1. < Polymyalgia Rheumatica (PMR)

A low place tonight

Posted by paulagcl @paulagcl, Jul 7, 2023

It finally hit tonight, that my life has completely changed. I am considering redoing my financial plan and spending much more to live where I want to for the next couple of years and then enough is enough. I'm lucky that I have done almost all I wanted to in my life.
I had a wonderful husband, have a wonderful son and family, and followed my interests and abilities in art and music both as a profession and as a center of my life. People keep telling me I am strong, but I feel exhausted now, three months into this diagnosis.

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paulagcl | @paulagcl | Jul 8, 2023
In reply to @barracudacool "I hear ya. I think we all reach that point where we are just so tired..." + (show)
@barracudacool

I hear ya. I think we all reach that point where we are just so tired of this. So done with the fatigue and pain. One of the worst things about PMR is how long it can last and how variable it is day to day. BUT it does get better. You will start to have better days in with the bad ones. And then putting more of those better days together. Remember the better days when you are feeling low. And do something good for yourself today. Something unusual. Something different. Something fun. And know you are not alone.

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thank you!

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maggie14 | @maggie14 | Jul 8, 2023

I am with you in finding the chronic pain and fatigue depressing. Coming up on 2 years of coping with PMR and wondering if remission will happen for me. As someone said we have to manage one day at a time and hope tomorrow will be a better day. Hang in there my friend.

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2 replies
paulagcl | @paulagcl | Jul 8, 2023
In reply to @dadcue "The highs and lows in life are all part of the same spectrum. You need to..." + (show)
@dadcue

The highs and lows in life are all part of the same spectrum. You need to embrace all of it to fully appreciate life. I could have done without some of the lows but I survived to tell the tale. In some strange way, writing about it anonymously on forums like this is helpful.

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Yes, agreed -- the anonymous part has pros and cons but does keep for burdening friends and family who are in our every day live.

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paulagcl | @paulagcl | Jul 8, 2023
In reply to @maggie14 "I am with you in finding the chronic pain and fatigue depressing. Coming up on 2..." + (show)
@maggie14

I am with you in finding the chronic pain and fatigue depressing. Coming up on 2 years of coping with PMR and wondering if remission will happen for me. As someone said we have to manage one day at a time and hope tomorrow will be a better day. Hang in there my friend.

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The unknown is sure hard to cope with. But I guess that is life. I am thinking tonight that self-compassion is really important for us. To acknowledge that we will do the best we can, that we realize there are people worse off, but that this is hard.

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maggie14 | @maggie14 | Jul 8, 2023

I think it is important to tell our PCP how we're feeling. The fact that others are worse off doesn't help a lot but makes us feel guilty for not being stronger. We really are strong and need to appreciate that this is a difficult journey especially when we don't know if or when it will end. Hopefully soon!

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paulagcl | @paulagcl | Jul 9, 2023

Yes, good point. My rheumatologist is young and though I appreciate his knowledge and how he has handled this (very responsive when I have emailed on the online chart), the emotional side is not on the table. My primary care doctor, though, has been supportive. He's the one who suspected I have this after three doctors where I used to live missed it.

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paulagcl | @paulagcl | Jul 9, 2023
In reply to @maggie14 "I am with you in finding the chronic pain and fatigue depressing. Coming up on 2..." + (show)
@maggie14

I am with you in finding the chronic pain and fatigue depressing. Coming up on 2 years of coping with PMR and wondering if remission will happen for me. As someone said we have to manage one day at a time and hope tomorrow will be a better day. Hang in there my friend.

Jump to this post

Thank you, Maggie! I feel like I am finding friends here. It is super helpful.

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paulagcl | @paulagcl | Jul 9, 2023
In reply to @barracudacool "I hear ya. I think we all reach that point where we are just so tired..." + (show)
@barracudacool

I hear ya. I think we all reach that point where we are just so tired of this. So done with the fatigue and pain. One of the worst things about PMR is how long it can last and how variable it is day to day. BUT it does get better. You will start to have better days in with the bad ones. And then putting more of those better days together. Remember the better days when you are feeling low. And do something good for yourself today. Something unusual. Something different. Something fun. And know you are not alone.

Jump to this post

Well, I did something good for myself and a friend visiting overnight -- we went to a French restaurant and I had the most delicious lobster ravioli and wonderful conversation.

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1 reply
barracudacool | @barracudacool | Jul 9, 2023
In reply to @paulagcl "Well, I did something good for myself and a friend visiting overnight -- we went to..." + (show)
@paulagcl

Well, I did something good for myself and a friend visiting overnight -- we went to a French restaurant and I had the most delicious lobster ravioli and wonderful conversation.

Jump to this post

Outstanding. That’s a perfect response to the low. But now I want lobster ravioli. Hope you are feeling more hopeful.

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paulagcl | @paulagcl | Jul 9, 2023

Yes! Important to treat ourselves to something delicious when we are trying to follow a healthy diet!

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