Multiple triggers aka when the chickens come home to roost
I am 71 and was officially diagnosed in April, 2023. Reading these posts as well as research articles has been really helpful. It seems there are many potential triggers including vaccines, virus's, "medications," injuries, and stress. Ostensibly all of these, with the exception of an illness or virus contributed to my pmr. I am a realistic optimist, so I appreciate hearing the challenging stories posted on this forum, but am hopeful by addressing my triggers, as well as incorporating some innovative complimentary interventions, I can minimize the likelihood of a recurrence down the road.
Leading up to Covid, there were huge stressors in my life but the most significant one was a very serious illness of my daughter which required extensive travel for many years. We believe the worst is behind us. I own/run a business that provides 24/7 care to people with disabilities. When Covid hit, some staff quit because of fear of getting ill and finding new staff was extraordinarily difficult. Of course, I also had to keep everyone safe and healthy. Then riots occurred because of the George Floyd incident and our storefront operation was at risk. We managed to get through both Covid and the riots, but not without some extraordinary measures were put in place and then it was touch and go for quite some time. In the middle of Covid (summer 2021), my spouse, who works for me and took over some of the coverage with my clients for an extended period due to lack of staff) had to have triple-bypass surgery and his aortic valve replaced. We got through that fairly well with the help of the Cleveland Clinic. In approximately January 2021, I had a major fall while walking my dog, who pulled me forward on the snowy sidewalk, resulting in me doing an arms forward slide across the pavement, as if I was sliding headfirst into home plate. My hands, wrists, arms and shoulders were severely jammed, though I had no diagnosable injury per the ER department. In retrospect, some of the soreness I ultimately felt in my shoulders and wrists in particular, were quite similar to what I ultimately felt with the pmr. Nonetheless, I theoretically recovered from those injuries. That is until February of this year when my spouse accidentally jammed into my left arm, hand, etc in the middle of the night. It was so painful I woke up screaming.
Then there was my daughter's wedding in Spring 2022, which was a happy but very stressful event, as many weddings are. Then in the summer of 2022 and leading into the fall, my other daughter had a very difficult and troubling situation with her boyfriend which culminated in an order of protection and me having to get him out of the picture. It was a very unpleasant situation. As that evolved this past fall, I was noticing more aches and pains which I had started treating with ibuprofen. I had noticed some minor swelling here and there but assumed the ibuprophen would help with the aches and pains and minor swelling, so while I did not take a lot, I started taking it regularly, which I had never done before. In fact, I never had taken any pain medication before this except rarely for something related to dental work. As the aches and pains continued (and my son's wedding was coming up in 2023), when I saw some advertising for an amino acid supplement that stimulated growth hormone and then saw it at a big box store, I decided to give it a try. Perhaps that would perk me up. That was mid-November. After the first of the year, I had an acute reaction in my arms where they swelled up and felt like bricks. There was no pain per se but I could not get up without tremendous effort. I quit the supplement and the acute swelling went away, but I still noticed soreness in my wrists and hands, as well as my knees, and the random aches and pains here and there. So I continued with an occasional ibuprophen, thinking it would help. Not so sure it did.
In late February, we decided to take a trip to the southeast coast. I thought I just needed some R&R and would be back to normal. But while there, I had decided I would also take whatever amount of ibuprophen I needed "to enjoy" myself. So for a couple days, I took the max allowed as we wanted to do things. That is when everything hit me. I could not function. I could not sleep, get up. Everything hurt. I would dig my arms into door frames to try to get them to feel better. My spouse was up all night long helping me adjust my body, digging into my arms to try to make the pain go away. I tried some of his baby aspirin. It made things worse.
We we home early. On the plane, it got even worse. I could not get up. He had to drag me out of that seat. As we exited, I could hardly move my legs. He asked if I wanted an wheelchair. I said no because I knew I needed to walk. When we got home and I saw my legs from just above the knees down, they were about double their normal size.
While I had no intention of ever taking ibuprophen again, I thought perhaps I could try and aspirin again. I had another clear reaction where my legs swelled up. In the meantime, I could not sleep because no position was comfortable and as soon as I got adjusted (with my spouse's help) I wanted to move, but couldn't as no part of my upper body would work. At it's worst, I said if someone asked me if I wanted to cut off my arms, I would have to consider it.
He wanted to get me a porta potty but I said I needed to walk so somehow I got myself up and only through the grace of God did I make it back and forth, though I could only squat when I got there.
My PCP did some bloodwork including crp, guessed PMR was a possibility and I was able to see a rheumatologist the next week. I clearly have PMR, probably triggered by the stress, the supplement and the nsaids. He also acknowledged my three covid vaccines could also have set up an inflammatory reaction which primed me for all this. Incidentally, a a few months after my last booster, I had a very small experience with singles. It wasn't much of anything but the correlation is interesting.
I am now on 9 mg prednisone, down from 10. I am using everything complementary I have at my disposal as I want to get past this. Because of my daughter's health issues, we happen to own both an HBOT chamber as well as a pemf mat. I use both of them extensively. I think they help. I will never use a nsaid again.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Hello @freeme, Welcome to Connect. It's good that you are advocating for your health and learning as much as you can about PMR. You are definitely not alone in your journey. I've had 2 occurrences of PMR but fortunately it has been in remission for the past 4+ years. I think you might find the following discussion helpful if you haven't already seen it:
— PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.
What helped me when I was tapering off of prednisone was keeping a daily log with my prednisone dose for the day along with the amount of pain I had when I first got up in the morning. Do you keep a daily log for your pain and dosage?
I have GCA, not PMR, but I feel there are certain commonalities in our reaction and our effort to manage an existing disease…that is the way I look at it. The autoimmune disease is a tough boss and will go when it is darn good and ready. The most we can do it manage it the best we can.
When I came home today from a four-hour art class, I slept for five hours. That was mainly because Monday and Tuesday of this week were non-top. The different stressors you have been under make my week look like a cakewalk. My Lord, you have been under a ton of stress for a long time!! Good happy stress, like trying to vacation, wears on you just like the stress of worrying about one of our children.
Are you happy with your rheumatologist? How often do you see him/her? When I was reading your post, I was waiting…" then I had a stomach bleed''. You took enough Ibuprofen and aspirin to cause one. How about Tylenol?
I'm hoping there is a course of treatment that will relieve you!!💞
I started logging 3 times per day for seven areas that had some pain, stiffness or swelling per each side about 1.5 days after I started the prednisone. I noticed some immediate improvement and had started writing notes but quickly realized that was inefficient. So I switched to a 10 point system but used 10 as the best score compared to how I was before this started. I started the prednisone at 4:30 as that is when I got it and chose 8 pm as that was when I could tell it fully kicked in, 8 am as mornings are imp and 3 pm as wanted to monitor how I felt as the prednisone ended its half- lifes in my system.
Thank you for the reply. One of my New Year’s goals this year was to spend a bit more time with friends and/or otherwise connect. PMR put a damper on that but this forum is a good substitute. This is my first time participating in something like this. The pmr was so horrible at its worst that I have a little ptsd perhaps so talking with others is good. I only shared the highlights of the stressors haha and fortunately I never had anxiety or anything like that but when pmr hit my response was that my body was really mad at me. I once told my husband I I really wasn’t the energizer bunny. Well even if I was, the energizer’s bunny’s battery has died., at least for now. Take care, get rest and nurture yourself without guilt. Best to everyone.
Rheumatologist, have seen him twice and going back in a month. Can contact him via on-line system anytime and her responds immediately. Yes I like him. He wanted to start at 15 mg. We negotiated to 10. Me pcp is also on this and I will probably do some extra testing thru her to explore if there is anything more from a functional medicine perspective we should know about etc.
I can truly relate to what you say. When I was diagnosed back in 2019, I was in the dark in more ways than one. It was a blessing to be part of a group. The knowledge you gain is great, the support essential, and ultimately learning that it gets better by listening to the stories of others. Gosh, I'd never heard of these diseases.
The last line of your response is the best advice anyone could receive~! When you progress to the point where you have a 'pocket' of energy….spend it on something that you really love to do.
This past weekend was an exciting day for me….. My first shower standing up in three years!!! Felt great and much less cumbersome. That light shines bright at the end of the tunnel.💞
U go girl!
As I was being worked up by my pcp in April, leading up to my dx, we discovered my B12 was in the very low normal range. Low B12 is associated with stress and can show up as pain. My worse pain was in my upper arms and the pain and soreness definitely got better in the arm where I got the injections. I still needed prednisone for rest of symptoms. What was your B12 status? Do you know?
Hello @freeme, You will notice that we moved your post to your previous discussion you started below so that members following the discussion will see your update that you discovered your B12 was in the very low normal range and is associated with stress that can show up as pain.
— Multiple triggers aka when the chickens come home to roost: https://connect.mayoclinic.org/discussion/multiple-triggers-aka-when-the-chickens-come-home-to-roost/