Guest post #1: Laura

Hello everyone; I hope you are doing okay during this particularly difficult time. I am guessing that for some folks COVID-19 has interfered with getting treatment for your shoulders, and I’m also sure that all the discussion about a coronavirus vaccine is causing us some anxiety. We don’t know much about how folks with a prior Shoulder Injury Related to Vaccine Administration (SIRVA) react to future vaccines that are administered correctly, but in Laura’s story below, you will read about her experience.

I’m inviting anyone who is at least a few years into their SIRVA experience to please contact me if you would like to post your story. My story is in a long, drawn-out equilibrium; better, but not all the way better. Since that’s boring to talk about, I would like to continue to post with your stories and experiences in the hopes that it will help others with similar symptoms. The first “guest post” is by Laura. Thank you, Laura!

-Amy

Hello! I am adding my SIRVA story to Amy’s with the hope that it will be helpful to others out there who are hungry for information or (at the very least), reassurance that you are not alone.

I am a healthy, active 60 year old woman who had a shingles (Shingrix) vaccination in my left arm in August 2018. The pharmacist who delivered the shot noted that I am slim and used a shorter (5/8”) needle. I’m pretty sure I rolled my sleeve up (rather than down from the neck) and the injection itself didn’t hurt.

The expected fatigue and left arm pain showed up the next day (Shingrix is known for significant arm pain that should last a couple of days). Though the fatigue quickly resolved, the achy arm did not. Two weeks later, it had spread to my elbow, wrist and hand. During that time, I turned to Google and (of course!) landed on the many articles posted by law firms with the title VACCINATION INJURY. I recall reading about SIRVA but, as I didn’t feel the needle itself had injured me, I (mistakenly) didn’t think it fit my situation. My focus, at that time, was more on conditions such as brachial neuritis and Parsonage Turner Syndrome. When I reported the persistent pain to my pharmacist, she informed me (rather bluntly) that vaccinations can trigger autoimmune diseases such as rheumatoid arthritis (RA). Needless to say, this fueled anxiety!

By week 3, I had stiffness and tingling in both hands and similar (but less) pain in my right arm. I went to my doctor who prescribed a week of heavy-duty ibuprofen and ordered blood work and a nerve conduction study. The ibuprofen did nothing and both tests yielded normal results (no markers for RA nor elevation of C-Reactive Protein). She guessed that my immunity to shingles was already robust and that my system over reacted. (Side note, I had a mild case of shingles 12 years ago). She predicted my symptoms would resolve in a few weeks or months.

But they didn’t. And my anxiety ramped up which, of course, made things worse. By month 5, I had an ultrasound and X-ray on my left shoulder and elbow which showed subacromial/subdeltoid bursitis, subscapularis partial-thickness tear and supraspinatus tendinosis and thickness tear. My doctor did not necessarily think these results were connected to the vaccination and suggested physio. I did a relatively short run of Active Release and Graston (two types of physiotherapy), also, acupuncture and massage – but with no results. I feel better when exercising and have made a point of continuing with my usual activities such as brisk walks, yoga, ice hockey and badminton – luckily, I am right handed so the pain doesn’t interfere too much. Though my arm can feel a little worse the day after yoga, I think it has helped me to maintain strength and range of motion – though I’m never entirely sure that I’m not causing more damage nor preventing it from healing. (I’d love to have a clone of myself doing complete rest while I continue with activity so I can know which path is better!)

By month 6, I was delving into the fascinating world of Mind/Body pain theory and mechanisms of ‘central sensitization’ (Lorimer Moseley, David Butler, Dr. Sarno and many others). I became convinced….almost….that I had no actual tissue damage and that fear and anxiety of vaccine injury had sent my nervous system into overdrive causing my brain to transmit errant pain signals. In particular, I have been interested to read about the role of the immune system (specifically glial cells) in chronic pain conditions such as fibromyalgia and wondered if there was a link with the vaccine. I tried meditating, journaling and Qi Jong with hopes of calming my system.

One year in, things were pretty much the same. While I felt much calmer, my pain persisted and I had to concede that I couldn’t quite shake the belief that the vaccination has caused an insidious and undetectable immune response that was wreaking havoc on my tendons! Which brought me back to SIRVA. Discovering Amy’s excellent website and reading more about the nature of vaccine induced injuries has convinced me that this IS what I’m dealing with.

And then, by month 15 my symptoms finally seemed to ease and, taking a great (and foolish!) leap of faith, I got a flu shot (definitely with a short needle and in the right place). The arm pain re-emerged the following day and, within a week, it again had spread to my shoulder, elbow, and wrist…(damn!).

Regarding the issue of SIRVA being caused by misplaced needles, Dr. Sofia Szari, co-author of this paper, has this to say: “in my case that was published I believed [the needle was injected in] the proper location based on the description.  I can’t fully explain why it happens in those circumstances other than that the local immune response is robust and for some reason the immune cells in the nearby shoulder get revved up as well to fight off the ‘foreign invader’ of the vaccine, but in their inflamed state, the shoulder is the innocent bystander.”

So, armed with papers recommended by Amy, I visited my doctor again. She is somewhat skeptical about SIRVA but ordered a second ultrasound which revealed bursitis (the rotator cuff tears looked better). In January 2020 (about 18 months post-vaccination), I received a shot of cortisone into the bursa which gave me two glorious pain-free months. I also experienced a weird ongoing sense of jitteriness kind of like an adrenaline rush –  which wasn’t pleasant. In any case, the pain came back, almost as quickly as it went away (i.e. overnight). I doubt I’ll get another.

Since then, things are about the same or a little worse. I seem to be experiencing more muscle pain and general shoulder tightness which is now particularly bad in the neck. I’m assuming it’s compensatory but it may be that I’ve been overdoing things. I’ve also resumed physio which has helped with some of the muscle tightness but it’s not making a whole lot of difference to that deep shoulder pain – which is so exasperating.

Two years in, I am now (like so many) wondering where to turn next? It seems clear that SIRVA is different from ‘normal’ injuries in that there is an ongoing inflammatory response at play. My #1 question is – is the inflammation (and resulting tissue damage) progressive, or will it diminish with time?