So exhausted

[Mrs R]

Hi there,
I’ve just registered on this site. I’ve been diagnosed with fibromyalgia for about 15 years and try to manage my condition with vitamins and supplements and a healthy eating plan. I do get flares, but over time I’ve worked out the mine are mostly triggered by stress.
I would like to ask if anyone else gets extreme fatigue when they get the flu and Covid jab. I got mine 5 days ago and am really struggling just get a shower and dressing has me wiped out. Is this a common symptom.

 

[sunkacola]

Hi there,
I’ve just registered on this site. I’ve been diagnosed with fibromyalgia for about 15 years and try to manage my condition with vitamins and supplements and a healthy eating plan. I do get flares, but over time I’ve worked out the mine are mostly triggered by stress.
I would like to ask if anyone else gets extreme fatigue when they get the flu and Covid jab. I got mine 5 days ago and am really struggling just get a shower and dressing has me wiped out. Is this a common symptom.

Greetings, and welcome to the forum.

I have not had any problems with the Covid vaccine, and I never get flu shots. Others here have reported that they have had very difficult reactions to those vaccines, though, so you are in good company. I do not know whether or not it is common for people with fibro to have poor reactions to those vaccines in general, but it wouldn't surprise me if it were.

Most people with fibro find that when they are under stress their symptoms get a lot worse. I know that certainly is true for me, and when the stress is not something I can get rid of and it goes on for weeks at a time, it can have effects on me that last for months. Like you, the exhaustion and fatigue is intense. Last summer my beloved dog was very ill for weeks and I didn't even know if he would pull through. Even though he has been much better for the past 2 months I am still experiencing the bad effects from that stress.

I have been known to say that if my fibro were only the pain without the fatigue I would feel lucky, because I think it would be easier to deal with. But, of course, it is in large part the pain that causes the fatigue because it seems all the body's energy goes toward dealing with the pain and there's nothing left over for getting anything done.

 

[SBee]

Hi @Mrs R

I only ever had covid jabs during the worst of the pandemic. However, due to meds I am on for inflammatory arthritis, my immune system is compromised, so my GP has recommended covid, and flu jabs. Had flu a couple of weeks ago, and due covid next week. Also been told now I should have RSV (? Think thats right, respiratory protection) oh, and why not chuck in the possibility of the shingles vaccination too....

The flu jab ( my first ever ) gave me no problems at all, but on a rheumatoid arthritis forum, it seems a mixed reaction with some folk feeling quite poorly and others totally fine. I do suffer with chronic fatigue syndrome anyway.

Our bodies are so individual, and our reactions to meds are variable. In my mind, when our bodies\minds are particularly weak, its harder to cope with a new stress - and in some ways I do think a vaccination, whilst there to protect us, can seem like yet another new thing our bodies feel the need to try to adjust too.

I am slowly trying to see my chronic fatigue as a "warning light " that I am pushing my body to far, so as best I can, I step back, rest and try to figure out what part of my behaviour is worsening the fatigue. Its very much a work in progress.

 

[sunkacola]

@SBee , the doctor I was seeing until recently really tried to push me to get the shingles vaccine. I know that getting shingles sounds pretty terrible. But I checked into it and found out that having an adverse reaction to the shingles vaccine is pretty common. I can't seem to get myself to go and get it, and I think it's because if normal healthy people get adverse reactions, it's likely that people like us with health issues that are exacerbated by any kind of stress would get a bad reaction. A friend of mine with excellent health said every time she gets one she's ill for 2 days. Even though I didn't have a bad reaction to the first 3 Covid vaccine shots, I have resisted getting more of them, and am unlikely to get any more of them unless it were to be required for travel or something.

I think I've already had Covid. I don't know for sure because I didn't get tested. I had a home test the second time, but was far too ill to read or understand the instructions, so I never took it. And I actually think I had Covid at the very start of the Pandemic, before it was even known to exist. Both times I was severely ill, (but obviously recovered), and I was on my own both times.

I wish I could make sense of the fatigue I experience, but I have not been able to correlate it sufficiently with anything to determine a cause and effect for it.

 

[SBee]

@sunkacola
Like a lot of us I do my research. Initially I was against having additional vaccines, side effects ( both in the short term, and worryingly some very bad long term reactions ) were putting me off. Its a bit of a trade off really I think. My immune system is already pretty shot, I am still needing regular steroids as a top up to my inflammatory arthritis meds.

Its a toss up for me - take vaccinations and risk another flare up ( where the arthritis side tends to ramp up the fibromyalgia symptoms as well ) or stay unvaccinated and risk a potentially further debilitating illness which of course means the weakened immune system has to try to fight off along with the fibro \arthritis symptoms which are likely to flare!

At this stage with my inflammatory arthritis not being under control I know I need to put my usual considered objections to one side, and take the step that seems the lesser of two evils.
As you say if a generally fit and healthy person is seemingly likely to have reactions to shingles and other jabs ,the chances are those with fibromyalgia may well expect the same.

I understand what you say about fatigue not always having a known cause to flare up. But I am aware my character still finds it hard not to push myself further than I should - and these are the 'causes ' made by my own actions that I try to recognize and learn from.

You know, some days I find it exhausting needing to second guess my movements\actions and tell myself to stop and rest. There. Thats a little rant that had to come out

 

[sunkacola]

@SBee I fully understand your rant. could have said the same, myself. So very, very tired of being too tired to think straight or to get done more than the minimum required, not to mention how tiring it is to try to balance out everything I do and weigh cost/benefit of just about every day's actions in relation to the next day's needs, the day after that, and so on. Especially when even my best plans so often don't pan out anyway.

 

[30 plus years]

@sunkacola Just have to jump in here to say I was determined to get the shingles vaccination earlier this year. It's a series of two shots. After the first one my arm blew up at the injection site and was red and painful for a few days. Thinking this was more than a little soreness, I went to walk-in and the dr gasped and said it was an adverse reaction he'd have to report.
He told me not to get the second shot.

 

[Mrs R]

Thank you all so much for your reply’s. I think with me I’ve probably had this reaction this time, as I’ve been quite anxious about a few things and that is definitely a trigger for me. We all have to just try and work with this condition the best way we can.

 

[SBee]

Yes @sunkacola in some ways I 'borrow ' some of the next days energy in order to get done what needs to be done as a priority for the current day. By that, I expend a but more energy than I should, knowing that the following day I will need to do very little indeed to recover.

I'm kind of relieved in some way to hear you out the same thoughts and needed actions in place as well - sometimes I feel almost a bit useless in not being capable to even achieve small tasks at times due to severe fatigue. Your reply gives me some reassurance that it's not just me. However, I feel so much for any of us who live with chronic fatigue.

 

[sunkacola]

Oh, @SBee , it is definitely not just you! I think many of us are in the same situation. It's been especially hard for me to accept and continues to be a challenge for me daily because I was always such a go-getter, busy and active all of the time, with projects going and work to do in all of my time off work,. T o spend a day lying on the couch too tired even to read or concentrate on a movie would have been impossible for me even to imagine, and I sure never thought that would happen to me of all people. Maybe I burned my candle at both ends, and that contributed to where I am now, I don't know.

 

[SBee]

@sunkacola fatigue like that is so hard to explain ( to be fair, the whole of fibromyalgia is like that ). I would be interested to know where my chronic fatigue stems from. I had a 5 year part of my life with this some 30 years ago, then it eased. It started to come back about 3 years ago again along with current symptoms. I am unsure if its from the fibromyalgia or inflammatory arthritis or maybe neither, or both!

I have a phone assessment in a couple of weeks with a chronic pain clinic. If the opportunity comes up I would be interested in speaking to someone there who may be able to untangle what symptoms come from what condition.

I cant stay I burned the candle at both ends in my lifestyle, but on both occasions where chronic fatigue has hit have been at times of extreme stress, mentally and physically - and all of us are aware of the impact stress has on both of these parts of our make up.

 

[Auriel]

Hi Mrs R, welcome to our forum
, I had issues only on the 2nd one (I'm not sure if it's going to be a more regular thing) I've had 3 so far, no issue's with my flu one which I'm thankful for (as I had a hospital appointment 4 hours after it) anyway, hope everyone's is ok

 

[SBee]

Hi @Auriel hope things are all good in your world - please say theres been no more falls.
I'm spreading all this vaccinations out as much as I can, to lessen the chances of the body overwhelmed and setting off a flare. Thats the theory anyway.... ❤

 

[Jaclyn]

Hi there Mrs R - I hear what you are saying about the vaccines. We each have responses to them that are unique to us. My story is that before the covid epidemic I had been diagnosed with CFS/ME in 2015 following a really nasty dose of salmonella, preceded in 2012 by breast cancer, radiation and a return to work, now down to part time. My life limped along with a reduction in fitness, the usual story - no energy to stay active, a story that many of us suffer from. Then we changed country, I was diagnosed with a brain tumour - successfully resected - my mother died in another country and life telescoped into a series of events that needed action. By the time I resurfaced, covid had landed. Move through another year or so, without contracting covid, then the vaccines arrived. With the first vaccine I didn't connect the sudden pain in my arms and wrists to the injection. A month later and a second vaccine - well, my whole body reacted with pain that has only worsened over time, made worse by a third covid and flu vaccine in 2022. So, while many people have successfully managed the vaccines without a problem, I am amongst many who have had a bad reaction. Plus, two doses of covid virus, which haven't helped. We can't turn back the clock on the vaccines effects, but I won't accept any more flu or covid vaccines. I don't know if it will help you to hear this, but I do wish you well

 

[JamieMarc]

@sunkacola @SBee I am 58 and my doctor told me it's time for me to get my shingles vaccination. That was back in June. So I went into the pharmacy and got both my flu vaccination and my shingles vaccine at the same time. I was sick with flu-like symptoms for about 3 days. I've never had a reaction to a flu vaccination, so I asked my doctor about what happened. She said oh yes it's very common to get sick for 2 to 3 days after your shingles vaccine.

So as we know it's a two-shot process, and I am hesitant about getting the second shot because my doctor told me I will get sick again and it might even be worse. However, I do need to get it but I just need to plan a time on my calendar when I'm not going to be busy for at least 3 days.

I've had shingles before. And due to that and another condition that I have, it is important that I get the shingles vaccination despite the side effects, the very bad side effects.

So feel grateful @SBee that it's too soon for you to get yours yet because more likely than not you are going to have side effects.

I would say I wish my doctor had warned me but what difference would it have made? It's important for me and all older men and women to get the shingles vaccination. Cuz if you've never had shingles before, I guarantee you having shingles is much much worse than the side effects from the vaccination itself. You want to talk about pain? About nerve pain? Shingles is extremely painful!