Posted , 12 users are following.
I am managing on 5/6 hours sleep but am concerned and fed up of whiling away the time once I wake up. On 9mg a day and take 5 with breakfast and 4 with evening meal . Any thoughts please?
0 likes, 17 replies
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elizabeth40672 Frit
Posted
Silver49 Frit
Posted
I can understand your concern, Frit, and it's sometimes difficult to manage the time. I was all ready to do lots of chores around the house but would have wakened my OH. I found a cup of camomile tea helped me relax and I could often get back to sleep. I also cut all caffeine and although it was for a different reason it helped. I am now on 2mgs and it has the opposite effect some of the time and I feel I could sleep on. As your steroids drop it will rectify this problem. I think many of the people on this forum can relate to this. It will pass.....eventually.
rocketman42 Frit
Posted
Hi Frit- I'm dealing with the same issue. Up between 3:30 and 5:00 everyday. Makes for a long day.
I have tried both splitting dosage and taking it all in the a.m. with the same result. I compensate by trying to go to bed early so as to get enough sleep. I do like the quiet time but do not like having to wait hours for the sun to rise.
sandy65909 rocketman42
Posted
I'm on your schedule! Was getting up at 3:30 am and slept late today...4:30! My doc has me taking Pred at 5:00 am so I guess I'm over anxious and don't want to be late. She claims that time results in less Pred side effects. I do split my dose 2/3 in the morning and 1/3 at 3:00 pm because pain creeps in. This seems to work best for me. Tapering from 25 mg, On 22 mg now!
I drink coffee, journal, communicate with forum friends, pet and feed my dog and check email. Lately, I have been napping in the afternoon. I never experienced this in my life. Lots of changes with PMR!
Michdonn sandy65909
Posted
sandy65909, any chance of adding a little walk, just to get the juice moving. Think positive and get a few steps in, in April I was in a wheelchair, just a few a day made a big difference.
Smiling 🙂
sandy65909 Michdonn
Posted
Since I have osteoporosis, exercise is one of my main remedies. Not working gives me plenty of time to focus on dealing with PMR. Physical therapy, massage, belonging to 2 gyms and walking my old dog are time consuming activities. Must. add constantly remembering to smile!
Stay happy and keep the suggestions coming!
Michdonn sandy65909
Posted
Looks like you have exercise well covered, good for you. Stay active, positive and keep smiling.🙂
EileenH Frit
Posted
Are you taking the dose in 2 lots for any specific reason? While pred doesn't affect sleep for some people it can be a problem and for some of them taking all the pred in the early morning lets their body settle down by bed time - some, not all.
Waking in the early morning about 4am-ish probably coincides with the release of the inflammatory substances in the body - a lot of people find that. However - if you take your pred before bed often you can get to sleep and it minimises the sensation next morning as the pred is already present and working. Or you can utilise the early morning waking and take your pred then - so by the time you want to get up for the day it has taken effect and the pain and stiffness are already dealt with. Learning to accept the short night and just lying and relaxing is probably about all you can hope for if you really can't sleep - one lady has made close friends with BBC World Service and learnt an awful lot over the years...
maid_mariane Frit
Posted
Hi Frit, i suffer from terrible sleep getting 4-5 hours is the ultimate dream which i get once in awhile. I'm up and down and tossing and when I have the energy to get up to my reclining chair i love the peace snd solitude wirh my coffee. I take the time to do these emails catch up on news on tv or a nrw series. Many times i manage to grab another jour of sleep in my chair. I use to get up and run and do chores but no longer much slower but i like my quiet time. I don't know how you manage to work i had to go off.
Bless you and hope the support helps.
Mariane
ClaireJG maid_mariane
Posted
Hi Mariane
Your post cheered me up... Whenever I read about people who still work with PMR, I feel a little despondent. I'm on long-term sickness and have just started on half pay. I tried to go back to work after diagnosis, but was unable to pace due to the nature of the work. I'm not psychologically or financially ready to retire yet, so I admire your strength to leave work completely. I also admire you for accepting that you can no longer run or do chores and now appreciate your "quiet time", enjoying the peace and solitude with your coffee.
It's always better to look on the bright side, see the advantages in a situation and enjoy the way things are now. As a friend said to me "seize the day - no one is promised tomorrow".
maid_mariane ClaireJG
Posted
Hi Claire my husband was retired and i wanted to and pmr made me retire or be on sick leave. It also said you must slow down which as you know we do.
As for sick leave I've been in a legal battle with my long term holder who refuses to pay so have hired lawyers. In Canada alot of the companies automatically refuse to pay in hopes of settlements thus they save money and you loose. The problem was i was off sick proor to diagnosis now they agree i had this from time of leaving work now it's how long will you habe it. Our fedral disability plan says long term but as i said insurance companies are all about money.
I'm fortunate that we could afford earlier retirement with adjustments. Not many can. So enjoy what you can do take breaks or cat naps which i do in my recliner and enjoy your friends and family. Don't forget to laugh😃
There is always someone worse and this forum is invaluable for learning.
Michdonn Frit
Posted
Hi Frit, split my 15 mg dose 12 mg after breakfast and 3 mg at bedtime, 10:30 to 11 PM. Sleeping my normal amount, up once to relive myself and change my T shirt from night sweats.
On a slow taper from 30 mg. Think positive and keep a smile on my face. 🙂
ClaireJG Michdonn
Posted
Hi Michdonn
I can relate to the tee shirt situation... I have a towel in the bed with me.😄You're doing well with your tapering. Have you had any increased pain at the lower doses?
Keep smiling!😄
Claire
Michdonn ClaireJG
Posted
ClaireJG, No real increase of pain. Did have a minor flare 2 weeks ago, jumped dose from 15 to 20, for 3 days and have been PMR pain free since. Today a very quiet day for me, had an eye exam this morning, eyes are still okay. Hope you are doing good, think positive, active and keep smiling. 🙂
ClaireJG Michdonn
Posted
Big smiles and positive vibes going your way!
Michdonn ClaireJG
Posted
ClaireJG, things are going good! Yesterday had eye exam, eyes are in good shape no eye glass correction needed, no damage from Diabetes and no change in cataracts. The day before appointment with enterologist, explained how I want to taper, showed DSNS method, PPM article and explained my concerns with the taper the rheumatologist, want me to use. She said she will support me if the rheumatologist, stop seeing me. So yes, I am feeling very good have a big smile on my face.
Thinking very positive! 🙂