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SIRVA survey

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  • hEDS_hil
    hEDS_hil Member Posts: 6 Listener
    edited November 14
    Hi everyone,
    My story sounds similar to lots of you. I've had horrendous shoulder pain since my 2nd covid jab in April - been diagnosed with frozen shoulder, bursitis and tendonitis. Can't sleep, can't drive - so can't get to work and am fed up with doctors saying it's nothing to do with how the jab was given. I also have hEDS so have to deal with chronic pain and chronic fatigue on a daily basis so having SIRVA on top of this has made life really hard.

    I used to work for the NHS doing research, so I thought I'd try to do something positive with my time stuck at home. I'm trying to collect some info about other people's experiences of SIRVA to show, that while it maybe rare, there are lots of cases in the UK. If you live in the UK and think you have SIRVA please will you answer a few questions here:

    https://forms.gle/nrcyj5dvJwcjgzeq8 

    It should take less than 5 minutes and answers are anonymous. I hope to use the results to raise awareness of SIRVA among health professionals and bring about changes to the training of those administering vaccines in order to prevent future cases of SIRVA, and to save others from going through this painful experience. Thank you.

    By the way, if anyone wants to show their doctor proper scientific / academic papers about SIRVA you could recommend they look at the National Library of Medicine website and search for "SIRVA" - here is the link.... https://pubmed.ncbi.nlm.nih.gov/?term=sirva

    I'm not at all anti-vax, just anti-SIRVA!
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,997 Disability Gamechanger
    Hi @hEDS_hil - & welcome to the community. I also have hEDS + neurological problems, & have had 2 partially frozen shoulders (& a partial tear of my supraspinatus tendon), which, as you've unfortunately found out, can occur with SIRVA.
    First, may I mention that Scope prefers to check any surveys first. I'm sure yours will be fine as you're not collecting personal information like names/email addresses, as seen on the first page of your survey. It will also need moving to Scope's 'News & Opportunities' category where links to surveys are posted.
    Secondly, another member mentioned that SIRVA is now recognised with the yellow card system relating to Coronavirus vaccines, so, if you haven't done so, please report this, as it seems data is already being collected by the MHRA. Please see: https://coronavirus-yellowcard.mhra.gov.uk/  As I can't access this (without reporting), it would be great if you could confirm whether or not SIRVA is indeed mentioned, thank you.
    I'm a long retired physio, but have also had to engage in medical research (to ascertain my family was affected by hEDS for a start, which was later confirmed). It does seem from the available medical literature that SIRVA is recognised, altho usually said to be rare, as you mentioned, from previous studies following maladministration of other vaccines.
    Thirdly, having treated rather a lot of frozen shoulders as a physio student, as well as finding this helped myself following a shoulder injury, etc., I recommended this exercise some months ago on this thread, which you may also find helpful:
    ''Try this as a first gentle exercise. Stand & put the foot of your unaffected side slightly forwards so you have a comfortable base. Lean forwards, letting your affected arm hang. Now swing your arm backwards & forwards within your pain-free arc. Do this gently for a couple of minutes. Next try moving your hand in a comfortable circle first one way, then the other. Gravity thus helps aid movement, & you can increase the range as you progress, always moving your shoulder within your pain-free arc. Don't push through the pain as this just increases the pain cycle. Try this a little & often throughout your day.''
  • Ross_Scope
    Ross_Scope Posts: 5,377

    Scope community team

    Hi @hEDS_hil

    Welcome to the community, it's good to see you join us. 

    Thank you for posting your survey link, I certainly think it is important for SIRVA to become more widely known so fingers crossed you can achieve your goal of spreading awareness. 

    Before we allow your survey link on the community, please would you be able to fill out the attached form and return it to [email protected]
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • Ross_Scope
    Ross_Scope Posts: 5,377

    Scope community team

    Hi @hEDS_hil

    Welcome to the community, it's good to see you join us. 

    Thank you for posting your survey link, I certainly think it is important for SIRVA to become more widely known so fingers crossed you can achieve your goal of spreading awareness. 

    Before we allow your survey link on the community, please would you be able to fill out the form I have emailed you and return it to [email protected]
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
  • hEDS_hil
    hEDS_hil Member Posts: 6 Listener
    Hi @Ross_Scope
    Thanks for your reply. I'd be happy to fill out a form - but I haven't received an email from you (its not even in my spam folder!) Please could you re-send it? Thanks

  • hEDS_hil
    hEDS_hil Member Posts: 6 Listener
    Hi @chiarieds ,
    Thanks for your reply and suggestions for exercises to try. I've had SIRVA since April and have my first NHS physio session booked on 23rd November!

    Thanks too for your comments about the survey - I've had a message from @Ross_Scope , so am hoping once I have filled in the relevant form that the link to it will appear.

    Yes, I've reported my shoulder injury to the Yellow Card scheme. The latest Yellow Card reports for Covid vaccines (up to October 2021) shows:
    213 reports definitely related to the shoulder (they include the word "shoulder")
    306 reports possibly related to the shoulder (these are listed as "vaccine site joint" issues and the shoulder is the nearest joint to the vaccine site)
    3,334 reports which maybe related to the shoulder (terms such as bursitis and tendonitis are used, which are common in SIRVA - but unfortunately it doesn't say which bursa or tendons are involved)
    so it looks like hundreds of people have been affected by this.

    I was told by one doctor that SIRVA is very rare so it is very unlikely that I could have it - but having spent years trying to get a diagnosis for a "rare" disease of EDS, I know that just because something is rare, it doesn't mean you can't have it!!!!   :)
  • Ross_Scope
    Ross_Scope Posts: 5,377

    Scope community team

    The above post has been moderated and checked by the Scope Community Team. 
    Posts on the news and opportunities is the only board that permits the publishing of an email, contact number or survey link. 

    Our website contains links to third parties’ websites for your information only. We have no control over the content of those sites or resources and we don’t endorse or accept liability for the content of them.

    Read the full Terms and Conditions and the Community Guidelines

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