Insomnia

[Shiwaaa]

Does anyone have trouble sleeping, not necessarily pain induced insomnia. I go to bed and fidget all night, then the pain starts. I'm wide awake there's nothing much in my head, I practise good sleep hygiene, yet still my body won't go to sleep, I get about 2 hrs sleep. I haven't been diagnosed yet, still travelling that yellow brick road but everything is pointing at PMR. Any words of wisdom I would greatly appreciate as it's really getting me down, 3 mths now...

[HeronNS]

This currently active thread has a little conversation going on about sleep and insomnia you might find helpful:

healthunlocked.com/pmrgcauk...

[Marijo1951]

I'd be interested to know what pred dosage you are on. I started on 60 mgs and from the start until I got down to about 15 I suffered insomnia every night, going to sleep easily enough but waking up between 2 and 4 a.m. - fully alert and unable to doze off again . I was so grateful to be already retired when I became ill, as if I'd had to commute and work a full day, I would have been in a pitiful state. Whereas, being retired I could rest all I wanted during the day. These days I'm transitioning from 8 mg to 7 mg and occasionally have a bad night, but on the whole that stage seems to have passed.

My way of dealing with insomnia was to go with the flow, be aware that I couldn't fight it and win and to get up and do stuff. I mainly watched silly old films on Talking Pictures or You Tube and I knitted endlessly - not complex demanding stuff but basic plain knitting. I made a number of hats and scarves and an adult-sized blanket for charity. Insomnia was annoying but life without pred would have been so much worse.

[Marijo1951 in reply to Marijo1951]

Sorry, just read your post more carefully and you're not yet diagnosed, so my reply isn't altogether relevant, except maybe as an indication of how insomnia can be a side effect of pred!

[Shiwaaa in reply to Marijo1951]

Thanks for your reply, I'm not on meds as no one seems to want to commit to a diagnosis. I too have just retired, this isn't how I had planned my retirement to be, so I get very frustrated. I think you're absolutely right when you say not to fight it as no I can't win and trying to, makes the whole situation even worse, every night I go to bed and say to myself tonight I'm going to drop off to sleep but it never happens...

Thank you for your reply, I'm going to do some rugging which I've wanted to get into for a long time.......good idea ..

[Hidden in reply to Shiwaaa]

I presume you have told the doc you get pain in the night? And that your sleep is restricted. I don't sleep very well and do get pain in the night but it's from chronic back pain & fibromyalgia. The pain from PMR usually strikes in the morning on waking (if I sleep).

[HeronNS in reply to Shiwaaa]

Does the pain get worse at night? I believe this is possibly the sign of a different illness, one which is mentioned in "differential diagnosis" for PMR. PMRpro will know.

[Shiwaaa in reply to HeronNS]

Yes definitely worse at night and I'm not that stiff in the morning once I'm up and moving. Can't find the link but I'll look again... Thank you

[PMRpro Ambassador in reply to Shiwaaa]

Ankylosing spondylitis is typical for having pain earlier in the night and improving very quickly once the patient is up and moving whilst one of the criteria for PMR is pain/stiffness lasting in excess of 45 mins in the morning.

[Riggs1961 in reply to Shiwaaa]

Good morning, I too am a newbie diagnosed about five weeks now waiting to transferred to rheumy at the hospital, my diagnosis was taking ages but I struck on an idea and got my husband to video me trying to get up in a morning I gave this to the doctors to see it for them selfs once he viewed the video he diagnosed me within five mins perhaps you could also do something like this? Good luck I’m sure if you wanted to you could go back and read my 1st post see if anything could help. Good luck

[JanetT58]

I suffered with insomnia when I started on 15mg I used to get up if I couldn’t sleep and read or watch tv for a couple of hours. Now down to 5mg and sleeping a lot better only the odd night that I can’t sleep so it does improve as you lower the dose

[PMRpro Ambassador]

I found poor sleep was part of PMR - not just because of pain and stiffness, and after starting on pred at PMR doses it did improve. Now I'm on 15mg and sleep like a log most nights. Atrial fibrillation episodes keep me awake - until they resolve and all of a sudden I'm asleep. But I'm knackered next morning!

[Hidden in reply to PMRpro]

Hi Pmr , I was having episodes of atrial fib and was put on metoprolol it has been one of the few meds I have found to work great. When I was onhigher doses of prednisone I was on higher doses of metoprolol...

[PMRpro Ambassador in reply to Hidden]

I'm waiting for a follow-up appt for the pacemaker - they could up the medication now, before it would just have increased the risk of the asystoles and was difficult to get a balance. But actually - magnesium seems to do a great job too. I was on for the first couple of weeks but wasn't told to continue it. Strangely, it costs more than the drugs!

[Yellowbluebell in reply to PMRpro]

I bought magnesium powder to make into a liquid for spraying and was shocked at how much it costs

[PMRpro Ambassador in reply to Yellowbluebell]

We do get effervescent tablets here in every supermarket - OH uses them - that are very reasonably priced and make a pleasant enough drink. The little fancy bottled ones from the doc did a good imitation of a post-prandial digestif!!

[Riggs1961 in reply to PMRpro]

Atrial Fibrillation? What’s this please tell me it’s you closing your eyes to sleep and suddenly your heart starts beating like a drum? I ask because I’m having the

At most nights I thought maybe pred related as only just started I have it on my list of questions for the doc tomorrow

[PMRpro Ambassador in reply to Riggs1961]

Yes, you probably would feel it that way. It is a form of arrythmia, the upper part of your heart beats too fast and irregularly. But there are other forms of tachycardia (fast heart rate) and arrythmia (irregular beating) so an ECG is needed while it is happening to know what it is,

[gaqke10]

I am an expert at not sleeping. I didn't sleep well for about 25 years, ages 40-65. Well before PMR and prednisone. I finally took Trazedone 50 mg at bedtime (still do) and would sleep at least 4 hours. I went to a wholistic doctor and discovered I had two problems. One was that I didn't have enough stomach acid to absorb my minerals and proteins. (I had been losing weight.) I started taking stomach acid with each meal. The second was that my cortisol was too low. (Saliva test.) In the morning it never got as high as it should and in the evening it never got as low as it should. My body was kept awake by producing norepinephrine to keep my adrenals going at night. So even before I ever took prednisone, I was low in cortisol. When I started taking cortisol replacement (hydrocortisone) I started sleeping through the night, or at least six hours. If I wake

after six hours, usually to pee, I take calcium (125 mg), magnesium (120 mg)

and some phosphatidylserine (200 mg) which helps to protect the hippocampus from

being overstimulated. This is the best combination I have found for waking up early after 25 years of insomnia. When I was diagnosed with PMR I was afraid that prednisone would keep me awake, but it didn't. I'm still sleeping OK. I suggest asking your doctor about

Trazedone to start with.

[Ciar]

In the 6 months before my PMR became unmistakably PMR ( I had pelvic girdle pain for about a year before shoulder and neck) I had a horrible bout of insomnia. 2 hrs sleep per night for months. After I became so stiff and sore that my problem was obviously PMR, the insomnia lifted a little. I’m still having a rough time sleeping, but not nearly as bad as those months. For me, PMR maybe was caused by that long insomnia, or maybe PMR and insomnia were part of the same problem.

[Hidden]

I hope you’re able to get a diagnosis and start effective treatment soon. If it is PMR, it could be a long road, so the sooner the journey starts, the better. It’s a very frustrating condition, poorly understood, but this is the forum for advice and help whenever you need it. People will be honest and help is based on knowledge of the disease and experience. Good luck.

That aside, I read the article below in the Sunday Times yesterday. I have sleep problems and I’ve tried all sorts of tricks and techniques, with little success. I hadn’t heard of the kiwi and cherries mentioned in the article, so I’ll give those a try. Here it is :

‘Do bananas, spinach and dark chocolate really help you to sleep?
Insomnia is a common symptom of magnesium deficiency and, as highlighted in Style’s recent investigation into women and sleep, is two times more likely to affect women than men. The mineral has many health benefits, including promoting heart and bone health, and, experts suggest, helping the brain and body to relax and aiding good sleep.

If you are deficient, eating magnesium-rich food could help you get the shut-eye you need. Bananas, spinach, almonds and dark chocolate are all good sources. If you already have sufficient magnesium, however, these foods are unlikely to have much impact.

What about cherries and kiwi fruit?
Studies have shown that eating two kiwi fruits an hour before bed can improve both sleep time and quality for adults with sleeping disorders. Similarly, a study conducted over two weeks showed that tart cherry juice increased sleep duration for adults with insomnia — possibly because of the high concentration of the sleep-promoting hormone melatonin in cherries.

However, while the studies provide an interesting starting point, the sample sizes for both were too small — 24 people for the kiwi fruit study and just 15 in the cherry study — and the difference made in the cherry study was so slight that its results were far from conclusive.’

[Shiwaaa in reply to Hidden]

Thank you Phoenix for that, already on magnesium supplimemt but will definitely try the Kiwi....I have appointment with physio end of this month so hopefully I will move forward from that....

[Yellowbluebell in reply to Hidden]

My doctor recommended kiwi fruit to help.sleep but unfortunately it didnt work for me except for more visits to the toilet!!

[PMRpro Ambassador in reply to Yellowbluebell]

For which I hope you were awake ...

[Yellowbluebell in reply to PMRpro]

Hmm could have been very messy!!

[Hidden in reply to Yellowbluebell]

That’s interesting, thanks. I guess body response to excess fructose, so it’s wee’d away overnight. Im already wee’ing every 2 hours every night...for months. Blood pressure med started that. Never had any BP probs until last year when PMR diagnosed. Fatigue, stiffness, pain> lower activity >increase BP. I had constant hunger too, but lost 5lbs so it’s not diet.

A very recent hba1c is fine, so I’m not worried about the sugar risk, but maybe I need to think about how to reduce the 2hrly problem before trying kiwi. When I asked GP she appeared to find it amusing and found it helpful to know that my kidneys are working.

That’s part of the PMR conundrum; one bad thing leads to another, then it’s medicated, then there’s med to counteract med...trying to get back to basics is tricky. I’ll post how I get on. This morning, I bought 16 cracking Kiwi grown in Chile, so they’re autumn fruits at ripening point and they were only 8p each. Yummy.

[PMRpro Ambassador in reply to Hidden]

I'd be requesting a review of my BP meds. She may find it amusing - she'd laugh the other side of her face if I were the patient. That is not acceptable behaviour ...

[Hidden in reply to PMRpro]

I quite agree PMR. If I had a choice I’d be away. I think sometimes there’s a tinge of nervousness in her laughter...wondering what her next challenge will be. I did ask about other BP meds. It was ok at 5mg; weeing kicked in when it was upped to 10mg. I was reluctant to increase, but agreed a ‘short’ term at 10 on the basis that once PMR better regulated, I’d feel better, increase activity, reduce to 5mg then zero. But, it’s not working as planned. No surprise there!

I’ve had to abandon efforts to improve fatigue as pain is borderline unmanageable, 24/7 so just started steroids again at 25mg after tapering off totally. Hey ho.

[Yellowbluebell in reply to Hidden]

I loved them but like you I spend a lot of time in the bathroom peeing but it wasnt just the wee bit that was the problem!!

[PMRpro Ambassador in reply to Yellowbluebell]

That isn't how diuretics are to be used. A balance has to be achieved - and it is pointless if a patient spends all night awake or unable to go out. And BP can be managed in various ways.

[Yellowbluebell in reply to PMRpro]

I was told to have kiwis for sleep nothing wrong with BP just insomnia but I was always in the bathroom already never mind with kiwis in me!!

[Noosat]

Bot being able to sleep with painful thigh muscles is what convinced me to go to doctor, who diagnosed me with PMR

[Suet3942]

I now take a magnesium supplement. Find it really helps to relax me.