Sharing ways to stop coping and start living!

I’d Ask your PC to get blood worked for SED and CRP….mine was off the charts and my PC ordered prednisone until i got into Rehumatologist.

I'm 73 and just diagnosed yesterday, although I've been dealing with it undiagnosed since October. It's very depressing when you have to change or eliminate the things you do or change how you have to do things. I was on 15 mg prednisone for 3 weeks because my rheumatologist suspected this when my blood work started coming back. It didn't make much of a difference at that dose. I'm now up to 25 mg and I worry that maybe prednisone isn't going to work for me. I've been retired since covid started in 2020. My incentive to keep going (besides my wife) is we have a daughter who will be 6 in the next week and a half. I can't take her to the park or play with her like I used to doing. I'm always tired and sore now. I feel like I'm a burden when I can't do things that I used to do. That's where I am as of today.

@kjoed53 ouch…..been there done that and it’s very lonely.
You are not alone, you are your own best advocate.
Ask your dr…..some things you’ll learn from this group, ask anything, someone will have similar experiences.
I.e., It takes awhile to adjust meds. I had to split the dose so when i woke up in the morning i was not in such pain. Also, sometimes you have to go up, in order to go down in dosage. Chase the Dr. keep a journal of daily meds, pain level and activities.
Lastly, hang in there…your daughter is your goal!

@kjoed53 thank you for sharing your struggle. You are not alone. I was diagnosed after losing my husband and found that the help of my grief therapist was also a great help in learning to deal with PMR. Also it helped to meet online with her. Take care.

@tweetypie13
Thanks tweetypie, I am my own advocate. I've seen 7 doctors so far and I have been lucky that I've not had to wait months between them. I'm a little concerned that I may need to find another rheumatologist if the prednisone doesn't work and he sends me back to the neurosurgeon who sent me to him.

@kjoed53 ask abt biologics too…..

Kathleen Claire, thank you for your post! Although no one asks or wants to be on this PMR is a journey, full of ups and downs, it is important to find those moments of distraction and look for blessings in simple things.

Prior to PMR, I was a '"get up and go" 59-year old gal with almost no physical limitations and "strong like bull." When suddenly just getting out of bed, trying to lift my arms, or going up/down stairs was a painful task it hit me hard not only physically, but mentally. Although I hoped for the miraculous Prednisone cure, that was not my experience and I'm beginning to accept that this is something I need to make peace with in the process.

I've learned to stay tight with God. We live in flawed bodies in a flawed world, and bad things do happen to good people, but I believe that He can work all things for good, even if they don't make sense or cause suffering. In Christian circles there is a saying, "If He leads you to it, He'll led you through it." It is in this I find peace and reassurance. It is not about my will, but His. Is surrendering easy? Is it all rainbows and unicorns? Of course not, and sometimes it is minute by minute, but it releases our tight fists of control to Him.

2 Corinthians 1:3-4: “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”

Psalm 23:4: “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.”

What a timely and valuable post. I was diagnosed with PMR in October but changed to GCA in December. I’ve been tapering and two weeks ago went from 7 to 6 mg. That’s when the poop hit the fan. Almost immediately I started having “dark” thoughts. Light headedness, nausea and a feeling my eyes were sinking back into my skull. Constant headaches. I’m also taking Rinvoq to help with tapering. The dark thoughts scared me the most. I have neuropathy in both legs which is a constant source of pain. My thoughts were why is my body failing me? Is this my future? I knew depression and anxiety go hand and hand with prednisone but I was able to manage. My breakthrough came four days ago after a fitful nights sleep. It dawned on me my body is not failing me, I’m getting older is all. I’m 69. So many unlucky folks have situations far worse than me. But yet we all survive somehow. We all know PMR/GCA are not like the common cold or flu or my recent total knee replacement. You know with those illnesses they will pass and things will go back to normal. We all hope for remission but have no timeline. The goal post is way off in the future.

I recently heard it said and it slapped me in the face” I can do the things today that my 80 year old self wished they could still do”. I can golf, hold my grandbabies, hug my wife, enjoy a cold beer, ride my motorcycle and mountain bike and look forward to remission. All and all not to bad. Yes, it’s a struggle to remind myself but what’s the alternative? I look forward to the stories on this site and how we cope. Thankful I found it.

Thank you for the inspiration! What we focus on expands and our mindset around this is everything. I have bad days where I allow it to get to me, but mostly I keep moving and I start my day with gratitude. I pray, I journal (though my writing is a mess thanks to PMR), I walk, teach Sunday School, still work, and watch my grandkids once a week, etc. Life goes on and so must we. It's a miserable disease, but suffering is part of life and how we approach our pain and suffering matters. We aren't victims and we can do those things that improve our lives and the lives of those around us. I hate PMR, but making healthy choices, surrounding myself with good and supportive people, and keeping my thoughts positive and being grateful for the blessings I do have keeps me forward focused. Thank you again for your positive spirit!

@zirbellm Thanks for your post. My experience is similar to yours although I am older. This disease affects you mentally as well as physically as you realize your limitation's. Some days it is very hard to cope. Your post inspired me to try harder.