Sleep Supplement

[Bayleaf1]

I have recently been taking a supplement which claims to help sleep which contains something called Ashwagandha. It certainly has helped me but now I’ve read that people suffering from an autoimmune condition shouldn’t take it without first speaking to their GP. I was wondering if anyone had experience of this?

[PMRpro Ambassador]

msdmanuals.com/home/special....

suggests that combining it with pred is not a good idea. Many of these types of supplements can make steroids less effective so you need more.

[Bayleaf1 in reply to PMRpro]

Thank for the information. I have my long awaited appointment with a Rheumatologist tomorrow and will mention it to him.

[PMRpro Ambassador in reply to Bayleaf1]

They rarely know anything about supplements - good or bad!

[Bayleaf1 in reply to PMRpro]

🙁

[Suffererc in reply to PMRpro]

or anything 🤣😂🤣😂

[PMRpro Ambassador in reply to Suffererc]

That's a bit harsh!!!!!!

[Suffererc in reply to PMRpro]

True. They know how to get things wrong 😑

[PMRpro Ambassador in reply to Suffererc]

Won't argue with that ... But some are better than average ...

[piglette]

Ashwagandha is immunostimulating, which means it boosts the immune system. Steroids are prescribed to people with PMR and other autoimmune conditions to help suppress the body's immune system and taking ashwagandha could decrease the effects of the steroids. Ideally you should not take it for more than three months anyway as it can affect your kidneys.

[Bayleaf1 in reply to piglette]

Thank you for that. I will stop taking it now I’m aware of the possible effects. I really thought I had found something to help me as the past five months I’ve only been sleeping for four hours if I’m lucky and have been feeling rather wretched. I’ve tried to do CBT to help as my GP suggested but logging my sleep every night just seemed to make me even more anxious.🙁 I’m really hoping that as I continue to taper maybe my sleep will get better.

[piglette in reply to Bayleaf1]

Before steroids I used to go to sleep in seconds, I now lie awake for hours. I just listen to the BBC World Service!

[Bayleaf1 in reply to piglette]

I know that I probably just need to accept it but sometimes it’s hard not to get anxious when you read in the media how damaging too little sleep can be to your health.

[piglette in reply to Bayleaf1]

I do agree. I often only have three hours in a night, but I do notice that I will drop off in the evening while watching TV. It tends to be in twenty minute bursts though. My temperature is always subnormal, my inflammation levels are always very high and my bone density is over +2, so I have decided that either I am not human or I just don’t fit in with the medical standards!

[Bayleaf1 in reply to piglette]

🙈😂

[tempusfugi in reply to piglette]

Bet you're a fund of knowledge though, piglette!!

[piglette in reply to tempusfugi]

A walking encyclopaedia! Or is that a walking Beano!

[Uke1 in reply to Bayleaf1]

Can I recommend “The Sleep Book” by Dr Guy Meadows? There is also an app. It helped me no end, after 2 years of about 4 hours sleep per night.

[Bayleaf1 in reply to Uke1]

Thanks. I will take a look.

[tangocharlie in reply to Uke1]

I agree, his main theme is don't worry about lack of sleep as worrying only makes things worse. And anything you do to try and improve your sleep, apart from mindfulness, is actually telling yourself you have a problem, and that makes things worse by making you more anxious. These books also say talk to your doctor in case there is a medical reason for your insomnia. Well in our case there is, it's the steroids, but then doctors are unwilling to help us with sleeping tablets because the NHS got sued when people became dependant on them. So the only thing is meditation/CBT type things. I tried Nortiptyline for a while which helped a bit but it had it's own side effects so stopped

[Bayleaf1 in reply to tangocharlie]

Yes, I think you are right there. It is comforting though to know that there are others experiencing the same. Looking forward now to sometime in the future getting back to a normal sleep routine. Thanks.

[Megams in reply to Bayleaf1]

~Have you tried adding magnesium? I rub mag. oil on legs & cream on arms which contains lavender, take oral mag powder in cocoanut water (potassium) half hour before bed along with melatonin prx'd by GP + wear ear plugs.

Listen to Tim Janis for meditations if I wake in night - works like a dream. Being a light sleeper sometimes contributes to anxiety - dog eat dog.

I try not to worry as it defeats purpose - good luck

[Bayleaf1 in reply to Megams]

Thank you.

[AuthorJ in reply to Bayleaf1]

I,too, have had sleep issues like you. Cannot remember where I gleaned these ideas. Here are a few things that I do:

1. During the day I write down all my worries and write anything I can can do to solve them - even if only giving support for others. I put this paper on bedside table. If I wake up and start to worry I put my hand on the paper and say “ I have a plan!”

2. I have a gratitude journal in which I write a bit about things I am grateful for- so that nice memories are in my head, not the fear of a bad night sleep

3. Tell myself that I am going to have the best night sleep ever

4. Take a warm- hot shower or bath before

5.I do not watch tv or use any screen after 7:30 pm. I read a light book- no educational or thought provoking one

5. Infrequently I sip valerian root tea while a am in bed reading

6. Practice deep slow breathing, trying to clear my head when settling in

7. Listen to the podcast (with my phone timer set to “ stop playing when time is up) to Trax to Relax.

even with these I have a bad night. But now more good nights now

[Bayleaf1 in reply to AuthorJ]

Yes, I do a few of these things also but will try some of the other things too. Oh how I long for the nights when I slept through from the time my head hit the pillow until seven in the morning.

[Blossom20]

I took ashwaganda and liquorice from a herbalist for a while. It made me feel great, but sent my blood pressure up, so I stopped it! Have you tried the meditation app Headspace? It's fantastic - and has lots of sleep casts and visualisations. You can try it free for 1 month and then it's about £50 a year - we'll worth it!

Best wishes to you. Just lying resting is also good so don't worry.

[Bayleaf1 in reply to Blossom20]

Thank you. I will take a look at Headspace but have tried similar apps and not found anything that has helped but you never know.

[tangocharlie in reply to Blossom20]

True about just resting, and I can function without one night's sleep if need be, and I usually catch up the next night

[Bayleaf1]

I will take a look thank you.

[HeronNS]

I was a lifelong intermittent insomniac. As early as age three I can remember lying in bed, in those days looking at the moon which was shining in through my bedroom window, Later I used to tell myself stories. When I had my children for some reason I crashed with no trouble every night, but would of course be woken up by a baby or young child like clockwork at 4 am, which I continue to do to this day, although they've all long gone from home and are all middle aged! However for years as an adult I'd have a little nap when I went to bed, then wake up refreshed and unable to go back to sleep. This was, of course, particularly bad when I had undiagnosed PMR and I spent many a sleepless night sitting in a comfortable chair reading or trying to fall asleep over a crossword puzzle. I also tried the usual things to create total boredom so I'd fall asleep which sometimes worked and sometimes not - like naming all 50 United States in alphabetical order or, if desperate, trying to do same in reverse. Then after I started pred and learned not to take calcium at the same time as pred I switched to evening, near bedtime, and discovered that I was now falling asleep easily and staying asleep (until 4 am, but then able to go back to sleep). This continued until relatively recently and now I'm finding it a bit harder to sleep again, but a new sleep encourager has entered my life. I bought a sound machine when we moved because I was very irritated by a hum in the buiilding (which no one else seems to notice, although my very musical son confirmed that he could hear it). I used "pink noise" to drown out the hum. Lately I've found the "crowd" option on the machine helps me fall asleep and stay asleep. I don't know why but think it may be creating a feeling of security which helps me relax.

Among the things we need to help us sleep at night is exposure to daylight early in the day, to set our internal clock.

I'm sorry, this is turning into a bit of an essay. One thing to remember is for much of our history we humans didn't sleep through the night in one nine hour block. It was common to wake up after a few hours and actually get up and be active, perhaps having a little something to eat, socialize, etc. I remember reading in a book by Doris Lessing, when she was visiting a Middle Eastern country, waking up in the night and hearing voices. She looked out her window into a courtyard and discovered that all the women in the community were gathered having an enjoyable time talking with each other without men or children to attend to.

[Bayleaf1 in reply to HeronNS]

That’s interesting. I have actually tried several “noise” apps but found the sounds rather irritating but we are all different. The history of sleep length though is also interesting too. Thank you.

[HeronNS in reply to Bayleaf1]

The benefit of my device is I think there are 64 different sounds, and I've been able to use several at different times to mask out the more irritating sounds of living downtown now rather than on a quiet residential street. Discovered the "crowd" option masked the sound of a neighbour's tv, or outdoor voices, both of which are more irritating than the sound machine, because one automatically is straining to hear what is being said. As the sound machine is just making babble that doesn't happen. And then I found that I was sleeping better, and even remembering dreams, which hasn't happened for years. However last night it must have masked my own clock radio as I slept through the entire hour it plays unless turning off, from 2-3, only waking at 3:30 to take my pred, and then, because I'd now slept so long, unable to get back to sleep! This was a first. Guess I'll have to increase the radio volume.

[Bayleaf1 in reply to HeronNS]

I can certainly understand why you would benefit from the sound machine if you had lived in a quieter area as we live in a very rural area with absolute silence at night and when I occasionally stay with my sister who lives in a much noisier environment beside a busy main road I have trouble sleeping. When you mentioned the “hum” it reminded me of a period years ago when we were hearing a distinct “hum” coming from our walls at certain times day and night. It became so intrusive and my husband was sure that it was something connected to the water supply underground in the lane directly alongside our house which is a single storie converted farm building. The water company investigated and said that our water pressure was exceedingly high which was needed to pump the supply to the houses at the top of a steep hill and occasionally it was boosted which may be the cause of the noise. We were offered a pressure limiter on our supply but warned that if it failed it would be up to us to foot the cost. In the end the “hum” went completely and we declined their offer.

[HeronNS in reply to Bayleaf1]

I hadn't thought about water supply. Assumed it was something to do with electrics, but you may be onto something there. I asked before we moved in what was the loud sound in the stairwell (don't think connected to the hum, but maybe it is?) and was looked at as though I had two heads - completely unnoticed by the superintendent and a couple of other residents I knew before we moved. Maybe they never took the stairs! I was accused of having tinnitus, but as the level of sound changed from place to place in the unit, being particularly loud in one part of the bedroom, and I do know what tinnitus is like, getting it when I take aspirin, I was able to dismiss that suggestion. Which, now that I think about it, reminds me a bit about doctors saying, or implying that we imagine things when in reality they are stumped by our symptoms!

[Bayleaf1 in reply to HeronNS]

Yes, you could have something there.