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?

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Hi, I'm Amy, and I started this webpage when I got SIRVA to help gather together information about treating it.

5 thoughts on “Guest post #1: Laura”

  1. Laura, that was a wonderfully written post and very helpful. I am scheduled for an MRI next Saturday (Oct. 1) and would REALLY like know if an ultrasound would reveal more. My SIRVA is from the flu shot on Aug. 19th and the pain is getting worse. I sure would appreciate hearing back soon.

    Found it very interesting that you experienced pain in your other shoulder as well, Laura, because I have also and felt that it couldn’t possibly be related. While it comes and goes, I can also assume it might be due to some weight lifting that I’m still able to do even on the left side if I tuck my elbow into my waist.

    Last question, anybody feel that doing physical therapy has helped. The two Physician Assistants that I’ve seen so far really don’t know what else to suggest. I’m not convinced that it would help. I pretty much do plenty of PT just by using both arms as best I can.

    Thanks for this site, Amy, I haven’t found any other sources like it. I wish it were more encouraging. Vivien

    1. Hi Vivien, you ask some good questions. Here is what I know about MRI vs. ultrasound, but it would be better if someone with actual medical knowledge can weigh in! In general an MRI has more detail than ultrasound and would be expected to be more useful for diagnosis of specific SIRVA injury, I think. Where an ultrasound really shines, though, is that you can sit there and they can take picture after picture, on the fly, and also possibly go over to your uninjured side and take some comparison pictures, and then go back to the injured side. The back and forth is very helpful for ruling out just anatomical variations.

      In both cases of the MRI and ultrasound, you rely a lot on the experience of the person reading it. I’ve read that not everyone who has a diagnostic ultrasound machine is actually all that great at interpreting it. And the same can be true for the radiologist who reads your MRI, but the most benefit of the MRI probably comes down to bringing it to your appointment with an experienced and knowledgeable orthopedist.

      Best of luck with your MRI next week,
      Amy

    2. As far as PT helping or not helping. I think there are probably many instances where it does not really help: the problem runs deeper than something that PT can get to. However, if SIRVA has caused any number of specific shoulder injuries that PT can help with, then it may bring relief! Some PTs may also do other modalities besides exercises, like dry needling, massage, or other sorts of things that could also potentially help. But I agree Vivien that both in the survey results and anecdotally, people are not seeing their problems resolve through PT. It would be amazing if PT cured it.

      There is one very important thing that good PT *may* help prevent, which is frozen shoulder. Some percentage of people with SIRVA also end up with frozen shoulder, which can be a side effect of many other types of shoulder injuries as well.

  2. Hi Vivien,
    Thanks for your nice comment. I agree with Amy’s thoughts regarding physio. I think it has helped me to improve my posture and maintain range of motion – but it hasn’t solved the underlying problem (unfortunately).

    As for the pain on the OTHER side, it’s interesting to hear that you’ve had that experience too. My doctor thought it was due to ‘crossed wiring’ – that pain signals get mixed up (either at the spinal cord or the brain) and are sent to the other arm – a sort of phantom pain. (I prefer that theory to thinking there is inflammation in my right shoulder as well!)

    If you received your your shot recently, you might have better luck with a shot of cortisone(?) There is a paper (below) that suggests this – though I find it discouraging that they are declaring ‘resolution of symptoms’ after only 1 month (given that my pain returned after 2 months).

    All the best Vivien – please keep us posted!

    Laura

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