Does anyone have any experience with Shoulder Injury Relating to Vaccine Administration (SIRVA)?

chiarieds

Hi @hEDS_hil - Thank you for your feedback on the yellow card scheme, that's really helpful (even if it's not too specific!) I've had the 'rare' comment about EDS too, so am with you there. My best wishes for raising awareness of SIRVA from your survey.

corrie59

Hi all, update on my shoulder pain after covid 19 vaccine on 5 th feb
SIRVA identified,  still having steroid and hydrodilation injections , next phase physio then surgery , very slow process ..

hEDS_hil

Hi everyone, there are lots of stories of people's own experience of SIRVA in this forum which are similar to mine. I've had SIRVA since April and have seen various doctors who have never heard of it and dismissed my concerns that my pain could possibly be linked to my vaccination. Even when I've shown them scientific papers about SIRVA they have told me that there isn't a link between vaccination and shoulder pain. I feel so frustrated that a condition which is recognised in other countries seems to not be acknowledged here.

I thought it would be good collect information about our experiences in one place, in order to give a voice to people who feel they are not being heard. I have put together a survey open to anyone who lives in the UK and thinks they have SIRVA. The results will be shared with health professionals and others in order to (i) raise awareness of SIRVA, (ii) to highlight the impact of SIRVA (both to individuals and the NHS) and (iii) hopefully to bring about changes to the training of those administering vaccines in order to prevent future cases of SIRVA.

If you would like to complete this survey to share your experience you can find the link to the survey is on the 'News and Opportunities' section of Scope's website, or type 'sirva survey' into the search box and you should see it. The survey should take about 5 minutes and the answers are anonymous.

Please note - this survey is posted on a Facebook page (mentioned by @AmyS1992) as well as the Scope website. Please only complete it once.

Thanks.

corrie59

I finally found a fantastic Dr who listened and didn’t fob me off with a frozen shoulder, he mentioned an influx of patients with exactly the same symptoms, and trying to plan a fast track route for these individuals. Sadly little is known how to resolve this problem but he’s trying various routes until possible surgery .

corrie59

Form completed x

hEDS_hil

Wow @corrie59 ! Lucky you to have found a Dr who listened and believed you!

It would be great to think that there are some doctors in the UK who might be open to trying new things to treat this condition. There is a doctor called Dr Marko Bodor, in the US (who was the first person to write about SIRVA back in 2007) and he is developing a method to treat SIRVA. I recently went on a zoom call with him where he talked about the latest developments. He treated patients who'd had SIRVA for many months and their symptoms cleared up within 48 hours. The talk is available on youtube - if you search for 'sirva q&a'  .

I wonder if the fantastic Dr you have seen might be interested to hear about it? Please do pass this info onto him if you think he'd find it useful. It would be amazing if Dr Bodor's treatment method became available in the UK.

chiarieds

Hi @hEDS_hil - & thank you. I've just listened to Dr Bodor. Quite amazing, & his technique really makes sense. Here's the link for anyone else interested: 

https://www.youtube.com/watch?v=flfN_1ZwL6w

corrie59

heds-hil thank you … will pass on x

hEDS_hil

Thanks @chiarieds - I think that is the video where he describes what SIRVA is - it is certainly a clear explanation of how and why this injury can happen.

The link to the Q&A session, on 20th October 2021, with Dr Bodor where he talks about his new treatment for SIRVA is below (the talk was hosted by a US lawyer who specialises in SIRVA claims - but the legal aspects are not discussed in this video) .....


https://www.youtube.com/watch?v=VaHaCaS3IK0&t=574s

chiarieds

Thank you @hEDS_hil - I found them afterwards! I'm halfway through Part 2 of the Q & A now; very interesting.

corrie59

https://metro.co.uk/2021/11/14/sirva-people-left-in-agony-and-unable-to-move-arm-after-covid-vaccine-15486427/?ito=article.tablet.share.top.email

hEDS_hil

Hi everyone,

Update about SIRVA survey

First of all a huge "Thank You" to everyone who has filled in the SIRVA survey I posted a couple of weeks ago. It was also posted in a Facebook Sirva support group and I've had over 100 responses in total so far which is fantastic.

Secondly - I'm going to stop collecting answers at the weekend, so if you are thinking about taking part, but haven't got round to it yet, then please have a look at it. There are 21 questions, mostly ticking boxes, and it only takes a few minutes to complete. It is anonymous as I don't ask for any personal info.

Here is the link to the page where you can see further information and you can take part if you are interested
https://forum.scope.org.uk/discussion/85996/sirva-survey?_ga=2.39181027.1192378490.1638373697-1826372330.1630225957

chiarieds

I'm pleased your survey has been so successful @hEDS_hil - hopefully you will be able to spread more awareness of SIRVA.

corrie59

Glad we are being listened too x

smiffy333

Good to find that I'm not the only one with this problem. 

Never did go to GP as wife needs care 24/7 so thought it would heal by itself. 

Still painful but not as bad as it was. 

DGT

Hi all,

I'm suffering from the same problem; I had the 2nd jab in June, there was pain on the injection site right after, and then it got progressively worse and I now only have about half normal mobility in my left arm (I can raise it to about a 10 o'clock position) but worst of all I have had seriously interupted sleep since then, the pain from inflammation wakes me every night around 2pm. The best description is it's like a toothache that blows up only at night. Every. Single. Night.

Here's the kicker; my doctor and the physios they have appointed to sort me out, all refuse to accept the injury is SIRVA and related to the Covid vaccine. They said its just age and work related, (I lift heavy boxes around some of the time) even though I stopped the lifting before it got bad, and I'd been doing this sort of lifting for many years with no problem...  The treatment I've had is next to nothing "Do these exercises and good luck.." I could have got that sort info via a google search and any one of hundreds of youtube physio videos, without waiting weeks to be referred to a physio, who doesn't even touch your injured area, so is basically guessing, for that pearl of wisdom. 

I know of a few friends and aqaintences that have stiff shoulders after the vaccine, so how many people is this affecting? I'm almost 5 months in now and completely fed up with it. It's slowly getting better but my sleep is still terrible and of course this affects my life. I'm seeing the specialist next week, so I hope it gets sorted soon.

Covid jabs have been included on the vaccine damage compensation scheme on the GOV website, so they know it exists, but the criterior to apply needs medical confirmation, and if doctors are not recognising it, then no dice there... Why is it being ignored?

here's the link to the Gov compensation page.

https://www.gov.uk/vaccine-damage-payment/eligibility

jsimpson7

It is being ignored because the Gov do not want to deter people from getting boosters!

DGT

jsimpson7 said:

It is being ignored because the Gov do not want to deter people from getting boosters!

Yes. This is my suspicion too.

kelly2103

I am so glad I found this post. I am almost at 5 months since my 2nd moderna vaccine and have been in agony with my shoulder/upper arm since. I have limited movement in that arm now and am finding it difficult to dress myself, wash my hair, reverse my car etc. Basically anything that involves raising my arm slightly. Even sleeping on it hurts. I've been to my Dr's twice now, both times they have told me it's a coincidence with the timing and I have a shoulder injury called rotator cuff. I know this isn't true. I had no pain at all before my 2nd vaccine, I reacted badly to begin with getting a huge red lump for several weeks and was left with the pain and limited movement. Does anyone have any advice as starting to worry now that this will last indefinitely! 

DGT

kelly2103 said:

I am so glad I found this post. I am almost at 5 months since my 2nd moderna vaccine and have been in agony with my shoulder/upper arm since. I have limited movement in that arm now and am finding it difficult to dress myself, wash my hair, reverse my car etc. Basically anything that involves raising my arm slightly. Even sleeping on it hurts. I've been to my Dr's twice now, both times they have told me it's a coincidence with the timing and I have a shoulder injury called rotator cuff. I know this isn't true. I had no pain at all before my 2nd vaccine, I reacted badly to begin with getting a huge red lump for several weeks and was left with the pain and limited movement. Does anyone have any advice as starting to worry now that this will last indefinitely! 

You need to go back to the doctor and push them harder for a physio referral. Tell them what you have said above, that should be enough. Don't push the vaccine as the cause, they can't do anything about why it happened anyway, (and its not something they can get into as its bad news for more vaccine rollouts) just say you need a proper diagnosis with a specialist. The criteria is if the pain stops you from sleeping and working, then they step it up quickly. TBH, NHS physio is not very good, they don't even out their hands on the injury. If you can, find a private one that specialises in sports injuries and see them at least once for a professional opinion.  It will get better slowly, but you need guidance with execises ect, so get back to the doctors and inisist you get sometreatment.