I'm sorry, I'm a writer and I don't do well cutting it down to just the bones:
I was diagnosed three and a half years ago. Although it has been a mostly negative experience there have been a few gains. Like the colonial farmers used to say, no great loss without some small gain. I lost weight during that time so that when Covid came along I was at a healthy weight. Also, with everything shutting down I didn’t mind, I didn’t want to go out anyway. But that’s it. My greatest challenge has been getting used to an illness that takes years, not days, to run its course, and not being able to eat the foods I love. I tried moving down from my 3 MG dose to 1 MG last year but recently my inflammation levels have started to climb a little. I was comforted to read that this was not just me, other’s have experienced this as well when they thought they were getting over it..
If anyone is interested, I have designed a few cooking recipes that have helped. I don’t trust manufactured food, not even gluten free and it’s so expensive. I would be happy to share.
Welcome @bradninchgirl, You write just fine! ...and you are definitely not alone. If I could cook, I would love to see your recipes but I'm a creature of habit and don't want to learn to cook. 🙃 My first bout with PMR lasted 3 and half years so hopefully yours is coming to an end soon and it will go into remission.
I do stay away from most processed foods and limit the amount of sugar I take in. What is your go to recipe that you really like?
Scrambled eggs Florentine: Eggs, chopped frozen spinach and cheese. Pre cook about two or three table spoons of frozen spinach in the microwave for about 30 seconds, add to beaten egg with about half a cup of grated cheese. Cook as for scrambled eggs. It doesn't look very pretty, and the cheese helps to take away the taste of spinach. But, it takes care of at least three dietary needs in one.
Scrambled eggs Florentine: Eggs, chopped frozen spinach and cheese. Pre cook about two or three table spoons of frozen spinach in the microwave for about 30 seconds, add to beaten egg with about half a cup of grated cheese. Cook as for scrambled eggs. It doesn't look very pretty, and the cheese helps to take away the taste of spinach. But, it takes care of at least three dietary needs in one.
Hello @tonituin, Welcome to Connect. My PMR has been in remission since 2018 and I like to think diet and exercise play a large part in holding PMR at bay. If you haven't already seen my post earlier in this discussion, it has a couple of links you might find helpful - https://connect.mayoclinic.org/comment/309728/
Thanks for the links. It’s interesting to know of other peoples coping strategies. I’m not sure if others have noticed but, if I have a (rare) good nights sleep (7 hours without waking) I’m usually in more pain & stiffer for longer the following morning. In fact, I now welcome being awake & out of bed during the night for an hour or 2 as this means I’ll be in less discomfort when I wake & start my day. Lying in bed is my enemy. I’m fortunate as I’m retired & don’t have the pressure of getting up for work or to do a school run with children. A “2 stage” sleep really works for me & I can usually grab a nap during the day if I need to catch up.
Thanks for the links. It’s interesting to know of other peoples coping strategies. I’m not sure if others have noticed but, if I have a (rare) good nights sleep (7 hours without waking) I’m usually in more pain & stiffer for longer the following morning. In fact, I now welcome being awake & out of bed during the night for an hour or 2 as this means I’ll be in less discomfort when I wake & start my day. Lying in bed is my enemy. I’m fortunate as I’m retired & don’t have the pressure of getting up for work or to do a school run with children. A “2 stage” sleep really works for me & I can usually grab a nap during the day if I need to catch up.
Hey, 2 stage sleep works for me as well. Yes, being retired helps. I sleep through the night 2 or 3 times a week, but usually 3am I am up and reading for about an hour. I am still on a high dose prednisone slow taper, recovering from bout of GCA but the 2 stage sleep has been a thing even when I had weaned to 2 mg last year. I had been a night shift worker for 20+ years and relished sleeping in mornings.
Hey, 2 stage sleep works for me as well. Yes, being retired helps. I sleep through the night 2 or 3 times a week, but usually 3am I am up and reading for about an hour. I am still on a high dose prednisone slow taper, recovering from bout of GCA but the 2 stage sleep has been a thing even when I had weaned to 2 mg last year. I had been a night shift worker for 20+ years and relished sleeping in mornings.
I have been in remission for 2 years. Sleep is always an issue with aging and
prostate issues. There are some new findings suggesting that melatonin is anti inflammatory and might even help with GERD.
Hi Alan @alanbruce, thank you for starting this new discussion. It is a great topic. Notice I changed the title of your discussion a little to give it a little emphasis. I started looking at diet and lifestyle changes for helping with my autoimmune diseases after reading Dr. Terry Wahls book - The Wahls Protocol. She has an amazing story about how diet helped her MS symptoms - https://terrywahls.com/about/about-terry-wahls/
Hi John, recently diagnosed w PMR and have begun a more strict following of Mediterranean Diet, without salt, sugar and alcohol. As a wine drinker, I’m wondering if one glass of w dinner will ever be ok? Any thoughts.
Liz
Hi John, recently diagnosed w PMR and have begun a more strict following of Mediterranean Diet, without salt, sugar and alcohol. As a wine drinker, I’m wondering if one glass of w dinner will ever be ok? Any thoughts.
Liz
Hi Liz @lizward46, I gave up all forms of alcohol but did it because I also have neuropathy. I did find some information on the topic but I think it might depend on a lot of different factors.
"Can I have a glass of wine while taking prednisone?
A person taking prednisone may want to avoid alcohol until they finish the treatment. Alcohol can worsen some side effects of prednisone, such as immune system suppression, bone weakening, and weight gain. It is best to speak with a doctor to avoid serious complications."
--- Alcohol and prednisone: Are they safe to take together?: https://www.medicalnewstoday.com/articles/325112
Are you still on prednisone or has your PMR gone into remission?
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Welcome @bradninchgirl, You write just fine! ...and you are definitely not alone. If I could cook, I would love to see your recipes but I'm a creature of habit and don't want to learn to cook. 🙃 My first bout with PMR lasted 3 and half years so hopefully yours is coming to an end soon and it will go into remission.
I do stay away from most processed foods and limit the amount of sugar I take in. What is your go to recipe that you really like?
Scrambled eggs Florentine: Eggs, chopped frozen spinach and cheese. Pre cook about two or three table spoons of frozen spinach in the microwave for about 30 seconds, add to beaten egg with about half a cup of grated cheese. Cook as for scrambled eggs. It doesn't look very pretty, and the cheese helps to take away the taste of spinach. But, it takes care of at least three dietary needs in one.
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Helpful -
Hug
3 ReactionsSounds yummy!
Thanks for the links. It’s interesting to know of other peoples coping strategies. I’m not sure if others have noticed but, if I have a (rare) good nights sleep (7 hours without waking) I’m usually in more pain & stiffer for longer the following morning. In fact, I now welcome being awake & out of bed during the night for an hour or 2 as this means I’ll be in less discomfort when I wake & start my day. Lying in bed is my enemy. I’m fortunate as I’m retired & don’t have the pressure of getting up for work or to do a school run with children. A “2 stage” sleep really works for me & I can usually grab a nap during the day if I need to catch up.
-
Like -
Helpful -
Hug
6 ReactionsHey, 2 stage sleep works for me as well. Yes, being retired helps. I sleep through the night 2 or 3 times a week, but usually 3am I am up and reading for about an hour. I am still on a high dose prednisone slow taper, recovering from bout of GCA but the 2 stage sleep has been a thing even when I had weaned to 2 mg last year. I had been a night shift worker for 20+ years and relished sleeping in mornings.
-
Like -
Helpful -
Hug
2 ReactionsDid you find you had less pain when you had a 2 stage sleep compared to sleeping through the night? Especially when you were on your low dose?
Hip pain woke me some of the time, so getting out of bed helped. Other than that I didn't notice a big difference.
I have been in remission for 2 years. Sleep is always an issue with aging and
prostate issues. There are some new findings suggesting that melatonin is anti inflammatory and might even help with GERD.
-
Like -
Helpful -
Hug
1 ReactionHi John, recently diagnosed w PMR and have begun a more strict following of Mediterranean Diet, without salt, sugar and alcohol. As a wine drinker, I’m wondering if one glass of w dinner will ever be ok? Any thoughts.
Liz
-
Like -
Helpful -
Hug
1 ReactionHi Liz @lizward46, I gave up all forms of alcohol but did it because I also have neuropathy. I did find some information on the topic but I think it might depend on a lot of different factors.
"Can I have a glass of wine while taking prednisone?
A person taking prednisone may want to avoid alcohol until they finish the treatment. Alcohol can worsen some side effects of prednisone, such as immune system suppression, bone weakening, and weight gain. It is best to speak with a doctor to avoid serious complications."
--- Alcohol and prednisone: Are they safe to take together?: https://www.medicalnewstoday.com/articles/325112
Are you still on prednisone or has your PMR gone into remission?