With all the information coming out about the importance of adequate sleep to good health I have begun to wonder how many of us PMR/GCA folks or not the best sleepovers throughout our lives? My mother says that I was “born a night owl” and that continued throughout most of my life. I did not have insomnia until Prednisone induced it, but I often “burned the candle at both ends” so to speak, throughout my life. Besides a very unhealthy (abusive) 30-year marriage (now divorced, thank God!) raising 6 kids, and many other stressors throughout my 65 years, lack of adequate hours of sleep was an added stress.
How many of you did not typically get around eight hours sleep throughout your lives?
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Lenore58
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I have never had eight hours sleep. I am a night owl too. When I was a kid my mother used to complain about me not getting enough sleep. I never had insomnia though until I started on steroids for PMR. Before steroids I used to be able to go to sleep in seconds when I was tired.
I was insomniac before I was first diagnosed with Pred, due to work stress. It was 2 years before I sought help. Oddly, when I am in Australia visiting family and the clocks are the opposite to UK night, I sleep well until sunrise which it worth being conscious for.
Always a morning lark, so no matter how late I went to bed or how little sleep I got, I would be awake at 6. That disappeared after adrenal insufficiency. Night shifts were a terror because I could only cat nap in the day. I’ve always been such that if I am not asleep by 11pm I will be awake until about 1-3am. Getting to sleep has been a lifelong issue but it goes in cycles.
note my diagnosis is Adult Onset Stills Disease which for me manifests as rheumatoid disease with many symptoms similar to PMR and Lupus. I was diagnosed aged 17 but from my early years, in fact as early as I can recall, I’ve struggled with sleep. Getting to sleep, staying asleep and decent sleep. When my second baby was slightly premature and then unwell I managed with 4 hours a night broken by feeding him for a year. Later when I had a stressful job I struggled to sleep more than 4-5 hours a night. Now I’ve retired early I sometimes manage 6 hours but never continuously. I think my rhythm is out of kilter and not helped by bad days when I have to nap due to feeling so ill but even a nap is never more than 25 minutes for me. It used to stress me out worrying about it getting enough sleep. Now I’m retired I just accept being awake in the night knowing I can rest during the day. My husband sleeps 8 or 9 hours soundly each night so these days we have separate rooms so I can read in the night . We do commute for cuddles though 😃
I used to sleep really well until we moved house about 17 years ago. Since then I never sleep through a full night and use audio books to induce sleep or return me to sleep when I wake, which is often during the night.
Been happily knitting (for charity) since before 3 o'clock this morning. I have come to accept that I am going to get broken sleep and not much of it on preds. Catch-up snoozes during the day, especially after lunch, can last for 20 to 60 minutes. Not ideal, but that's just the way it is atm. A friend of mine going through late menopause constantly worries about not sleeping which I am sure is making the situation worse.
I’m the same sleep wise. Definitely a night owl. Even as a child I used to sneak a torch into bed and read a book under the covers. Then as a teenager I was always in big trouble for staying out late - this has continued my whole life - often going to bed at 1 or 2am - and then reading or playing sudoku to try to get sleepy. However, coincidentally, having just got home from a month in Asia I’ve got jet lag and getting to bed at 11pm the last 4 or 5 nights, waking up at 6.30 ish so that’s 7 1/2 hours less the 10-15 mins to get back to sleep after my 3.30am toilet trips 😂. Still 7 & 1/4 hours though. Pretty good for me - I’m hoping this might be the ‘new me’ 🤞 I guess time will tell 😂
how interesting. Definitely always burnt candle at both ends...always had broken sleep...and an abusive marriage that I walked away from after 33 years, taking kids with me. I always assumed it would make me very ill, if not finish me off.....but I am still tottering along.
We have much in common! Glad you got out too! An American woman wrote a book a few years ago, called the Life-Saving Divorce. Her point is that continuous stress of that caliber can indeed, actually kill you eventually through the onset of disease.
Can't remember when last had a full nights sleep. Wake constantly through the night and not sure how long it takes to get back to sleep, sometimes feels like hours. I try not to look at clocks etc as read somewhere that is not helpful, wish I knew what was. X
I’ll share some thing that helps me get back to sleep, or to fall asleep if I’m having trouble initially. Do a search for “yoga nidra sleep” on YouTube. You can also type in “Allie Boothroyd”and “Progressive Hypnosis” which are my two favorite voices. (Obviously you don’t watch it; you just listen to it.) And you don’t try to catch everything. Just let yourself fall asleep along the way. Very relaxing and also restorative sleep/rest.
I just remembered that Ally Boothroyd has a whole playlist called “yoga nidra for insomnia” or something like that. If you click on that it plays the entire playlist and I don’t know how to stop that. But if you find a title in the playlist and then go back to YouTube and search that title, it will play just that title for you, unless your settings are different than mine! xx
I cant even remember the last time i slept through the night ! Pred made it much worse when i first started taking them. Im down to 7mgs now and it has eased of at how long it takes me to get to sleep, but i wake up thinking ive been a sleep hours but in reality it may have only been a couple. Best tip i had was dont look at the time you become much more aware of it ! ive started to do it again ! So im going to take my watch off ! Bet you have lots of replies to this post. Best wishes Viv .
I don’t aim for 8 hours, more like 7, but since pred I rarely get it. My problem is that if I wake up in the night, I wake up completely in an instant: wide awake, alert, mind buzzing, and - definitely - with my bladder woken up and needing to visit the toilet. I’m sure it’s the pred, and sometimes I just can’t get to sleep again. I have had some small success by getting up and using the toilet, as quickly as possible and turning on as few lights as I can to try not to stimulate my brain any further, and hurrying back to bed. Sometimes then I do get back to sleep. I did that last night, and ended up getting the right number of hours altogether. Maybe try that. I avoid things like giving in to reading, or anything else which wakes me up further. Trying really hard to keep myself on a good cycle.
Prednisone affects me that way exactly. But my post is asking if people with PMR/GCA have a long history (not from recent Prednisone) of scant sleep. There are studies showing that long term sleep issues are connected with illness. I am wondering how many of us have that in common as a partial trigger.
OK. Although I don't think I suffered from it before, I moved in with a new partner some years before developing PMR, and put up with disturbed sleep for many years as a result of his disturbed sleep: so I suppose you could say I had acquired poor sleep. I don't know whether that is relevant to your question or not. We now occupy separate rooms so I don't have the same problem, but you could say the solution came too late!
I used to bea good sleeper. 10pm to 7am no problem every night.This all stopped when I started getting PMR symptoms some years ago. I started to get very fatigued during the day and would drop off at any time. I would then be unable to sleep still night. Constantly waking and getting very little proper rest.
When I started on 30mg of Prednisolone in 2016 I became a total insomniac. Couldn't sleep at night, just cat naps. The GP gave me 50mg Amitriptyline to take at night but all this did was give me hangover the following day!
Gradually as the dose of pred came down I was able to establish a sleep pattern that works for me. I find I sleep best from about 2am. So I've become a bit of a night owl.
I have my routine and get plenty of rest but it's just not the classic 8 hours any more. I get about 7 hours in a 24 he period and occasionally will need a 12 hour sleep! I listen to my body and if I need a nap then I take it.
I guess we all adapt to what our bodies need. I have a friend who is a lifelong insomniac and he always says that "he sleeps if he needs to". He doesn't worry about not sleeping traditionally and just organises his life very well. It's useful having a insomniac buddy as there's always someone to chat too online if I cannot sleep. I find that not worrying about sleep times lengths helps a lot as the more you fret about it the less likely you are to sleep!
As a child I had anxiety and would wake the house trying to sleep with my parents or sister. I always felt like I couldn't breathe. This as a result of sexual abuse around 6ish. Carried on throughout my life and into a couple of abusive relationships and marriages. Sleeping with one eye open was not conducive to a good night's sleep. I now, at 73, get a straight 8 hours nightly. I take my Pred at bedtime around 10, with food. Resolved many of the side effect issues. Sometimes if I'm awakened rarely, it's difficult to get back to sleep, but I do. Regardless, my body wakes me between 6 and 6:30 daily. Years of working has gotten me into this rhythm.
I also had an abusive childhood. all of the crazy adults in my life caused a breakdown at age 7. My sleep has always been broken. Diagnosed with severe sleep apnea in January of this year. stop breathing 54 times per hour. Trying to adapt to CPap since January. Super high waking blood pressure, i.e. 185/118. Doctor just increased meds. No one in the medical world will listen that part of high blood pressure upon waking is from panic attacks in my sleep. CPap not working well for me. I see a specialist the end of December to inquire about the Inspire implant. So, no, there has never been a time in my life when I had a good nights sleep and awakened feeling refreshed.
I'm so sorry you're still going through the repercussions of a terrible childhood. Many people, especially medical professionals, just don't get anxiety and how it works. You can't just turn it off. My Nurse Practitioner didn't get it and didn't want to prescribe the anxiety meds I've been taking for years. At one point I couldn't eat because I felt like I couldn't swallow. Went down to 97 lbs. The mind runs away with itself. She wanted to know why I was anxious. That's a whole other thing. I'm anxious over the fact that I can't work, barely walk, barely move, finances, etc. An anxiety attack can start with something as simple as maybe a sore throat and then the "what if's" kick in and a full blown panic attack ensues. I've been having them my whole life. Mum had them, my granddaughter is really bad. They just don't get it. Hugs to you phebamom. x
You are so right. They just don't get it. I have been seeing a counselor because of family trauma for over a decade. She prescribed BuSpar, which worked a miracle. I can no longer take BuSpar because I am in kidney failure. You are correct, we grieve the loss of our health and body like the loss of a loved one. There is so much I want to do. My body won't let me. I listen to a song, Duran Duran, Ordinary World. Helps me sort it out. I get panic attacks at any family gathering. I no longer have a family, My husband's extended family sends me into panic attacks. Just a crawling out of my skin feeling, where I have to get away by myself. Only those who have them, understand the impact of panic attacks.
Even my daughter who has been blessed to be bypassed and has a daughter who has severe anxiety admits she doesn't get it, and therefore sometimes dismisses it. My grandson is fine. My sons are fine, as far as I know. I was supposed to have a CT scan with dye injected and I tried, but at the last minute I asked the technician to not inject it. Now had I had time to medicate myself prior, I might have been ok. Sounds ridiculous right. At least they said they understood. MRI coming up. Pretty sure with dye. You can best believe I will take something prior. I have 8 vertebral fragilty fractures. Enough to send anyone. Lol. Take care my friend.
perhaps you are listening to an inner voice with not wanting the contrast dye. I suggest some regular blood work prior to the test. Ask them specifically to test your kidneys. A GFR test is what is needed along with a kidney panel. i.e., creatinine levels, etc. Contrast dye is very hard on kidneys, especially aging kidneys. We survivors of early trauma often develop into what are known as : "Sensitives". We had to become super sensitive to our environment to survive it. I find when I don't listen to that inner voice I have great conflict, usually because it is trying to tell me something. Eight fractures totally sucks. I have PMR/GCA, MGUS/MGRS, with uncontrollable high BP and kidney failure, possibly Multiple Myeloma. I will know more when results of bone biopsy comes back. Oh and on CPap mask since January. Massive nocturnal panic attacks . Been through ten different masks nothing works.
My problem is family issues did not stop with adulthood. IF ever there lived and breathed a more evil, brain dead, whackadoodle bunch than my blood family, I would be fair amazed. I was my mother's caregiver with terminal cancer. My family drove me over into complex PTSD with their constant bickering over power and money. Now I can't be in large crowds without flipping out. Covid did not help the situation. Counselor told me to not even try at this point. She suggests I am doing well with monthly meet-up with sewing friends. So, yea, I totally get where you are. Have them check your kidney function before you do the dye.
I slept well when younger but started to have disrupted sleep, mostly due to work I believe. So I could get to sleep ok but woke up and couldn't get back to sleep. This continued when I retired, but was not too bad, but has got worse since I've taken medication for PMR. As someone else has said, when I wake up now I am Zing! wide awake and have to read for hours to nod off again. Interestingly, I am taking a break from Alendronic acid to try and stop a gastric problem and am sleeping much better as a result. If I do wake up, which is fairly normal for me, I can usually get back to sleep in short order. (the gastric problem has not gone away but is restricted in the main to mornings).
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