The good and bad days of PMR

[Marie1479]

Hi Everyone,

I am holding steady on 15MG after a recent flare since Feb 8th where I had to go back to original starting dose. It took a week to adjust to the new dose. The past 4 days have been wonderful. No flu-y feeling (for me the worst part of PMR) and very little shoulder and neck pain. Just when I thought things were going well, PMR reminded me I am still sick again. I made the mistake of going to bed too late last night after working all day followed by PT (for PMR related bursitis in my left shoulder). Came home, cooked dinner for the family and then told my husband I didn’t have enough energy to help clean up. Thankfully my husband only needs to look at my glassy eyes to know PMR is getting the best of me. Went upstairs, cried my eyes out and planted myself in front of the TV under an electric blanket until I fell asleep around midnight. This was a big mistake because I wake up at 4:30am for work and 4 1/2 hrs sleep is not enough when you have PMR. This morning was a challenge to get to work. I normally would have called in sick but it is the last day before recess and I had too much to wrap up before the break. As busy as I am, I made sure to take 5 minutes to write to all of you as it is therapeutic for me. What have I learned in the past 4 months? I can no longer keep up the pace I did prior to PMR. Getting a full night’s rest is essential! Reading as much as you can from legitimate sources. Kate Gilbert’s PMR/GCA book is my companion! Keeping track of how you feel because tracking data can reveal patterns, such as when I taper it takes me a around a week to adjust. PT, although quite beneficial can be tricky. My PT referred to my illness as RA. I was quick to corrected him and asked him why he didn’t look at my chart before my appointment?? He obviously never heard of PMR. Look it up for goodness sake! Yes, steroids have diminished my normally patient filter especially with uninformed medical professionals. I also say "no" and "I know what is best for me" a lot now :).

Wishing all of you a glorious weekend. It is supposed to be 60 degrees here in Long Island on Sunday!

[PMRpro Ambassador]

Good - it's a steep learning curve but I think you might get at least an A!

But next time? Get a carry out!

[Marie1479 in reply to PMRpro]

Yes, I am learning. I've been eating low carb/sugar and super clean so takeout is limited but certainly and option 😊

[PMRpro Ambassador in reply to Marie1479]

Not saying for EVERY night!

[DorsetLady PMRGCAuk volunteer]

Wish it was going to be 60 degrees here, but we'll have to manage with 16! Still it's going to be fine!

Glad you're learning the ropes of this pesky illness, but totally agree with PMRpro, after a busy day - ditch the cooking!

[Marie1479 in reply to DorsetLady]

We were in quite cold this past week. 60 is not normal but will take it!

[PMRpro Ambassador in reply to DorsetLady]

Er, 60F is 15C.

[Marie1479 in reply to PMRpro]

Ummm, Yeah that would be 140 degrees, a tad bit too hot for me. Lol. I thought 15degrees was a bit cold for UK. It's nice to laugh on the bad PMR day !

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Just goes to show I still have a bit of Pred head!! And a fully signed up member if the idiots club!

Duh!!

[Marie1479 in reply to DorsetLady]

Speaking of Pred head, whew I started with that recently. I am an assistive technology specialist which is quite technical and lately I have been experiencing some major brain farts. Horrible!