature of my PMR/GCA journey. I am on my feet in the garden all day and out dog walking, last week I walked a total 39 miles and still I don't sleep well. I take nytol or sleepeaze every now and then and find that helps me catch up.We all seem to have different experiences, why this website helps keep us all sane and positive. Heronxx
I also have never had trouble sleeping but at the moment if I get 3hours sleep I feel I have done well. I feel it must be the steroids. I have only been on them since the 1st of July.
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