Inverse relation between sleep and PMR symptoms

@wendy517
The problem with PMR is we don’t “look” sick so it’s hard for others to understand what we are going through.
That’s why it’s helpful talking to those of us who understand.

@caroljeand
Thank you for validating that for me. Its crazy when you have so many around you that you know think you're fine and have to be faking it, you end up starting to question yourself. Like, am I a wimp and can't take it?? I broke my thumb, got it casted and skied the next day with socks over my cast. I work through pain so I know I'm not a wimp.

TU!!!

@eakin
Movement helps my symptoms, sometimes, not all the time so more movement during the night would male sense to feel less pain versus, no movement all night and then get up after 6-7 hours of sleep. Pain wakes me up, often, because I move a lot, roll from one side to the other all night long. Pain in the am can definitely be less, the more ive moved. I have an alarm on my fitbit that goes off of I haven't taken more than 250 steps that hour. The more sedentary I am, typical for Pain to be much worse.

I'm undiagnosed at this point with PMR & GCA, my Mom has both. Ive got Hashimotos and ocular rosacia and straight rosacia. I was diagnosed with Polycythemia Vera in early 2023 due to my HGB going up to 18. They did 5 blood draws, brought me down to 11, which wrecked me for a good week, could not get up a flight of stairs without resting, BP was going way high, then low, my level of pain was very bad, whole body itchy, crashing headaches that were debilitating etc. I pushed to the 3rd oncologist because 2nd wasnt listening to me. Finally got a BMBX (horrible test but over pretty quickly) and low and behold, NO blood cancer.

They still dont know why it did what it did, its ticked back up to 14.9 and the pain in my hands, feet, shoulders, hips, is all back. Went back to the rheumatologist who found my Hashimotos, we're scheduling ultrasounds to check for inflammation. My gut is telling me my pain is Autoimmune but my inflammation isn't sky high.

I think my family pretty much feels im "faking" to get attention. My sister has cancer and she gets lots of attention, and rightly so, but she ended up with the same exact gut issues I have (she had the ring done to lose weight, never adjusted it for MANY years and gained the 80-100 lbs back, then got the gastric sleeve, then got esophageal cancer. She has next to NO pain, blows my mind. I have a very high pain tolerance which I think can be detrimental because I down play my level of pain most of the time.

This health journey has been a good 3 years with no answers yet. Its depressing but I'm not giving up, I want to ski till im 90, travel the world etc. I was forced to retire at 59 because I was so sick, but yet my family feels like im faking because I don't "look" sick moat of the time and dont have.cancer. They were all very concerned when I had PV, not any more.

Its ok, I have a dear friend who supports me 💯 and I have these forums which have been a godsend 🙏

Thanks for allowing me to vent once in awhile.

Stay strong 💪 🤘 ✨️

@eakin
Movement helps my symptoms, sometimes, not all the time so more movement during the night would male sense to feel less pain versus, no movement all night and then get up after 6-7 hours of sleep. Pain wakes me up, often, because I move a lot, roll from one side to the other all night long. Pain in the am can definitely be less, the more ive moved. I have an alarm on my fitbit that goes off of I haven't taken more than 250 steps that hour. The more sedentary I am, typical for Pain to be much worse.

I'm undiagnosed at this point with PMR & GCA, my Mom has both. Ive got Hashimotos and ocular rosacia and straight rosacia. I was diagnosed with Polycythemia Vera in early 2023 due to my HGB going up to 18. They did 5 blood draws, brought me down to 11, which wrecked me for a good week, could not get up a flight of stairs without resting, BP was going way high, then low, my level of pain was very bad, whole body itchy, crashing headaches that were debilitating etc. I pushed to the 3rd oncologist because 2nd wasnt listening to me. Finally got a BMBX (horrible test but over pretty quickly) and low and behold, NO blood cancer.

They still dont know why it did what it did, its ticked back up to 14.9 and the pain in my hands, feet, shoulders, hips, is all back. Went back to the rheumatologist who found my Hashimotos, we're scheduling ultrasounds to check for inflammation. My gut is telling me my pain is Autoimmune but my inflammation isn't sky high.

I think my family pretty much feels im "faking" to get attention. My sister has cancer and she gets lots of attention, and rightly so, but she ended up with the same exact gut issues I have (she had the ring done to lose weight, never adjusted it for MANY years and gained the 80-100 lbs back, then got the gastric sleeve, then got esophageal cancer. She has next to NO pain, blows my mind. I have a very high pain tolerance which I think can be detrimental because I down play my level of pain most of the time.

This health journey has been a good 3 years with no answers yet. Its depressing but I'm not giving up, I want to ski till im 90, travel the world etc. I was forced to retire at 59 because I was so sick, but yet my family feels like im faking because I don't "look" sick moat of the time and dont have.cancer. They were all very concerned when I had PV, not any more.

Its ok, I have a dear friend who supports me 💯 and I have these forums which have been a godsend 🙏

Thanks for allowing me to vent once in awhile.

Stay strong 💪 🤘 ✨️