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 💪 🤘 ✨️

@marymckeith my husband and I got both flu and covid boosters 2 weeks ago. No problem. With immune system more susceptible to things being on prednisone and kevzara I thought it would be helpful. Rheumatologist and pharmacist agreed.

@martha13

I no longer have too many sleep problems although my wife would disagree when I wake up early. I like to be awake at the first hint of daylight. That is actually how the sleep/wake cycle is supposed to work.

Waking at the first hint of daylight is the normal circadian rhythm which involves decreasing melatonin and increasing cortisol levels. I must be making cortisol because my sleep/wake cycle is more normal now. I'm no longer taking Prednisone and I don't wake up with PMR pain anymore so I can't say either one of those things cause me to wake up early.

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I had trigeminal neuralgia (TN) in addition to PMR and other things. I know about the effects of amitriptyline not to mention all of the many other medications used for nerve pain. Neurological side effects include sedation and coma. I was never in a coma but I could certainly sleep for a long time when I took those medications for trigeminal neuralgia.

I had to stop taking all the medications used to treat trigeminal neuaralgia and only took Prednisone. The neurosurgeon that finally stopped the facial electricity was incredulous that I only took Prednisone.

Prednisone is not a standard, long-term treatment for trigeminal neuralgia (TN). While steroids can sometimes be used to manage acute flare-ups, they are not a primary solution for the underlying cause of the nerve pain. The neurosurgeon said he usually saw a list of pain medications a mile long for patients with trigeminal neuralgia.
https://pubmed.ncbi.nlm.nih.gov/36113711/
Regardless of what the above link says ... the microvascular decompression (MVD) surgery I had was the best option. Trigeminal neuralgia isn't called the "suicide disease" for nothing. I lived with trigeminal neuralgia for close to 25 years until I finally had the MVD surgery that completely stopped the facial electricity from recurring.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11884208/
and
https://pmc.ncbi.nlm.nih.gov/articles/PMC5849951/
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It only took a neurologist a few minutes to diagnose TN. I got referred by my ophthalmologist who was treating uveitis at the time. I only mentioned the electricity near my left eye thinking it had something to do with uveitis.

Since I was also diagnosed with PMR -- no doctor ever said the facial electricity caused by trigeminal neuralgia (TN) was GCA. The "electric" facial pain characteristic of TN is typically distinct from the types of facial and jaw pain associated with GCA.

@dadcue thank you so much for your comment on the difference between the transgeminal neuralgia pain and GCA I have TN and TMJ so was very concerned I would get GCA pain and not realize it. The prednisone prescribed for my PMR has helped alot with the TN. Thanks again, helpful info.

@rhonna

The prednisone prescribed for PMR made my TN attacks somewhat tolerable. Those electric shocks to my face--I called them "zaps" ---were an indication that my "systemic inflammation" level from PMR was getting dangerously high. I only needed to count the zaps I got in an hour to know when I needed more prednisone. When single zaps of electricity started to happen in pairs and triplets it was only a matter of time before prolonged facial electrocution was going to happen if I didn't significantly increase my prednisone dose.

I was thinking PMR was a blessing because I could take prednisone prescribed for PMR and also use it for TN flares. The sad part was taking prednisone for TN only delayed the surgical intervention that was needed. I don't know how I ever thought prednisone was helping me cope with TN when surgery could have prevented the facial electricity at least 10 years sooner.

@dadcue thank you fir your comment. My TN is not so bad yet however, my doctor said she can prescribe something. Those other medications have long term affects, so if it gets too bad, I will now consider surgery. I did not know that was an option. Thanks for sharing.