Please note: this article, and the meta-research mentioned within it,
is only discussing flu vaccines
The question of flu vaccinations in particular has come up recently. This is a very individual decision based on our very individual bodies. Current CRPS research is looking at the subtypes of CRPS, so sweeping statements about all CRPSers are inappropriate. For example, some people experience CRPS spread whilst others do not, some people have other immune issues and/or autonomic dysfunction whilst others either do not or experience few symptoms of these. I could go on, but you get the point – we are not the same simply because we have the same condition.
Everything needs to be considered for our individual body, with our particular array of conditions and symptoms. What is okay for one patient may be problematic for another.
This means that sweeping statements are something to be very cynical about. If someone says all CRPS patients should get the flu vaccine there will be some patients for whom it’s not appropriate. Similarly, if someone says that all patients should avoid the flu vaccine then there are patients who would have benefited who are consequently put at risk. So the first rule of thumb is to steer clear of the sweeping statements.
What you need is facts – so that you can consider your own personal situation in light of the information. You need to be able to make an informed decision.
The difficulty when looking for facts is that most of what we find online is influenced by opinion and to sift through the science you’d need to trawl through many medical journals, (preferably the smaller ones as the big journals tend to publish more of the research funded by pharmaceutical companies which means lots of bias, and don’t forget what I’ve said before about negative data not getting published, too). But helpfully (or unhelpfully depending on how you look at it!) an independent systematic review found that there is no really clear evidence for or against flu vaccines (Jefferson et al, meta-analysis, 2010).
So to make a decision about whether we should have the flu vaccine or not then we should focus on how it works and how that might function inside our particular body.
A bit about vaccines:
A vaccine is merely a weakened or dead version of the virus. The flu vaccine has always been a dead version but I have heard from a pharmacist that very recently this has changed as some are weakened rather than dead – so if your body needs you to be sure which your doctor is offering just ask in advance.
They work because our immune system learns from the experience of the weakened or dead version so that it is prepared if we are later subjected to the same strain of the actual virus itself.
The manufacture of vaccines for seasonal illnesses like flu has to begin ahead of time to enable the manufacture of enough vaccine. So the experts have to predict which strains of the virus are going to be the most problematic several months in advance. This of course means that there is room for error, even the experts can’t always predict the next haute couture in flu viruses that far in advance. So there can be strains of the virus around which the vaccines don’t cover.
Ultimately a vaccine allows the human body to have a swifter and harsher response to the strain(s) of virus it protects against. Which is good for us in general terms because immune issues are part of having CRPS (and for one subtype of CRPS may be the foundational factor), but as general terms is not enough when it comes to chronic illness – always look at your own personal health issues to make a decision appropriate to you and your body.
One common area of discussion among patients results from experiences of becoming ill after having a vaccination. There are several ways you can become ill after vaccination:
– The vaccine reduces your chances of catching the strain(s) of flu in the vaccine. So the potential for illness if you are subjected to these strains at some point is still there depending on various factors (including the state of your individual immune system).
– It is still possible to catch a different strain of the flu virus which wasn’t included in the vaccine, especially as your immune system will be busy dealing with the vaccine at the time.
Many people think the vaccine itself can cause illness which is not the case as the flu virus in the vaccine is most commonly dead. However, as I mentioned above, there are some flu vaccines which now involve weakened versions of the virus and I feel I should include a caveat here simply because the human body is a complex critter and I have had enough encounters with patients with rare diseases and immune issues to know never to say never! But yes, really, if you got ill after having a dead vaccine the greatest likelihood is that your immune system was rather busy and that you caught a different strain that the vaccine didn’t cover.
Also bear in mind that the vaccination can cause some symptoms reminiscent of the illness for a day or two as the immune system learns about it inside your body.
Plus those of us with chronic illness continuously hanging onto bearable health by our fingertips can become more susceptible to illness during this period.
Each year new strains of the virus have developed, so a new vaccine for the new strains of flu is created to help protect our bodies against them. This is why we are called in to our doctors’ surgery for a vaccine each autumn.
The vaccine positive: Reduced chances of getting flu. The key word is ‘reduced’, it’s pretty vague because different research has come up with different statistics on how well the vaccine works.
There are various aspects to this, we each have different bodies with our own immune system, does our body tackle this stuff well or not? Is this likely to work for us as an individual? Have the experts’ educated guesses been as good as usual about which strains are going to be the big problems this coming winter? We have to weigh up both sides and decide what’s best for each of us.
Personal vaccine positives: vary for each of us because getting or not getting flu is just the beginning in our chronic illness vaccine considerations. Being what we CRPSers tend to playfully call ‘normal ill’ means that our pain management regime is severely disrupted. We cannot maintain our usual paced daily activity which means that a pain flare is pretty much inevitable. What that means will vary for each of us, and even more so once we start taking our other related conditions (comorbidities) into account because being ill often has a detrimental affect on those, too. So what would be a week of flu for an otherwise healthy person becomes weeks or months of extreme hideousness for us chronically ill folks as we a) work through the flu itself and then b) work through the longer task of trying to get our health back to the level it was before we got ‘normal ill’ on top of our chronically ill which screwed up our delicate balance needed to manage our health as best we can. (Grr)!
We each have to weigh up potential injection-event pros and repercussive cons against the potential mega-flare that will result from having to get through a bout of flu on top of everything else. CRPS patients of any age fall into the ‘at risk’ from flu category courtesy of our compromised immune systems alone, before we even get started ticking off other stuff on the ‘at risk’ list and yet some patients out there could have good reasons to avoid the injection event. Sweeping statements do not apply.
For me personally I avoided the flu vaccine for years and every year I got ill and spent pretty much the entire winter trying to claw my way back to some semblance of functionality again. So I finally tried it (back in 2010) to see how it worked for me, and in my case it was a positive experience. Actually it was a reeaally positive experience because I’ve not had the flu since. Wowsers! Now that I know that, it’s a no-brainer for me! I cannot face the mega-flare that results from me getting flu. I have been through that delightful experience many times and each time it took me weeks, and sometimes months, to get back on track. Horrific doesn’t really cover it. So having tried both sides I now know that I personally would much rather have the vaccine to give me a greater chance of dodging the flu and instead incur a mere few days of potential flu-like symptoms as my body gets trained in kicking the butt of this years virus strain. I’ve had completely transformed winters since I started having the vaccine each autumn. But that’s me personally. You have a different body, a different set of symptoms, a different set of conditions. What works for me or for anyone else is irrelevant, you need to think about what works for you.
So when people warn CRPSers against vaccinations what are they referring to?
Some of us have bodies which do not favour even such small invasive procedures as one needle. Good general advice is to to have the flu shot in an area unaffected by CRPS. If you are still unsure then discuss the potential difference of using a smaller children’s (paediatric) needle and whether that may be worth a try.
Perfectly healthy people can experience soreness in the area of the injection site so the potential for soreness is there anyway, and possibly amplified pain if our autonomic nervous system is playing up about it.
There are also some basic things to take into account:
If you have any allergies then these should be discussed with your medical team beforehand to assess how appropriate it is for you. There is also a standard list of questions that the nurse should run through with you beforehand, particularly ‘are you allergic to eggs?’.
If you’ve had a reaction to the flu vaccine in the past it is likely you will be advised not to have it again.
If you have an extremely poor immune system you will also need to discuss it with your medical team as you may be advised against the flu vaccine
Each of us has a good idea about what our own bodies can handle. We know ourselves best. We live inside these bodies of ours and we know what is likely to set off a flare, and if so how bad it could be, and whether we are prepared to go through with that. For me personally, vaccination is well worth the positive outcome I experience from it, but we each have to make our own decisions.