I have had this 'condition' for about 9 years now and resist sharing due to the reaction i usually get in daily life. I have coped using several different strategies as I really do not like using powerful medications (they seem to exacerbate symptoms so I don't waste precious time). I have friends and family who have been incredibly supportive in the past but I'm finding that recently their eyes glaze over if I respond honestly when they ask how I am. I guess part of the problem is that I 'look' fine and because I try to lead a normal life without too much complaining it is wearing a bit thin. That hurts even more than the physical pain. I have had various problems in the past 6 months which started with a UTI and my GP has been amazing in making sure I have had a barrage of scans and tests thereby ruling out all the nasty possibilities. I felt I was turning a corner (as we often do) then I had my flu jab on Saturday which really kicked everything off again. I don't usually have a reaction to the flu jab and I am just glad I opted not to have the flu and covid vaccines together! I am having the vaccine next Monday but I am prepared for that. I guess what upset me most was when a friend asked about all the tests I had had and when I said that thankfully they were negative she said, 'So, in other words there is nothing wrong, your doctor will probably tell you your symptoms are psychosomatic.' I was so crushed i couldn't even reply.
So here I am offloading to people who have more than enough to cope with and I am so sorry for that,but it helps just to get it off my chest. I would be interested to hear though, if anybody else has had reactions to vaccines? It isn't unbearable and takes a few days to clear but again I am sure 'normals' think I am exaggerating!
Thanks for listening.
Written by
kazatron
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I am so sorry to hear about the unfair behaviour of people around you. It must be very tough. It was the same I experienced at the begininning of my fibro situation. I often heard things like: "just go to the gym and it will be better" or "a lot of people feel like you" etc. Just few people are in fact aware of my problem because I hate to cope with scepticism or to justify myself. Things went a little bit better after my first and my second diagnosis from 2 different doctors in 2 different countries, but it took a long time. Regarding the jabs, I reacted very badly to one of the covid shots (I don't remember if it was the 2nd or the 3rd), it was similar to having covid itself, plus swallen and painful glands. So I can completely understand what you mean. I didn't have any other vaccinations after those and I have covid right now, so I don't think I will have another one for a while. I hope it helps. Take care!
Bless you thanks for your speedy response! Yes I think it's tough when friends think after such a long time the condition should have gone! But hey, I think my strategy will be just to be dishonest and say I'm fine from now on!! Of course we all know it is wise to be checked in case there is anything lurking but I just won't share so much now! I know I had quite a severe response to Astra Zenica but Pfiezer seemed to be much better, Moderna this time so who knows! I had never had reaction to flu jab before though, still feeling pretty ropey but getting there. Still better than the alternative right? Thanks again, best wishes.x
I also had Covid back in March and it took a couple of weeks to recover, but I feel I cant risk going without vaccine. I lost my sister at the very beginning of the pandemic and witnessing what the family has been through is just awful. So staying strong as I can as she would want me to is my aim! Stay strong xx
I am so sorry to hear about your loss.😔 I feel very lucky because this is the first Covid for me and I have already the 3 vaccinations, and atm it is not too bad. I think for a certain extent we are stronger because we are used to be in pain all the time.
Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Is unfortunate that we live in a society where people seem to think that you can only have a health condition of there is a test to prove it.
An example that you can use to explain that a condition can be real without a test is migraine. There is no test for migraine and diagnosis is made from the patients description of symptoms - but noone says that you are psychosomatic if you suffer from migraines
Re vaccines - it varies, some people experiencereactions others don't (same as people without fibro)
Hi and thank you. I think I was just surprised to have a reaction to the flu jab as i have been having that for the past 10 years with no symptoms ,but yes it varies a lot with the covid vaccine!
yes myself and the flu jab do not get on, in fact not had the flu vaccine in
years
not had flu due to hibernation. flu season is in winter, its cold in winter, cold makes pain worse, home is where will stay.😉
I did get flu 6 hours after visiting the docs, that year had flu jab!.🤔
first A Z covid vaccine was 2 weeks in bed and another week to recover, the next az was the same, the booster of moderna.. was better although felt lousy after been assaulted from behind by the nurse grabbing shoulders. I guess she and the 30 folks in room did not expect to make me scream so loud.
ah yes the 'you look so well',
we are trying to look normal although all want to do is scream due to the pain and discomfort, fatigue, brain fog,
as fibro folks we tend put others first and end up paying for it.
best just to say 'oh you know' humph,
and leave it there.
they try to ask again and you just smile with a knowing look. no dishonesty is needed.
no need to tell them anything.
so sorry to hear lost your sister sending condolences to you and family.
Hi and thanks for your reply🙏Sorry bit slow, I still seem to be feeling ropey after flu jab but who knows it may be another virus😦 ! I hope like you the Moderna vaccine isn't too intrusive but gotta be done right? Take care x
It's good to get things off your chest, and on this site you will be heard by many sympathetic ears, so don't worry about venting on here. I am sorry to hear the reaction of your friend, that's probably down to ignorance about Fibro. Sorry to hear you felt so ill after your flu jab. I had my Covid booster a couple of weeks ago, so did my husband, and neither of us were ill after it, just a slight soreness in the arm when raised or laying on it. As for the flu jab we are both having it on Saturday, so fingers crossed 🤞 we will be OK. Hope you won't have a reaction to the Covid jab.
Its fine....unload! I too seem to make peoples eyes glaze over. I've had this 10years too and it still shocks me how my body reacts to outside influences. I dosnt think I'll have the COVID and flu jabs together now !!! Take it easy sweetheart xx
Thank you😊 it is so lovely to have words of support ( I don't know why i didn't join sooner!) It is annoying how every one reacts differently isn't it? I heard today of a few people (non fibro) who have had a flu type virus so maybe I picked that up as well! Hey ho and on it goes! Keep smiling🙏xx
Hello, getting that reaction from friend 🫤really sometimes if they engaged the brain before the words came out, I wish I could let these people walk in our shoes for a month to actually realise, it’s okay too vent here, we certainly need too do this sometimes for sure. My booster made me very sleepy the next day and soreness went off on. Couple of days,my husband who has no conditions as such was sleeping for about 5 days on and off with fatigue . He was told not too have the flu jab in the same arm for 9 weeks at the surgery . I know people that do react with either Flu or Covid jabs and have felt poorly after that don’t have Fibro. Try pace and take it easy , I was completely knocked after catching Covid this year and took me around 3 weeks to kick in more. Had my booster and waiting for my flu jab now. Take care ignore silly comments, we get it here xx
Thank you so much, all this advice is really helping! Sometimes it just takes a few words to put it all into perspective! I very rarely take comments from friends to heart because I know its a difficult condition to get your head round, so I must have been on a real low that day. I wonder if anyone has found that low Vitamin D levels affect them? I am about to have bloods done and as they have been low before I wondered if I should request a D test? I hope all goes well with your flu jab🙏xx
Sorry to meet you on this forum but we are united to support each if at all possible???
I suffer all the hidden aches/buzzing pain+fatigue with a few extras thrown in! I feel v disadvantaged with it all and recognise the glazed look from others! I now just reply 'up+down' unless I've bn bedridden or hv had a new diagnosis!
No one really understands apart from fellow sufferers. It's a lonely existence although I try and get involved outside the home when my body allows...
I hv both vaccines booked in November but last year I was completely devestated by one of them! Not sure which but I was 3months out of action over winter! This yr I am planning to empty my diary after each one+keep to a rigid self care programme.
I don't medicate but adopt a new style of living using rest, heat+nutrition. It's sensible but not without flares when I've done something a bit adventurous like type an email!!!
Really good to meet you and I am sorry to read abt yr friend's reaction. It's wounding isn't it? Ive lost quite a few folk from my world who don't want to understand... Bt then u meet new folk who do! It's a rollercoaster isn't it???
Bless you and thank you! The up and down response is a good one and pretty accurate! Like you I try to pace myself so that i can at least do some 'normal' things. I am also aware that some unfortunate souls can have this condition more severely than others, so any good spells are such a bonus for me. I don't medicate either as I feel the reactions are too much to cope with, although I have resorted to a few paracetamol these past few days as the bone and muscle pain has been pretty bad. My hot water bottle is my best friend😊. I am having my booster on Monday and have prepared a free diary, and lots of soup in the freezer but it would be just amazing if the reaction wasn't too bad! Hope all goes well with your vaccines and thanks again.xx
I got back from holiday on Monday. V pleased w my walking progress+dealing with v sore leg muscles some days aftr too much walking. It really was a splendid break in SW. Kept all meals easy w frequent supermarket trips. It was such a success...
Realise I must kp it easy this wk but 2day hd the most awful migraine for hrs on end!
Might hv bn long hour talking to the Pain Clinic team &/or trying to cope w/out heating???Only put washing on y'day not rlly a big deal is it? Plus prepared simple supper! Today I've only managed a bath and emptying my toilet bag full of emergency meds!!! It will be a v long time b4 my clothes get put away...maybe next wk?
Pacing is the name of the game but it's not great for morale when stuff is strewed everywhere+no energy to put away or clean...
Hope u don't mind me replying Kazatron? Thought you'd understand the pacing after over activity with real examples??? X
So glad you had a good break! I was a very keen walker for quite a few years and have tried to keep up some sort of simplified routine but like you the minute I get carried away I pay for it! Getting out in the air and connecting with nature has been my saving grace mentally and physically so sometimes having rest days is well worth it! It doesn't help that I am a bit of a neat freak as well so get very frustrated when I have to choose what is most important! Good to hear from you. Take carexx
Thank you. I had my pneumonia jab a few years back so it is good not to have that repeated at least! I have arranged to meet with my friend next week so that i can explain why I was upset and hopefully all will be ok. I think when we are low things hit us much harder than we realise! We lose so much it would be a shame to have to lose friendships as well. I can only try! Take care xx
I'm having my flu/covid vaccine next week so wish me luck I was was diagnosed with the beast that is Fibromyalgia last month My symptoms have been slowly getting worsre The first jab I was fine with but I wasnt having many Fibro symptons, the second I felt a bit rough and the booster I was knocked off for 3 days I didnt equate that it could react with the Fibro because I didnt know I had it Like you I've taken in to account I'll be rough when I've had the jab Sorry you're friend was thoughtless It's not helpful x
Hello and thank you! We have a lot to adjust to with this condition but the past 2/3 years have been pretty hard to cope with. I wasn't expecting such an amazing response on here but it already helps to know we support each other! Also, perhaps I should have answered to everyone in one response 🙃 but really appreciate all the individual advice. Take care!xx
Hi Kazatron. I know what you mean. People think if you look ok you are ok. They’ve no idea how fibromyalgia feels. I’ve been tempted to lie and say I’ve got MS, but that would be wrong. Most people know about MS. I had a massage today, back and shoulders. I asked her to do my legs for the first time. They feel so much better! I had both flu and covid vaccines today. I’ll let you know how I go later. You offload on here any time. We understand because we know how it affects us all. Take care 😘
Spot on Penthouse13. There is a book that apparently is very helpful called You don’t look sick by Bette Brown I’ve just ordered it and I’m sure that it will agree with what we all feel x
Thank you and sorry for slow response but still been a bit ropey! Trying to reply to everyone because I have been really touched by all the comments and support!🙏 I was convinced for a long time that I did have MS as my balance can be so badly affected but thankfully we found that it was BPPV which I get fast track treatment for when it happens. How have you responded to your vaccines? I do hope you are being gentle with yourself and taking it easy!xx
HI Kazatron. I’m doing ok after the vaccines. Got them both in my right arm. I hope you’re feeling a bit better today. My balance is bad some days, I think that’s due to the fibromyalgia. The massage helped with that , but back feels worse! Sorry I don’t know what BPPV is. Excuse my ignorance. It’s good to discuss with everyone, it really helps xx
Hi Penthouse, Sorry😊BPPV: Benign Paroxysmal Positional Vertigo! It is a very common cause of balance issues, basically the crystals in the inner ear move out of position causing severe spinning vertigo .It is very unpleasant but thankfully if I get it really badly I can go to St Georges and the therapists there perform the Epley maneuver and they can usually settle it within a couple of weeks. Its not serious but really scary when I first had it but of course now as with most things its just part of me and I can usually judge when an episode might be starting up. Really pleased to hear you are coping after the vaccines, I am feeling better today although still a bit achey so maybe I already had something brewing before I had the flu vaccine. I did a covid test this morning to be on the safe side which was negative. Every cloud and all that! Take care xx
It's not just you. I can't -- correction, won't -- get a flu vaccine. Three out of three times I got the flu from the vaccine. The doctors say it can't happen; just a minor reaction. My family says it's important to go get the shot.
It's not a coincidence. The only time I've had the flu in decades was immediately after the vaccines. After, I was so sick in bed I couldn't take care of myself.
I know I haven't imagined it. It's way beyond coincidence. Why do I only hear "It's not possible" from the professionals? Makes me angry and scared.
Hi, I really feel your frustration and fear of the unknown is natural. From my own experience I personally found that having the vaccines, while not pleasant are marginally better than having the full blown virus. I wasn't well with the Az vaccine and it really hit me hard but when i had actual Covid it was honestly a lot worse. I also think that our pain receptors are wired differently to other people, so everything feels more intense. I just want to keep out of hospital. It really is a personal choice but I would hate my family to go through another loss if i can prevent it. Your family are obviously concerned for you too but ultimately it is your choice🙏 Stay safe and take care xx
I just realized you thought I was objecting to the Covid vaccine. It was several years of flu vaccines I got sick from. I have gotten my Covid vaccines without bad problems.
No honestly didn't think you were objecting to vaccine ( sorry things sometimes get misunderstood with the written word!) I thought maybe you were concerned about having vaccines generally after your reaction to flu jabs. Everything is such a gamble isn't it? I had my Covid Booster on Monday, it was Pfeizer which I thought would be fine as I have had that before with very little reaction....but I have felt pretty awful since, I was only just recovering from the flu vaccine as well! It felt like a full blown fibro flare up with all the bells and whistles! Today is the first full day out of bed but I have really sore neck, fuzzy head and runny nose. I wonder if the fact that protection from the Omicron variant is included this time makes any difference. Anyway, all done now so just have to wait for everything to subside! Doing all the usual things like keeping warm, drinking lots of fluids and keeping moving, I try and walk around the flat every half hour but I am hoping to actually get out for some fresh air tomorrow as I know how that usually helps. My gp has asked me to go in for Vit D and B12 blood tests on Tuesday . I hope you are coping well, take care!
hi. Just joined here. Sorry people are not being supportive of your condition. Just wondering if UTI are part of the condition. I have never had this problem till about a year ago. I have had 4 since then
Hya, sorry quite a delayed response! I too have had a spate of UTIs and in fact the last round of investigations were to rule out anything sinister and thank goodness were clear. However, no one could tell me if it could be linked to Fibro., other than if your system is run down you are more prone to pick these things up🤔. Its a mystery to me how we do seem to manage to get everything under the sun! Hope your'e doing ok🙏 you take care xx
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