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

Amberholly

Thanks for your quick response! Yes I’ve heard of sirva. Some nurses have told me it’s sirva some have told me it’s an adverse reaction as I have an auto immune disease. I’m seeing another doctor next week. I have seen 3 doctors and they all tell me it’s either a reaction or been administered wrong. The first doctor said the needle placement was correct. I just want to live my life again without pain. It’s frustrating. I hope your wife feels better soon. I have also contacted a lawyer in relation to this. 

AmyS1992

Amberholly said:

Thanks for your quick response! Yes I’ve heard of sirva. Some nurses have told me it’s sirva some have told me it’s an adverse reaction as I have an auto immune disease. I’m seeing another doctor next week. I have seen 3 doctors and they all tell me it’s either a reaction or been administered wrong. The first doctor said the needle placement was correct. I just want to live my life again without pain. It’s frustrating. I hope your wife feels better soon. I have also contacted a lawyer in relation to this. 

Hi @Amberholly - so sorry you are suffering too. I'm in the same boat - I do have a SIRVA diagnosis now which feels like a massive step forward. However I've since been told by a physiotherapist that it is more likely to be a rare reaction caused by my underlying autoimmune diseases. I've been told by 2 physios now the needle placement was too high and by a further that it was fine, all very confusing! I hope you get some answers and the pain starts to ease soon.

Amberholly

Hi @AmyS1992 my doctor thinks it’s sirva but some nurses think it’s a reaction due to my auto imunne disease. Have you heard parsonage turner syndrome or brachial neuritis? Could be these too? That’s no good at all! How long have you been in pain and have you had cortisone injections? Do you have an auto immune disease? 

AmyS1992

Hi - just thought I'd come back and update.

I now do have a SIRVA diagnosis, it took a lot of pushing unfortunately but got there eventually. My GP is still adamant the 2 are unrelated but 3 different physios have now advised they see people with SIRVA regularly, especially after flu jab programmes. Diagnosis reads: "submacriobal shoulder impingement following vaccine administration (SIRVA)".

I'm not sure when it changed but Shoulder Injury Relating to Vaccine Administration has now been added as an option to the drop down menu on the Yellow Card scheme. Previously it wasn't an option and you had to add it as a note which led to the reports not being grouped if people had worded it slightly differently or abbreviated it to SIRVA. 

Hope everyone suffering has found something that helps reduce the pain. 

AmyS1992

@Amberholly I have heard of Parsonage Turner syndrome but will admit I don't know any details and haven't heard of brachial neuritis sorry - will have a quick research now. I do yes, I have 3. I have been offered cortisone injections but I'm also very wary to take one as I have Type 1 Diabetes and it can wreak havoc with it! Surgery has been discussed and I just really don't know what to do any more. I've been in pain since the first Covid vaccine which was early March, so coming up to 8 months now. Like you I've had differing opinions - unfortunately I think it has been difficult for a lot of us to be taken seriously because it's a relatively rare and new phenomena and there isn't a lot of research yet. I hope you get some answers and relief soon

chiarieds

Hi to you both @Amberholly & @AmyS1992 - I'm sorry for what you're both suffering. I can identify with what Amy has said, that physios may likely have seen people with SIRVA following misadministration of any vaccine. You might not only hear terms such as 'subacromial impingement syndrome,' but also 'subacromial/subdeltoid bursitis,' or 'rotator cuff injury.' They all identify that there's been an unfortunate injury to your shoulder.

I hope you'll bear with me, as I repeat posts I've given above in case you haven't seen them. This so reminded of 'frozen shoulders,' which the subsequent scarce medical literature has borne out, & I've nearly treated more of these than I've had hot dinners. Hopefully if you're getting physio, then initially it will be something like this....

I'm a long-retired physiotherapist, & have been recommending for people to try at home this gentle exercise, which may tide you over until you (hopefully) get appropriate treatment, which may well include physio:

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.

It's good to read that SIRVA is now an option in the Yellow card scheme, Amy; hopefully this will lead to even better understanding in the future after such a massive vaccination programme.

LancsRose

LancsRose said:

LancsRose said:

Hi guys, I received my first dose of Pfizer end of March and from the moment the volunteer injected me I felt discomfort and pain. I just knew something had gone wrong. This was followed by bruising and pain around the injection site. The bruising and pain lasted for about two weeks, so the emergency 111 doctor gave me a 10-day course of antibiotics (this was a telephone triage).  The pain was still constant, not being able to sleep as in so much pain and discomfort. After finishing the antibiotics and the pain remaining, and appearing to be more prominent my GP prescribed Nanoproxen (2 Week course) again telephone triage. This appeared to have no effect in relieving the pain and again I went back to my GP quite distressed that my arm was still causing incredible pain despite pain killers not providing any pain relief. This time another GP spoke to me on the telephone and said that he wanted to examine me at the surgery. He said on seeing my arm, that the person who had administered the vaccine had gone into the nerve and damaged it, prescribing me Neurontin which is something that can help with nerve pain. He was shocked at the fact there was no muscle on the affected arm, comparing it with the other arm. I am now on Neurontin day 2 and I can honestly say I am feeling no pain relief yet. In fact, the pain appears to be more intense and I  am feeling pain in my legs, tingling in my hands and feet. I have been told to take Neurontin for 2 weeks and if that doesn't work to go back and they will try something else. During this time I did have the 2nd dose of the vaccine (in the other arm) and thank God that is fine. I am unable to sleep at night without crying out in pain, unable to get comfortable, and am praying that the Neurontin will work. If not, I will insist on an x-ray or MRI as I am unable to bear this. Really good to be able to share with people who have gone through this too... after over 2 and a half months I really need some solution to end this... 

goldeb

Hi, I`ve just found this group and i am so glad that people are talking about this problem. It is well recognised in USA but here in UK the medical profession seem reluctant to accept it`s existence. As a retired Physio i have enough knowledge to realise that the symptoms i had following a flu jab last December at my GP practice were due to incompetent injection technique but my GP insisted it was impossible to prove despite the fact that an Ultrasound scan (private ) confirmed a bursitis and a guided cortisone injection helping (also private).
Unfortunately nearly 10 months later i still have pain when i use the arm or lie on it . i am awaiting an MRI which i insisted on because i am worried about long term problems. 
I initially had no intention of making a claim for this but the fact that nobody seems to care that people are suffering really concerns and upsets me. let`s face it , this is not a side effect of vaccination it is due to INCOMPETENCE . All i really want is for my GP to accept this and apologise but i doubt that will ever happen.

janer1967

Hi and welcome to the community 

This topic has been discussed many times on here which I hope you can see 

Amberholly

@LancsRose did you know brachial neuritis and turner parsonage syndrome are sometimes misdiagnosed as sirva? 

Amberholly

@AmyS1992 Hi Amy, thanks for writing back. My doctor diagnosed me with Sirva but now is saying it could be parsonage Turner syndrome. What do you take for pain relief it’s been 6 weeks of pain for me. Booked in for cortisone injections x

Roomonbroom

Hi I too have experienced relentless severe pain in arm and should almost immediately after having my 2nd AZ jab on the 5 th May . There have been times when I wanted to chop my arm off ! my doctor told me it was rotator cuff/ frozen shoulder and was just a coincidence that it happened straight after my 2nd COVID jab .I was given anti inflammatory drug but   they did not help and was told I would have to wait for a appointment  with the muskler skeletor  team as doctors did not deal with it .
Seriously this was a complete joke my first appointment was on 12 th august almost 3 month after pain started and that was just a telephone appointment , the next was 3 weeks later a video call just to be told the same thing , I was told I would receive exercises by email and maybe could have cortisone injection , I never received any exercises at all . I complained to my doctors that they would not leave an animal in so much pain . 

I received another appointment with the muskler skeletor team 4 weeks later where was put forward for an X-ray and cortisone injection  , I have finally had the cortisone injection 3 weeks ago , the physio told me it was Sirva and they were dealing with a large number of patients who had suffered this on vaccination of covid jabs .The injection has helped with the pain , I was told to book a Physio  appointment for 2weeks later but one wasn't available until end of November , that tells me the scale of this problem .
iv since had an ultra sound which my doctor requested although I don't have the results yet , I still have only 40 % movement , dressing myself is very difficult cannot do my own hair etc luckily I do not drive as I would not have been able to .
iv never had any problems of this kind whatsoever in the past and feel it was down to the person who vaccinated me , it was in fact done at my surgery by a man in a medical uniform who was rather rude and inpatient with me when I explained  that I didn't really want this jab but felt I had too . He stood in front of me ,not moving to my side but administered the jab in my left side , it wasn't until after I thought it was strange position . I actually feel we should be compensated for this , I have carried on working throughout this as I'm self employed but it has been agony and sleep deprivation terrible ,I feel so sorry for people who  are in employment and could not work and may have lost jobs through no fault of there own .
All in all I feel let down , I won't be having the booster until this problem resolves and to be honest I'm not sure I go go through this again .
I hope all you people get the help and treatment quickly and get well soon .

Roomonbroom

Apologies for any spelling /grammar mistakes in my previous post , it was 3 am when I wrote it as once again the pain was keeping me awake .

Chrissy9

Hi, I have had pain and reduced mobility in my upper arm/shoulder since my first vaccination in March. I have constant niggling pain in my upper arm and can’t reach behind to undo clothing or press forward to push a heavy door open without experiencing excruciating pain. I tried to get an appointment with my GP in August but could only get a face to face appointment with the nurse practitioner ( I suspect I only got to see her because I was complaining I had left arm pain!)  She suggested it was muscular and prescribed Ibuprofen and some exercises but I am still in pain now and wake several times during the night due to the pain. I have always thought the problem was due to how the vaccine was administered as I felt the pain immediately after the jab, unlike previous flu jabs. Google searches flagged up info on American sites relating to SIRVA but until today I hadn’t found anything relating to the UK.  I will definitely be contacting my GP again with this new found information!  I might add I had my second vaccine in the same arm with no problems and will be having my booster in a few weeks. I don’t believe the vaccine has caused the problem, but it seems the way it was administered has. 

AmyS1992

@hEDS_hil - welcome and sorry that you're in pain! If you're able to and have a Facebook account it may be worth joining (search for Vaccine administration injury SIRVA support UK) and sharing the link there? I imagine plenty will be happy to fill it out.

@chiarieds thank you for your helpful advice as always!

Ross_Alumni

hEDS_hil said:

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

Ah sorry to hear this, I have resent the email to the address provided on your profile, so hopefully it comes through.

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 .