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Progression of other ailments after PMR diagnosis
Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (12)Comment receiving replies
@dadcue, @orangecat, @nyxygirl, @johnbishop, and all...
Well, I got my first taste of yucky PMR and GCA the day after my 1st Covid infection last July. My have been after 2nd in Nov... doesn't really matter now. It was horrid. Quite a shock to my and sent me into a 3-5 day pain binge in bed and frightened not knowing what had hit me. I called my Primary who diagnosed over the phone and sent me Prednisone, I believe 10 mg daily at first. Went to 15 mg daily, now after a year, down to 8 mg daily and will not even consider reducing further. My Rheumatologist added 7.5 mg Methotrexate weekly. Wow, did that help! I still take the Methotrexate and he tells me I appear to be at the sweet spot for boxing in these things.
Much better, yes. But, now, have a bunch of pain on my right arm, severe nerve shocks occasionally in the middle of my forearm that debilitize the arm for several days. Now have electrical shocks from my shoulder to fingers, along the shoulder up the right side of my head, with bad headaches, right ear ache, and right jaw pain. Not heart. Not TMJ. Seems to all be connected with the right nerve traveling that route. Blurred vision is part of it at times. Now, for several months, I've had severe heat attacks on the right side on of my face... flushing bright red, very hot to touch that spreads to my entire head. Then, begins the sweating with sweat pouring off my temples onto my face, in my eyes, down my neck... all over my head.
Rheumatologist says not Vasculitis, which I do have. Not related, per him, to PMR or GCA. Neurosurgeon says not related to cervical nerve issues I've had since tennis accident in my 20's. So, while in hospital a couple months ago with heart attach/disease issues, an angel nurse brought me an ice pack to put under my head at the bend in the neck/cervical vertebrae. It all stopped. No more flushing, no headache, no heat, no sweating, no right arm issues.... I slept soundly and without interruption for the first time in months. And no additional medication. AND, no diagnosis.
Since, at home, in bed most of the days, I keep a cold cloth on my right neck at the vertebrae along the shoulder. At times I sleep, I wipe my face frequently with a cold cloth, and often add another cloth on top of my head!!!! next to the bi-pap head gear! Surely good I sleep alone or I'm sure by now I would!
There you go. I still think it had to do with PMR, GCA or Vasculitis. makes sense to me... Perhaps there will be an answer. Currently, I'm tired of it all and just want to enjoy the relief I'm getting. Mayo ask more questions again. May not. Neurology should be involved, but... So, here we go again, right? I prefer a break from the constant fights for answers. Tired of fighting. So, cold cloths it is. Eating cold helps too, some,
That's my story for now. Anyone make sense out of it? Share some of it? Hope not, but kinda would like a partner in this distress...
Blesssings. Elizabeth
Replies to "@dadcue, @orangecat, @nyxygirl, @johnbishop, and all... Well, I got my first taste of yucky PMR and..."
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My first experience with an autoimmune disorder wasn't PMR or GCA. It was triggered by an infection. The disorder I first encountered derives its name from a "reaction to an infection" and is called Reactive Arthritis (ReA).
ReA pain was the weirdest pain I have ever experienced. Going to sleep at night was suddenly turned into a harrowing nightmare of excruciating back pain. However, I would wake up and still have pain. Instead of saying I was going to bed to sleep, I would say my bedroom was a torture chamber and I was going to bed to be tortured.
If the nightly torture wasn't enough, my encounters with health care providers during the day weren't very helpful. I don't think they understood the amount of pain I was having every night. I wasn't having too much pain during the day during my visit with a doctor. The recommendation was ibuprofen and a new mattress.
The nightly torture went on for a couple of months. I'm not sure if all the diarrhea was an enteric infection OR from toxic amounts of ibuprofen. In any case, I wound up in the emergency room severely dehydrated and believing I was on the verge of death.
Fortunately, by then I had an extremely inflamed red eye that looked hideous to the emergency room doctor. After a few liters of IV fluids, there was more concern that I might go blind and almost no concern for my back pain and diarrhea.
It was an ophthalmologist who gave me my very first dose of prednisone. I didn't take Prednisone continuously for the next 20 years but I took incredibly high doses and tapered off quickly for recurrent flares of uveitis. I had recurrent back pain too but prednisone made that disappear each time so I never complained about all the back pain I was experiencing.
I also took Prednisone for trigeminal neuralgia (TN) except the neurologist said TN wasn't treated with Prednisone. I naturally treated myself and didn't see the neurologist anymore. I treated TN with Prednisone until the facial electricity wouldn't stop. I was dehydrated and in the emergency room again. It was difficult for me to eat and drink when my face was electrified. Multiple sclerosis was ruled out after brain surgery stopped TN from happening.
https://www.webmd.com/multiple-sclerosis/ms-trigeminal-neuralgia
and
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=But%20while%20compression%20by%20a%20blood%20vessel,trigeminal%20nerve%20also%20can%20cause%20the%20condition
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I don't recall exactly when PMR was diagnosed. I just remember PMR started after I decided to throw away my entire stash of Prednisone. My cumulative dose of Prednisone was massive by then. At first when PMR symptoms started, I was told I couldn't take Prednisone anymore.
Finally, PMR was diagnosed nearly 20 years after my first dose of Prednisone, I remember thinking that PMR was a blessing to me. I was prescribed Prednisone daily for another 12 years starting out with a 40 mg dose.
Prednisone was a big part of my life for nearly 35 years. I'm happy to be off Prednisone. I think Prednisone tried to kill me a couple of times but I was saved in an ICU. Prednisone did relieve a lot of pain so my death would have been relatively painless.
Actemra has been substituted for Prednisone and I couldn't be more pleased. Not only was I able to stop Prednisone, I also stopped many medications that were treating Prednisone side effects.
I'm extremely tired of everything. However, the overwhelming fatigue was probably due to adrenal insufficiency because the fatigue isn't overwhelming anymore.