when they started talking about the Covid vaccine in January, I phoned my GP to ask if I should have it as I have Fibromyalgia and Chronic fatigue, and in 2016 I had had a Lignocaine Infusion done by the Pain Management clinic, which left me unable to even sit up for 5 weeks followed by only being able to do approximately 10 minutes a day of normal daily activity before the chronic fatigue was so bad all i could do was sit or lie down for the rest of the day. Over the last few years I have managed to increase this to around 1 1/2 hours a day, my GP said it would be fine as the vaccine was a different kind of drug and it shouldn't affect it,
i had the first vaccine in March, after which as my GP had said it shouldnt affect the fatigue, when my fatigue flared up I put it down to the harassment I am getting from a gang of bullies, after about 5 weeks it stared to settle down a little bit, then i had the second one in May, since when, the fatigue has been really bad, it is now October and i can now do about 30 minutes a day of normal activity and it is not getting any better. I am now probably back to where i was in 2018.
i phoned my GP at the end of last week, you have to phone them, wait for somebody to call you back and assess you over the phone to see if you can see the GP, i explained this to this person who said, that a lot of people have had various side effects from the vaccine, BUT, the boosters they will be giving are the phiser ones and there are 'fewer side effects with that one', and that she didnt know what they could do about it and that i should 'try to increase mt daily activity', How helpful!!!! basically, tough, and do what you cant!!
it only takes one side effect, but hey, there are fewer with this one. this one may only put me back to the 2016 level, clearly doesnt matter does it. - doesnt say a great deal for your life in their hands does it?
I live alone, how do they expect me to cope with daily normal activity? I dont know how many years it is going to take for me to get back to the pre-vaccine level, without the booster adding to it on top of that.
sorry for the rant, but they are making me very angry
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catherine19611
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I appreciate where you are coming from and the need to rant. Do not agree with the HCP saying Pfizer has less side effects as that could be argued but ultimately past effect does not predict future occurrence so you could have a side effect or not and luck and genetics are at play.
You do not have to have the booster and while if it is being offered to you suggests that you should take it as covid would be worse potentially which is the value judgement to make.
BUT, I am not sure why you are angry with them. Sometimes (a lot of the time) HCPs do not have an answer as fibro is so complicated or the patient has too many variables. If I have a BMW and take it to a BMW trained mechanic and they say "ah well don't know what to do ....." I could be annoyed. But, a doctor does not have the specific knowledge of how the BMW was made, does not have any idea what modifications were made from the standard configuration, and more importantly does not have the Haynes or BMW manual to say it is this or that.
They are health care professionals and sometimes being professional is giving the best advice they can at the time and maybe saying I do not know. The do more activity slowly over time may seem trite if you are already aware of it but it does not make it bad advice.
Not meaning the above to come across as argumentative but to explain the situation from another perspective.
in march 2017 after i had had the lignocain infusion, i went back to see the pain management consultant, i asked him how long it would be before the side effects wore off. he said he didnt know and that when i went to the pain management clinic i should ask the staff there, Physio's, Phsycologist, nurses, etc. he was the consultant, he came up with the concoction he gave me and he had no clue if it would ever go away, but that those who were NOT consultants would know. when i went there i asked them and they said, they didnt know and that was something i would have to take up with the consultant
Morning,I too have CFS and Fibro, it’s okay to get things off your chest we all need to vent sometimes, I did feel unwell for 2/3 days with my 1st jap , but nothing on the 2nd, (Pfizer) I understand how you are feeling and living alone not really knowing if the booster will cause more fatigue on top of how you have been for the last few months. I agree with Desquinn that past effect does not predict future occurrence, the only help/advice I can offer is that it will give us more protection, fingers crossed I don’t get it but I am hearing so many local cases of Covid spreading with schools back in from September , i am trying very hard to stay safe and be sensible with a mask/hand gel /washing hands when I do venture out, although not mandatory I was amazed yesterday at the elderly socializing with out masks, personal choice I know. Cfs/fibro not the best combo to live with is it Catherine, just thought I’d reply to your post as I completely understand your dilemma.
Hello I have just been diagnosed with fibromyalgia.My symptoms with legs and a bit with my hands started after first Astra zeneca vaccine, within 3 days of second one my arms and hands were such I could only do 5 minutes use before cramping, numb fingers and pain Now suffering from domino effects. I'm scared to get the booster as if I become more disabled I will need carers. I live alone too.
Hi there. I can sympathise with you. I was diagnosed several years ago. I had covid just before the first lockdown. I got it from my work place. I recovered well. I work as a care assistant in a nursing home. My health is the best it’s been for a long time. Due to this and listening to my gut I decided the vaccine isn’t right for me. I don’t want to rock the boat. So consequently I was faced with the decision between my health or my job due to the impending mandatory vaccination for care staff. So I’ve chosen my health. It’s a difficult decision for us all. I do hope you find some relief soon. The problem is no one truly knows what the effects will be both to begin with and long term. I’ve known of people with allergies that were told in the beginning not to have the vaccine only to be told now that it’s ok for them to have it. It’s all a bit of a mess really.
1) About 40% of people getting COVID will develop Long Covid, many call "just like fibromyalgia and CFS". This means your fibromyalgia may in fact get worse if you get COVID, A LOT WORSE.
2) Covid Vaccines significantly decrease risk of contracting COVID or rapid viral replication even in breakthrough cases; they prevent severe disease and long-term consequences both medically and psychologically.
3) "New" technology used to make vaccines has in fact been researched and developed for many decades, they are proven safe in animals and humans.
4) The side effects from all vaccines like soreness, fatigue, and pain are common in ALL vaccines not just COVID vaccines, and they mean the vaccine IS WORKING properly to train your immune system to recognize the enemy, the virus. There is nothing to fear about that.
5) Finally, if you already had two shots of the nRNA vaccine you are considered "fully vaccinated". Unless you live in a high risk life style (work in a crowded mall) you don't have to take the booster until next year if you don't want to.
I called doctors about the vaccine, since the fibro I have been allergic to random medical stuff. So I was concerned about the jab. They advised me to get the AZ jab.
My body still didn't like it. It really upset my fibro and the arm that had the jab was so bad, so painful and just couldn't do much with it.
I had the 2nd one a while later. But because I have B12 injections (and apparently the vaccine effects absorbing it) I had the jab in my right arm. Even though you were supposed to have less symptoms with the 2nd dose, it still really upset my arm and the fibro, but fortunately slightly less so.
If we need to have booster jabs I will definitely get it in my left arm. As it was such a long time for my right arm and hand to recover from the jab.
It would be nice if they investigated the fibro, why we got it etc. Then doctors would be able to advise us all better.
I'm not entirely sure what triggers my flare ups and, fortunately, the vaccine didn't.If I had been told that there was a chance that I could have adverse effects I would have still rolled up my sleeve.
I know I suffer horribly when a flare up occurs but I also know I will come out the other side.
Get COVID and there are no guarantees that there is another side.
Fibrokim here. I had an awful day yesterday with FB. I felt like thumbs were pressing on my temples, painkillers didn't do anything. My legs were like Jelly and pins and needles. Pain in different parts of my body and felt exhausted. Feeling much better today and able to come to work, although just sitting quietly and not rushing about.
Regard the vaccines, I had Astra Zeneca for my first and second and had terrible side effects for a few days on both occasions. I also had terrible side effects from the flu jab last year and landed up in bed for a few days, however, I will still get the booster and the flu jab as I feel the positives will outweigh the negatives.
I have had Fibro for around seven years and have had very little help from doctors and the hospitals - The usual waffle about pacing yourself ( How do you know when you've done too much until you have and pay the price) exercise charts and irrelevant physio appointments with no hands on treatment. My own research into diet and medication proving more productive. When they rang me about the jabs I said I was concerned that as there was very limited testing on side effects and NO research into the interactions of the vaccines and my medications, the lady agreed that there was a risk that it could effect my health - She said they would not contact me again about it, which they haven't. My chief concern is that the various vaccines change your body's reaction to infection via RNA producing different new spike proteins not normally created by your own immune system and up to press there have been over 1.3 million adverse reactions recorded on the Governments Yellow card system. I dont want to risk regressing to the state I was in 7 years ago. I suggest you look at the various reports on the American CDC website.
I could have cited many sources for the same myth busting but it seemed to have most in one place. And if there was something that they said that was incorrect then you could point to it.
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