The flu vaccine topic is always controversial among those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS), and H1N1 added a whole new layer to that this year.
The big fear with the regular seasonal flu vaccine is that it triggers flare-ups in some of us, so the debate is whether a possible flare is worse than the illness -- adding to the mix that the flu typically hits us harder and longer than it does healthy people. The medical community is about as conflicted about it as we are.
So, on top of all this comes H1N1 -- a flu that's especially hard on people with neurological illnesses and those with weakened immune systems. (Not all doctors recognize that FMS and ME/CFS are neurological or neuroimmune disorders, but that doesn't change the fact that the preponderance of research says they are.) Do we risk catching this one, or risk a vaccine-related flare? It opened a whole new can of worms for us to consider, and because we just don't have all the facts, each of us really has to answer these questions for ourselves and decide which risk to take.
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What have you decided? Have you gotten one or more flu vaccine this year? What factors weighed heaviest on your decisions? If you've had the vaccine, did it make your symptoms worse? Take the poll, and share your comments below!
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Because I also have asthma, and anything I get sick with turns into bronchitis and very few antibiotics work on me anymore, my pain management and primary docs are both strongly recommending I receive both vaccinations. I got the seasonal flu shot, and really didn’t have too many issues — just a mild fever and a little extra achiness. My pain mgmt doc did have me take ibuprofen (600 mg) every 4 hours for 3 days immediately following the vaccination. I still cannot find the H1N1 in my area, although I am considered “high risk,” which is very frustrating. I work at a small private school, we have had two confirmed cases of H1N1 already, and we are in very close quarters, so frankly, I’m quite nervous I’m going to end up catching H1N1 before I can get the vaccine and it becomes effective. However, that being said, I do intend to get the “piggie flu” vaccine as soon as I can find it in my area. I’d rather take the chance of a flare than the possibility of hospitalization from aggravating my asthma or contracting bronchitis on top of H1N1. I just can’t take the risk. But that’s me . . .
I received my yearly flu vaccination yesterday, and as usual, it completely wiped me out for the entire night. It’s like having a bout of mini-flu so that I won’t get the Big Flu later on in the season.
But, at least for this year, I’m going to pass on the H1N1 vaccine. It’s too new, and researchers don’t know what the short- and long-term effects of the vaccination might be. ME/CFS keeps me from coming into contact with people most of the time, so I’m not too concerned about contracting the H1N1 virus. I’m taking a wait-and-see attitude about the H1N1 vaccine until more scientific evidence shows whether it’s safe or not for those of us with compromised immune systems.
Wishes of healthy days and nights to all of my ME/CFS/FM sisters and brothers out there, and may none of you get any kind of flu this season!
Those with ME/CFS/Fibromyalgia would do well to read what Dr Mikovites has to say about the mechanism of vaccines. Certainly those of us with Lyme Disease have been advised by LLMD’s not to have the vaccine.
http://www.huffingtonpost.com/david-kirby/is-autism-associated-with_b_316986.html
Mikovites says that if we have a retrovirus it enters our cells and is replacated by cell replication. Vaccines work by getting our cells to replicate many times so in effect we are replicating a virus we already have. Of course Miklovites says it much better than I can.
I received the following advise from a friend in an email. I don’t recognize the name of the doctor that it is from but I consider it practical so I thought I would pass it along to those like myself who do not plan to have the flu shots.
The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it’s almost impossible to avoid coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.
While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections,some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock Tamiflu):
1. Frequent hand-washing (well highlighted in all official communications).
2. “Hands-off-the-face” approach. Resist all temptations to touch any part of face (touch only when you eat or bathe).
3. Gargle twice a day with warm salt water (use Listerine if you don’t trust have clean salt). H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don’t underestimate this simple, inexpensive and powerful preventative method
4. Similar to 3 above, clean your nostrils at least once every day with warm salt water. Use a neti pot or saline spray and then blow the nose hard once a day and swabbing both nostrils with cotton buds dipped in warm salt water is very effective in bringing down viral population.
5. Boost your natural immunity with foods that are rich in Vitamin C (Amla and other citrus fruits). If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption.
6. Drink as much warm liquids that you can. Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.
I’ll be getting the seasonal flu vaccine. I don’t need the H1N1 vaccine since I was one of the people that got the flu before the vaccine came out. Nasty flu, I was down and out for a good 2 weeks, and at least another 2 weeks where I wasn’t good for much. Flu and fibro are not a fun combination.
I get the seasonal flu shot every year and really have no reaction to it. So far I have not gotten the H1N1 because it is still not available to me. My husband (healthcare worker) got the mist and had no reaction to it. He has asthma, so I was a bit worried. My son got the shot and has been fine. I am not concerned that the H1N1 vaccination is any different than a seasonal flu shot. I also have asthma, and because the H1N1 virus seems to especially attack the lungs, I’m definitely getting the vaccine as soon as possible.
The e-mail mentioned above is circulating with various doctor’s names on it. While some of the practices mentioned are good ones (hand washing, keeping hands away from face), gargling will not help prevent H1N1. It won’t hurt you, but don’t count on it protecting you.
Hi All,
Hi Ihave a had the H1N1 vac (on the 27/10)….. I can say that my reaction to the H1N1 vac was less then I would normally have from seaonal vac and/or pneumonia vac….they would normal make me feel off colour for a couple of weeks …….but other then temporarily making my numbness worst for a few day and even this has settled back down to pre vac levels ……overall I have been happy withthe whole processed…..and I have to admit I was extremely apprehensive about having it to begin with but due to other health issues …..I really had to take a leap of faith……..I live in Australia and the vac that the government are suppling to us is the Panvac H1N1 Vaccine…..I don’t know if this differs to what is available elsewhere or if others might give a different outcome…….Diane
I had the H1N1 vaccination at the school where I teach. At 49, I wasn’t expecting to get the vaccine at all. I have fibromyalgia, but haven’t had any side-effects from the vaccine (4 days out from it today). After watching multiple students being absent anywhere from 5 to 9 school days with the flu, it seemed like I could chance it. Now, I’m thinking about getting a regular flu shot even though last time I got one it seemed to set off an entire winter of illness.
I am concerned about the number of people being told & believing that the H1N1 vaccine is a ‘new’ vaccine that needs to go through testing.
The flu vaccine is different every year, incorporating the various strains believed to become prevalent in the upcoming season. It is only due to the late development of the H1N1 that it was not able to be included in the ’seasonal’ flu vaccine & required a separate vaccine to be administered.
Vaccines given as an injection cannot give you the disease, because they are using a killed virus. The intra-nasal vaccine has a weakened virus, which is why people with certain medical compromises should not receive it.
The linked article above regarding vaccines & autism actually does not address the flu & is not based on anything other than theory. The supposed ‘link’ between vaccines & autism has been scientifically disputed & proven to be false – there is not a greater incidence of autism in children who have been vaccinated than those who have not, & the mercury compound used to preserve the vaccinations is not the same toxic form of mercury that can cause severe health & development issues.
I know that having Fibro or CFS makes us more accutely aware of the medical community & their findings, theories ,etc. But please, let’s be wise & not jump to conclusions that are not based in anything more than theories just as we ask doctors not to dismiss our complaints just because they havent found a way to definitively test & prove our illness.
Get the H1N1 vaccine, the effects (if any, not everyone has commented that they had a flare-up) are far better than the flu itself, and this strain, if you get it, has a greater chance of overwhelming your immune system before you can ‘kick it’.
Tara said everything I was going to say. LOL The mercury in the vaccine to preserve is less than what you get eating a tuna sandwich. I live in Ontario and it sure isnt hard to get the H1N1 vaccine. I got mine a few weeks ago and other than a sore arm which is normal I had no other side effects. I will be getting the regular flu shot next month when my Dr. refills my prescriptions for my pain meds. We are so lucky to have these vaccines and I am shocked at the amount of people that are not plannng on getting them.
I am curious am I the only person with Fibromyalgia that gets a horrible flare up from the seasonal flu shot? I have not gotten this year b/c the last two years were HORRIBLE for me! Am I a loner on this?
Ihad both vaccines just over a week ago and have had chronic fatigue and wide spread pain i also feel very depressed as i am unable to do my job.I was diagnosed with fybromyalgia 2 years ago but had the symtoms for at least 20 years after a viral infection.In hindsight i wish i hadnt had the vaccines.
I also get a huge flsreup but not for 2 weeks after. Tiredness and general pain. I get this each and every year with same results, but after having flu I’d rether get the shot. So Lisa you are not alone.
I had the regular flu shot years ago and had a terrible reaction to it. Since then my doctor refuses to give it to me. He says he can more easily treat me for the flu than a terrible fibro flare that could last for months.
I had the H1N1 flu in august. It was miserable, but no worse than any other flu I have had. I would say it was the Worst cough I have had, but I would not consider getting the h1n1 shot because I probably don’t need it now.
If you are in relatively good health.. other than your fibro..I doubt you need it.( of course if you are around small kids all day that might make a difference.. such as teachers or Moms of little ones.
I got my H1N1 shot on Nov 10th with no adverse reactions. I qualified to get it in the early rounds given I have RA and am on two medications that suppress my immune system functionality, Methotrexate and Humira.
For those considering the shot, I must say the peace of mind of not getting this flu that is landing so many with pre-existing conditions in the hospital was well worth the tiny prick in the arm.
Like I said, no adverse reaction at all. Lisa
I caught the H1N1 virus this fall along with my entire family. I would have paid any price to receive the vaccine instead of getting sick. It was one of the most painful episodes of flu I have ever had and it made my fibromyalgia 10 times harder to deal with. I had joint aches on top of every fibro spot flaring up. The headache was like a 3 day migraine. I wasn’t able to get out of bed for 5 days and with the added fatigue of flu in addition to Fibromyalgia I was worthless for 2 weeks. A week after my fever broke from H1N1 I received the seasonal flu vaccine. I did end up getting a slight fever and fibro flare up the next day from it but I can’t take another full blown flu.
In additon to dealing with FM I hold a full-time position as a public health nurse. I appreciate all that people have shared about their experience after recieving vaccines. However, after interviewing over 40 individuals who have been confirmed with the diagnosis of H1N1, and losing two basically healthy individuals from our county, I encourage anyone who doesn’t have a direct severe reaction to flu vaccine to recieve the H1N1 vaccine. I along with all the other nurses at my health department did not suffer any side effects. It’s always hard to determine what exactly is the cause of my fibro flares, I did experience an slight increase in muscle pain and fatigue the week following the vaccine, but I was also sleeping less hours, working more hours, and dealing with both work and personal stressors – all which have been associated with flares in the past.
Well, I’ve had the swine flu twice already, once in June and once in October. My doctor thinks that I’m having trouble making antibodies to it, which can happen with CFIDS patients. So, I’m really torn about whether to get the H1N1 shot or not at this point. I had the regular flu shot a couple of weeks ago and it was fine — some years it’s fine, others I get a mini flu as someone else here was saying.
But it would be nice if I had the choice to get the swine flu shot though. I’m in NYC and it’s like gold dust here. My regular doctor is on a waiting list for it and has no clue when she’ll get it. There are some free clinics giving it out but their rules change daily about who can and who can’t get it, and so far people with immune disorders have not been on the list!
Is anyone else here having trouble getting the H1N1 shot?
Received the seasonal flu shot on 11-7 and the H1N1 on 11-11. The only side effect, aside from a bit more aches than normal, was that I actually slept for six hours. My sleep patterns are awful, even w/Ambien, but if I can have six hours of uninterrupted sleep, I’d get the shot again.
I had the H1N1 flu about a month ago. I was given Tamaflu, which I do not think did a thing. I don’t remember ever being so sick. I ran a fever for about a month and was flat on my back for the same amount of time. I just got the seasonal flu shot a week ago. My doc says I don’t need to get the H1N1 because I already had it. I sure hope she is right. Be careful out there!
OK, so I *FINALLY* found the H1N1 vaccine in my area last Friday (11/20) and got it. And my reaction really wasn’t that bad. I took 600 mg of ibuprofen every 4 hours for three days, per my pain mgmt doc’s orders, and the only day I felt pretty lousy was Saturday. My arm where the mean little nurse stabbed the hell out of me still hurts like the dickens, but that’s another story!
Keep in mind that I had not been feeling well the entire week, had a nerve-block shot in my browbone on Wednesday 11/18, and was starting a minor flare. So all in all, I think I did pretty well with the H1N1 vaccine. I’d rather have the vaccine and risk a flare than the flu — I have too many risk factors to chance getting the actual flu, and there have been 34 deaths in my area already. I’m still being really careful to wash my hands and follow all that stuff (I’m a germophobe anyways), but . . . looooong story short: I’m glad I got both the H1N1 and seasonal flu vaccines. I didn’t feel too awful after either one, and the peace of mind they’ve given me is nice.
I received the H1N1 and seasonal flu shot on Nov. 17th because of where I work I have to have it. I have had some small flare ups in the past with fibromyalgia, but with having the H1N1 shot I ended up with a full blown flareup for the last few days. I just had it confirmed by my doctor and went for some physio today. This has been a very painful week. Trying to do my work is very hard. At least though I know why I am feeling as bad as I do now. I didn’t know what was going on.
My mother suffers from fibromyalgia, and received the H1N1 vaccine yesterday. Today she is in agony. Her description of her symptoms is as though the muscles in her entire body are twisted. Her doctor’s advice was to “take it easy for the next few days”. I’m so frustrated for her. Is there anything any of you would recommend?
I had both shots and I had no reactions. I was hesitant to take them because in the past, I would have flu like symptoms shortly after the shot. The only difference this year is that I am on Savella. I don’t know if that had anything to do with the lack of reactions. I am just glad I had no problems.
I’ve been on antibiotics most of the past 2-3 months so I’ve not had the regular flu vaccine yet, but had the H1N1 yesterday afternoon. Only my arm/shoulder was achy last night, but this morning – lots of widespread pain in muscles & joints, very achy, chilling & tired.
I am not working and my four year old does not go to daycare because I had such terrible flare with the weather turning cold and do to past history with the flu shot my doctor and I decided it was not worth everything I usually go through. Sorry I haven’t posted earlier…it’s been over a month since I last posted! Things have just been so hectic and I have just been “making it day to day…I read the post earlier but just hadn’t yet taken time to post. I have so much going on health wise right now! I do appreciate each of you that answered! I pray 2010 is a very managable year for you!
I always receive my annual fu shot. Because of my asthma, I received my H1N1 vaccine. I have a non-specific auto-immune and connective tissue disorder with fibromyalgia and chronic fatigue/pain. I havce been med free since June without any flares!!! Within 48 hours of receiving the H1N1 vaccine, I am now in the worse flare I have had in almost a year!
I can’t believe the comments by naive people who are ill from vaccines, don’t get it, and go back for more. Do a search of vaccine damage, and vaccine ingredients, and stop being test subjects for these faulty and fradulent products.