Flu Shot & Long Term Unwellness

[AsheleyGreen]

Greetings everyone, I know this is a touchy subject to some - but I was just wondering if anyone else out there has perhaps experienced what I have. I was diagnosed with Fibro about 5 years ago, after making literally dozens of trips over the years to all GP's in my surgery complaining about major fatigue and pain. Sadly, things have not improved. One thing I did realise-albeit very late in the game - was that I have been very unwell since I had my first flu shot 7 years ago. (and have since had annual shots) that my GP suggested after having a very nasty bout of flu 2 years on the run. I know this could be completely coincidental - and I am by no means what they call an "anti vaxxer" these days, but I went from an active 50 year old to someone who just feels so unwell and in pain and fatigued most of the time. I have tried researching this and so far there are very few articles positing this theory. Many thanks

[Fibroska]

Hi Asheley, I couldn't say if the flu vaccine has any bearing on your Fibromyalgia or not I'm afraid. I really wanted to let you know that you are not alone.

The symptoms of Fibromyalgia are so varied and unpredictable, I have found that this past four to six weeks have been the worst I have suffered in quite some time, pain, sensations, fatigue, off the scale; I have came to the conclusion that it is the unavoidable stress which has caused this spike, as I am not doing anything different.

Try and keep yourself distracted, pace what you are doing, do something you really enjoy daily; guided meditation and simple movement exercises are good too. Remember, like the situation we are all in, this flare is temporary, you will get through it.

Hopefully the sun is shinning in your window as it is mine and you get peace from pain soon.

Stay safe, keep well and be strong.

Remember and be kind to yourself.

[AsheleyGreen in reply to Fibroska]

Hi there, I'm not sure either but it was just a thought I had had after thinking of the time line. I agree with you completely, as my symptoms have been particularly bad of late. I have tried the distraction method and it has worked to a degree. Kindest regards to you and try to stay well. xx

[Hazel_Angelstar Administrator FMA UK Staff]

Most people can identify some form of trigger or trauma which started their fibromyalgia symptoms.

If there was no other physical, emotional or mental trauma around that time, then yes it is possible that the flu vaccine was your personal trigger. Sometimes we never find out what exactly caused it xxx

[AsheleyGreen in reply to Hazel_Angelstar]

Hi Hazel, All I know is that I was fit and healthy with no underlying health issues. Who knows? like you say, chances are we never really find out what causes this wretched condition. I truly would not wish this on my worst enemy. All I can say is that I am not going to have the vaccination this year and see what happens. Kind regards and best wishes xx

[desquinn Partner Volunteer FMAUK Trustee in reply to AsheleyGreen]

it is always imperfect looking back as a lot of people with fibro will have their symptoms catch up with them. Many people talk of RSI type symptoms in one limb that over 6 months become all over.

This is my experience and I put the initial symptoms down to my job. But trying to identify over that 6 months would be difficult but who knows if something triggered my body in the year before. I do not have a car crash or significant event to pin my fibro on. We all want to be able to stick a pin in the cause but looking back especially when we are bereft of good science on causes is always going to be imperfect.

[Hidden in reply to Hazel_Angelstar]

As Fibromyalgia is triggered by trauma - does that mean that it may go away again through time?

[Hazel_Angelstar Administrator FMA UK Staff in reply to Hidden]

unfortunately, it would appear that once you have fibromyalgia you have it for life. There are people who have written books etc about how they *cured* their fibromyalgia (usually through diet or other lifestyle changes) - and you can certainly reduce symptoms through making changes .... but there is nothing to support that it goes away completely (and aforementioned people are very unlikely to write a second book saying that their symptoms returned during a stressful time). there is also the potential that people who's symptoms have gone away, were mis-diagnosed in the first place !!!

[Hatelupus]

Hi Asheley. I had a reaction to the flu jab back in November 2018. 2 days after the vaccine I felt ill, very ill. I suffer from SLE as well as CFS and fibro. All the aches and pains felt like a flare. I was bed bound for 6 weeks with my daughter having to help me wash myself. I lost over a stone in weight, couldn't eat or move as it required energy which I didn't have. I was off work for a total of 8 weeks.

I saw my GP who put me on steroids and it took a while to sort out. I had an appointment with my consultant who said that a flare and the flu jab have no correlation . She was convinced it was just a minor reaction to the vaccine 😤

I believe otherwise, I think the vaccine triggered a huge immune response which is what I was left with. I didn't take the flu jab last year as I was terrified of becoming ill and depending on others to help me.

My view is I know my body and I know when I have a flare. To me the flu jab caused a flare all the symptoms of a lupus flare were there. Hope that helps x

[AsheleyGreen in reply to Hatelupus]

Hi there, sorry to hear of that episode. God, that must have been just awful! Only people who have experienced this can truly relate. I, too, asked my GP about the correlation - but she said there was none. I am not going to get a flu shot this year and see what happens. There maybe a chance that I was right and I may start to feel somewhat well again. I am prepared to take that chance. A friend of mine told me about oregano oil and how it has helped him with pain. Good luck to you and thanks for the comment. x

[desquinn Partner Volunteer FMAUK Trustee in reply to AsheleyGreen]

"I am not going to get a flu shot this year and see what happens. There maybe a chance that I was right and I may start to feel somewhat well again. "

I have never heard of anyones symptoms getting better from avoiding a flu shot. There will be people that have a reaction to things just like they do to peanuts or the Sun. But correlation does not mean causation and it could be that you were carrying something when you got the shot. And it was this that developed.

This years flu shot will be different than last years and next years. Next years may have covid19 in it or as a parallel dose. Who knows.

But I think the hope that you will improve if you do not have a flu shot is false hope and not how fibro presents itself. Its life long ans sometimes if you are lucky you can get remission. Activity for some can improve their dealing with and presentation of the symptoms.

best of luck.

[AsheleyGreen in reply to desquinn]

Thanks for the response. I guess I am just at my wits end with always being in pain. I thought once the weather improved that I would be feeling better- but my pain has become worse. Oh well, like everyone on here - one must crack on x

[desquinn Partner Volunteer FMAUK Trustee in reply to AsheleyGreen]

Its not to say there is not hope ad things that can be done but medication, activity and other options are perhaps a better path to be on.

Keeping active with pilates, yoga or tai chi and pacing yourself is worthwhile