An early start to the day.
Posted , 10 users are following.
I have found that by getting up by 7 am and having early breakfast and meds before the stiffness and pain kicks in i am having far better days. i am still taking 17 mlg of predisolone daily. i hop in a hot shower which also helps .
A huge improvement as to the state i was in two weeks ago when i was hardly able o get dressed in the mornings.
My next challenge is coping with a long haul flight with an 11 hour time difference Any helpful suggestions.
A holiday i booked long before this all came up.
0 likes, 11 replies
jillian92038 maureen49480
Posted
Interesting. I find the opposite and a slower start helps. It also gives me a good excuse to have DH bring me a cuppa in bed!
we fly at least twice a year across from UK to California and I find that taking a half dose when I would normally take it at home and then a full when I am on US time 8 hrs difference works for me.
Good luck and enjoy the holiday.
maureen49480 jillian92038
Posted
Thank you i had thought of taking a half dose., and the rest later.
I dont want to go back to the awful pain i was in.
I am flying to Bali and joining a cruise going up the coast of Australia to Cairns and will be away for a month.
Hopefully the warmth will work wonders.
maureen49480 jillian92038
Posted
Sadly i dont have the luxury of being brought tea in bed as I am a widow.
I am not sleeping anyway so glad to get up.
Moving is certainly better for me.
This regime is working at the moment so i will keep it up!
Heron82 maureen49480
Posted
Hi Maureen,
how do you describe your stiffness? Are your legs swollen and heavy to move and movements slow or are your actual joints stiff?
I do the same as you do, take my meds before 7.30 after my breakfast. To cope with the 50mg pred per day I am keeping active to manage the "on speed" like side effects. However I am not sleeping well at night despite being very tired. Have some residual temple pain and aching legs. Now black shadows under my eyes. I was perscribed 10 mg amitriptyline to take going to bed but after 1 tablet I felt so awful the next day that I didn't take any more.
You should be fine on the flight provided you get up and move around and flex your legs and ankles regularly while sitting. I flew to the US quite a bit after I was first diagnosed and was fine both on the flight and with the time difference. A holiday may be just the thing you need right now. Have a lovely time.
Best regards
Heron
maureen49480 Heron82
Posted
I described it as stiffness but really it is just intense pain in my neck, shoulders, hands and wrists and my fingers lock at times. Also my back and thighs.
I am having private physio once a week and he stretched my neck which has helped.
By changing my routine i have five good days out of seven so things are getting better.
Positive thinking and determination I have decided is what is needed to learn to live with this. No point sitting around and moaning as nothing is going to change it until it burns itself out.
I was on Amitripoline for years before i had my knee replacements and found it a wonderful anti inflammatory. I found that even just one tablet a week as a maintenance dose worked wonders. You do need to take a stomach protector as well. I thought that Amitripoline had been withdrawn from the market now.
50mg pred is a huge dose? DID YOU MEAN 5mg?
Anhaga maureen49480
Posted
Fifty is a GCA dose.
Heron82 maureen49480
Posted
Hi Eileen,
I was put on 30 mg for 12 days then 60 mg pd for 1 weeks, now 50 mg for a wk, then 45 mg etc. It is a huge dose and I feel awful on it, though still woken last night with a temple headache. Seeing the consultant again on 3 Dec. The soon as I can get donw below 20 again the better.
BR
Heron
Anhaga maureen49480
Posted
Look forward to your holiday and enjoy yourself. Pace yourself so you get plenty of rest, but do as much as you can of the fun things. Oddly enough I always feel much better when I'm on holiday. I tend, however, to fall apart once I get home, so give yourself some recovery time when you get home.
maureen49480 Anhaga
Posted
Thank you , I will take your advise. I am sure the warm weather in Australia will be a real tonic.
Now i am feeling a lot better i am starting to get excited. Just dreading the journey.
Anhaga maureen49480
Posted
Sleep. I use sound cancelling headphones and find the calmest most soothing music the plane system provides (sometimes not easy, don't know why, one time the classical music was a choice between atonal twentieth century rubbish and opera 🙄😣) and zone out as much as I can. I think eyeshades can be useful too especially nowadays when even after the cabin lights are turned down people are watching (or more likely dozing in front of) screens all over the place, or your neighbours may have reading lights on. Eat sparingly, especially if food is presented at a time which is not a normal mealtime for you, time enough to adapt to time change once you're landed.
EileenH maureen49480
Posted
Most important fact: book airport assistance. It is the biggest help when travelling long distance you can have. No standing about - always a chair to hand!
When travelling west, I take the full dose as normal the day I am to travel. Then after about 22 hours I take a proportional extra dose to cover the hours until the usual dose time US time. Travelling east I find easier but do much the same to get to adjust the dose to early morning.