How are you doing this week? Is it a good week? I sure hope so.
Today, I am writing with good news.
I think that I may be in remission from my PMR!!! It has been close to 3 years (next month) since I started getting stiff from PMR and 2 1/2 years since diagnosis.
The reason that I say that I think I may be in remission is that I am not entirely sure. This elusive and annoying condition is creeping away so slowly and quietly that I am not shouting it from the rooftops. I hate to jinx myself.
Here's what's happening to give me signs that I am in remission from PMR:
1. I have been able to wean off all steroids for the past month! I was still waking up stiff (but nothing like previously), so I started taking Aleve (at dinner) instead of steroids. This helped tremendously with morning stiffness.
2. My adrenal glands have woken up. I am officially no longer diagnosed with adrenal insufficiency per my endo after my second ACTH stim test (I passed!). This is a huge blessing for me as adrenal insufficiency from long-term steroid use is scary, feels terrible, and can be life-threatening.
3. I have more energy. Hallelujah for that! I may never be an energizer bunny, but I don't feel like I am dragging myself along anymore. I am getting more done throughout the day and have longer stamina.
4. I can get up and down off the floor fairly quickly. Still, I wouldn't say I like to sit on the floor to play with my grands as it is uncomfortable, but who cares. This is progress!
5. I have started to exercise and get back into life more. I joined a pickleball team and love it! I even got a massage for the first time in 3 years and could turn over on the table and lay flat on my stomach! You all know that these simple moves are a feat with PMR.
6. My inflammation markers are normal (although I know that you can still have pain and stiffness with normal markers).
7. This past week, I went off the Aleve too! I am crossing my fingers that this holds!
Here's what's weird and part of why I hold my breath on this good news.
I still have some aches and pains. But now that I have entered my 60s, discomforts can be expected, right? Also, I am horribly deconditioned as far as flexibility and strength. It will take time to get that back (hopefully, it will come back!).
But my stiffness is not typical old-age aches and pains. It is in my buttocks, mainly making sitting and bending over challenging. So that is odd and may be remnants of my old friend PMR?? The good thing is that it comes and goes. One day, I am feeling perfect playing pickleball. The next, after a short walk uphill, I can barely walk for the rest of the day.
So you see, my pain is different now. It is not in my shoulders at all! Also, the pains are getting less and less. And they are so weirdly fleeting.
For example, I just drove to my daughter's house 8 hours away. This trip would have been excruciating in the past, rendering me lifeless for a day with much pain when walking afterward. This time, as I was driving for the first 2 hours, I felt the creeping discomfort seeping into my buttocks. I pulled over to take a break and walked stiffly around like the tin man, hoping to return to the drive quickly.
I climbed back into the car, disappointed. I thought I was going into remission. This was a BAD sign! Then, oddly, NO PAIN for 6 more hours of the drive! That's what I mean about fleeting pain. Here one minute. It was literally gone the next! It is not even worth acknowledging as it comes and goes and moves around so quickly. I figure, if this is the way it will be, I'll take it!
My friends and relatives my age are starting to have aches and pains. Also, I had neck stiffness before my PMR diagnosis. I wonder if this is about as good as I will get. Maybe I am at a new "base level", and it is not PMR that I still feel on occasion.
With continued exercise for stretching (Yoga) and building strength, I can see myself continuing to improve over time.
Now that I don't have to move through the pain with a smile pasted on my face when miserable, I feel like I am coming back to life!!
I am finding absolute joy in life now. Everything is not a great effort anymore, and simple things bring great pleasure. I am blessed and very grateful to be in this place at present!
I plan to forever stay on a low-carb, gluten-free, no-sugar or preservative Paleo-type diet. I never want to go back to my early PMR days again. I am praying that by continuing to live low-stress (as much as humanly possible), exercising, and eating right, this beast never returns.
I pray for good news for all of you sooner rather than later. The progress is so slow that it is hard to tell if you are improving. Live each day but look for signs of gains over longer periods of time. Otherwise, you may miss it.
I honestly never thought that I could make it to this point once I was below 5mg Pred due to all of the setbacks and excruciatingly slow progress. So keep at it with high hopes and lots of grace for yourself.
Take care, my friends.