• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Flu vaccine

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Does everyone on here get flu vaccine? I want to know if anyone had adverse reactions to the shot, and if it did indeed prevent getting the flu.

I have never gotten flu shot, and think due to COVID that getting flu shot is very important this year.
Please let me know your experience with flu shot.

Thank Starlily88
 
Last edited by a moderator:

Rebeccare

Moose Enthusiast
Messages
9,066
Location
Massachusetts
People here seem to have a wide range of reactions to the flu shot.

The first year I was sick with ME/CFS I got the flu badly, so since then I've gotten the flu shot every year. Usually it makes me feel under the weather for several days, but after that I'm fine.

I've had the flu three times in my life, twice when I had gotten the flu shot as a child, and once without the flu shot. It was miserable each time, but the one time I didn't get the flu shot I ended up with pneumonia (plus an injured rib from coughing so much!). The flu shot can't always prevent the flu--it depends on whether the vaccine is a good match for the strains of the virus that are circulation. But even if you do get the flu the vaccine can help your body fight it off a little more easily.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
People here seem to have a wide range of reactions to the flu shot.

The first year I was sick with ME/CFS I got the flu badly, so since then I've gotten the flu shot every year. Usually it makes me feel under the weather for several days, but after that I'm fine.

I've had the flu three times in my life, twice when I had gotten the flu shot as a child, and once without the flu shot. It was miserable each time, but the one time I didn't get the flu shot I ended up with pneumonia (plus an injured rib from coughing so much!). The flu shot can't always prevent the flu--it depends on whether the vaccine is a good match for the strains of the virus that are circulation. But even if you do get the flu the vaccine can help your body fight it off a little more easily.

Thanks RebeccaRe. I was always afraid of my reaction to the shot so never got it. Thanks for this information. Seems like a good thing to do - thought auto compromised people would react badly, thanks again.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
I'm one of the PWME who rarely gets regular illnesses like colds and flu. I've had ME/CFS since 2003. I haven't had the flu since 2004 and haven't had a cold since 2007 (although I did have a strange sore throat with much deeper voice last year, and extra fatigue, but those were my only symptoms).

I haven't had any flu shots in all those years. And since I haven't had a flu in so long I'm assuming that I either have a hyperactive immune system that fights it off easily, or an underactive one that doesn't show any symptoms of the flu. I don't know which it is, or if there's another possibility. Either way, I've seen and heard how many people feel worse when they get the flu shot. I feel bad enough already so I'm avoiding it.

As for the risk of being a carrier who could get and pass the flu on to others even though I don't show symptoms, I'm housebound and rarely see anyone except for a few close family members who live together, so that risk is extremely small.
 

godlovesatrier

Senior Member
Messages
2,554
Location
United Kingdom
I could potentially not get it this year, but worry about catching it from my gf. So for that reason I'll get it. Immune response varies each year. But on the whole I react fine. I've never had a terrible reaction, the one time I did I'm convinced it was because I had just started taking japanese knotweed, which has some unpleasant side effects.

Also my immune system is 100% under active, I'm normally sick back to back without fail. Although last year was actually the first year I had a semi normal immune response.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
My illness with ME/CFS seems to have been brought on by a flu shot. I would go home 1 day a week and sleep for 12 hours solid! I had the flu badly the year before, so thought I was being smart by getting a flu shot. This was 20 years ago, and there was no Internet or knowledge on my part of the Vaccine Injury Court, so I 'm shit out of luck again due to this crap malady!

GG
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
I had both the shingles and flu recombinant vaccines a few days ago. The next day after the shingles vaccine I came down with a cold-like illness that was pretty severe for a day then remitted over about two days. A pharmacist said that is a known side effect. I didn't have any problems with the flu vaccine.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Does everyone on here get flu vaccine? I want to know if anyone had adverse reactions to the shot, and if it did indeed prevent getting the flu.

I have never gotten flu shot, and think due to COVID that getting flu shot is very important this year.
Please let me know your experience with flu shot.

Thank Starlily88

I don't usually get the flu shot because I haven't had a cold or a flu in 10-15 years or more. My immune system from ME/CFS seems to be chronically activated. I have had flu shots before and just felt very mildly off. Like maybe I was starting to get a cold or a flu but the symptoms were very mild and only lasted 2-3 days.

I don't know if it prevented the flu because my immune was so high already from ME/CFS and I hadn't had the flu in years. The reason I got the flu shots I did was because I thought I was catching every cold and flu there was for years.

What I learned since is that what I thought were colds or flu I was constantly catching were actually ME/CFS flares, which feel exactly like the flu.
 

Abrin

Senior Member
Messages
329
I haven't gotten the flu shot in a long time, not because I am against and I've never a bad reaction to it. It is just because it always turns out to be such an exhausting ordeal for me to have to go out to and get it.

I was just talking to my husband tonight about whether or not I'll be getting one this year but because I am stuck in the house full-time right now what will probably end up happening is that he will just end up getting it since he is the only one that interacts with the outside world.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
My illness with ME/CFS seems to have been brought on by a flu shot. I would go home 1 day a week and sleep for 12 hours solid! I had the flu badly the year before, so thought I was being smart by getting a flu shot. This was 20 years ago, and there was no Internet or knowledge on my part of the Vaccine Injury Court, so I 'm shit out of luck again due to this crap malady!

GG
GG - so you think you got ME from getting the flu shot? So you haven't had any flu shot for the last 20 years?
But you do have ME/CFS brought on by the flu shot?
Wow that is awful, let me know, thanks Starlily88
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I had both the shingles and flu recombinant vaccines a few days ago. The next day after the shingles vaccine I came down with a cold-like illness that was pretty severe for a day then remitted over about two days. A pharmacist said that is a known side effect. I didn't have any problems with the flu vaccine.
So sorry you had a terrible reaction to the shingles vaccine - assume you got the new shingles vaccine they invented to make the original one better?
I have had shingles 2 times so far - never got the vaccine - sort of thought once I had it, wouldn't get it again.

Glad you had no problem with flu vaccine, thanks for the information, and sorry you got so very sick - Starlily88
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
assume you got the new shingles vaccine they invented to make the original one better?

Yes it's the new one and thanks. It was a short cold side reaction. About 3 days. If it really prevents shingles then it's worth it. I had shingles disease once before and my doctor caught it fast and used an antiviral to stop it before it caused severe nerve pain.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I don't usually get the flu shot because I haven't had a cold or a flu in 10-15 years or more. My immune system from ME/CFS seems to be chronically activated. I have had flu shots before and just felt very mildly off. Like maybe I was starting to get a cold or a flu but the symptoms were very mild and only lasted 2-3 days.

I don't know if it prevented the flu because my immune was so high already from ME/CFS and I hadn't had the flu in years. The reason I got the flu shots I did was because I thought I was catching every cold and flu there was for years.

What I learned since is that what I thought were colds or flu I was constantly catching were actually ME/CFS flares, which feel exactly like the flu.

Thanks for the info. I never thought of getting the flu vaccine - not against it - but like you I had never had the flu my whole life. But then maybe 6 years ago I got it - it was so awful - I felt like I was dying - it was the worst thing I had had up till then.

My ME/CFS titers are or were chronically activated or overactive - so I thought that's why I didn't get it, but I also avoided all drs in Jan/Feb/March also, and always wore a mask if I had to go to store.

I am in flair of my ME/CFS for last 2 weeks - taking more meds to sleep more, since I was only sleeping 4/5 hours a day - and my glands blew up, and I was so so tired.
Now with more meds - get more sleep - but still so exhausted.
It has been only 5 months since the untimely death of my younger brother - and I was very close to him, and he was very healthy - so I have been dealing with all his stuff in another state, going on adrenaline for 5 months, and then - boom - I am exhausted from it all.

So now I am super afraid to get the flu vaccine at this point due to being so weak and tired,
Starlily88
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Yes it's the new one and thanks. It was a short cold side reaction. About 3 days. If it really prevents shingles then it's worth it. I had shingles disease once before and my doctor caught it fast and used an antiviral to stop it before it caused severe nerve pain.

Yes if it does prevent shingles it is worth it - I got shingles about 10 or so years ago, exposed to my dr who was oozing it from his eye - and wham, it came on.
You were lucky - my Dr gave me zero anti-viral - don't know why - so I just assumed there were no meds for it.

I am not as brave as you to do the shingles vaccine with the flu vaccine - I am so afraid of getting worse ME symptoms with either of them.
I already have so many allergy symptoms for last few weeks - so I feel horrible
Thanks for your input on this, that helps me a lot, Starlily88
 

Davsey27

Senior Member
Messages
514
Yeah I understand it's not an easy decision.Heavy metals in vaccines can be problematic for some

I think with the viruses involved with ME and potential heavy metals each create a degree of oxidative stress.Though vaccines have their place
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
People here seem to have a wide range of reactions to the flu shot.

The first year I was sick with ME/CFS I got the flu badly, so since then I've gotten the flu shot every year. Usually it makes me feel under the weather for several days, but after that I'm fine.

I've had the flu three times in my life, twice when I had gotten the flu shot as a child, and once without the flu shot. It was miserable each time, but the one time I didn't get the flu shot I ended up with pneumonia (plus an injured rib from coughing so much!). The flu shot can't always prevent the flu--it depends on whether the vaccine is a good match for the strains of the virus that are circulation. But even if you do get the flu the vaccine can help your body fight it off a little more easily.

Rebecca - how come 2 people on here are saying that "you can't get the flu vaccine with the thimersol preservative because it is mercury, and they use this with multi dose vials, and it gets into your brain?
And there are heavy metals in flu vaccines?
Is this all true? What do you think? It is all very upsetting to me, thanks Starlily88
 

Rebeccare

Moose Enthusiast
Messages
9,066
Location
Massachusetts
Rebecca - how come 2 people on here are saying that "you can't get the flu vaccine with the thimersol preservative because it is mercury, and they use this with multi dose vials, and it gets into your brain?
And there are heavy metals in flu vaccines?
Is this all true? What do you think? It is all very upsetting to me, thanks Starlily88
I can understand your anxiety! I will start out with the disclaimer that I am definitely not an expert on this topic.

There is a small amount of an ethylmercury-based preservative called thimerosal in multi-dose vials of the flu vaccine. This is because with a multi-dose vial multiple syringes are being filled from the same vial. Even though each needle is sterile, there is a small chance that bacteria could be introduced into the vial. So thimerosal is added to prevent bacteria from growing. I remember reading somewhere that the total amount in the entire multi-dose vial is roughly the same amount that would be in a can of tuna fish (but I don't remember where I read this, so don't quote me).

However, the type of mercury in thimerosal (ethylmercury) has a different chemical makeup than methylmercury, which is the type of mercury that you might be exposed to when eating fish. While methylmercury can stay in the body for a long time and build up to levels that might cause harm, our body can break down ethylmercury (the one in the vaccine) much more easily, and it is usually cleared from the body within a week.

So there is a very small amount of mercury in vaccines, but it shouldn't stay in the body for very long. Although most scientific studies have not linked thimerosal in the flu vaccine to problems beyond just pain and swelling at the injection site, there are some people who are still anxious about it.

The good news is that it if being exposed to thimerosal does cause you concern it is possible to get a preservative-free flu vaccine. These come in either pre-filled syringes or single-dose vials, so there's no danger of bacteria being introduced into the liquid. If you want a preservative-free vaccine it's a good idea to call ahead before going in and see if the pharmacy or doctor's office has them--sometimes they don't have them on hand but they're usually willing to order them for you.

Like I said in my original post, people here seem to have a wide range of reactions to the flu shot. A lot of us seem to be able to get it with no problems, while other people seem to react more strongly. Personally, I do think that it's important to get it this year. On the other hand, I wonder if all of the precautions we're taking due to covid (masks, handwashing, social distancing) might make the flu circulate a little less. I know that since I won't be in a classroom full of children this winter I will be getting much less potential exposure! So if people don't get the vaccine but are strict about following all of the covid precautions, I think that might also reduce the risk of getting the flu.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I can understand your anxiety! I will start out with the disclaimer that I am definitely not an expert on this topic.
The good news is that it if being exposed to thimerosal does cause you concern it is possible to get a preservative-free flu vaccine. These come in either pre-filled syringes or single-dose vials, so there's no danger of bacteria being introduced into the liquid. If you want a preservative-free vaccine it's a good idea to call ahead before going in and see if the pharmacy or doctor's office has them--sometimes they don't have them on hand but they're usually willing to order them for you.

Like I said in my original post, people here seem to have a wide range of reactions to the flu shot. A lot of us seem to be able to get it with no problems, while other people seem to react more strongly. Personally, I do think that it's important to get it this year. On the other hand, I wonder if all of the precautions we're taking due to covid (masks, handwashing, social distancing) might make the flu circulate a little less. I know that since I won't be in a classroom full of children this winter I will be getting much less potential exposure! So if people don't get the vaccine but are strict about following all of the covid precautions, I think that might also reduce the risk of getting the flu.

Thanks so much RebeccaRe for explaining this, and being the voice of reason. So a preservative free vaccine - comes in either a pre -filled syringes or single dose, thanks for this information.
Hearing from people that flu vaccine caused their CFS is scary to me, never heard of this, but thanks for explaining this. Starlily88
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I can understand your anxiety! I will start out with the disclaimer that I am definitely not an expert on this topic.

There is a small amount of an ethylmercury-based preservative called thimerosal in multi-dose vials of the flu vaccine. This is because with a multi-dose vial multiple syringes are being filled from the same vial. Even though each needle is sterile, there is a small chance that bacteria could be introduced into the vial. So thimerosal is added to prevent bacteria from growing. I remember reading somewhere that the total amount in the entire multi-dose vial is roughly the same amount that would be in a can of tuna fish (but I don't remember where I read this, so don't quote me).

Rebecca talked to my infectious disease dr today (no drumrolls here, I met him one time last October in my search for new dr). He said the flu vaccine I would get is single dose vial, and preservative free. I have 2 more dentist appts for my new implant - so waiting for them to be over. Still scared to get this.
The vaccine is only good 50% of time, and it doesn't know what strain it will be. I have so much fear but had a severe respiratory virus Feb - April 8 weeks - they thought it was COVID.
Thanks for your support RR