It’s a good three years since I had the sort of horrible flare that’s recently stopped me in my tracks. It may be as a result of Covid 9 weeks ago which has left me very fatigued, slightly dizzy and off balance but needless to say I have tried to carry on doing all the things I need to do - big garden, creosoting fences, general life stuff - as we do. Last week my joints blew up, everything hurts, was felled with tiredness and felt as if all my energy was draining out through the bottom of my painful feet. I’m tearful (very), just want to sleep and can’t concentrate on anything.
Rheumatology has upped my steroids from 7.5 mgs to 10 mgs per day and are planning on changing my Baricitinib to Tociluzimab next month. What I really want to know from all the seasoned old-timers on here is is that how you too feel with a bad flare? It’s really taken me by surprise that I feel so rotten and I’ve had RA for over 30 years. Thanks so much, I know I’ll get reassurance on here!
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Amnesiac3637
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Yes! I like that today . I was working as a swimming official at the new commonwealth pool yesterday. I knew I shouldn’t but it was a once in a lifetime experience. Pay back today I have all your symptoms listed. Life’s a B****r at times. X
I often feel like that due to hypogammaglobulinemia/low immunoglobulins. I recall flares making me feel wiped out too when RA was uncontrolled. Sounds like your rheumy is changing your med that it’s not holding the RA/RD back and why you could be feeling so tired but you have been very active doing lots of things too. I hope the change in RA med works well for you and you will feel less tired once that happens, but for now I hope the steroid increase will tide you over.
Yes I feel the same-exhausted easily , can just about manage a 20 minute walk, my legs are aching most of the time, my knees and ankles painful. I've been feeling light headed and dizzy too. I had covid at the end of March and have been like it since then. It could be coincidence of course, but my RA was so well controlled up to now and I haven't been like this for a very long time .
So sorry you feel the same but it’s so reassuring to know I’m not the only one and particularly after having Covid. I too have been so well controlled but since Covid at the end of February I’ve felt like my batteries have been running down, my head’s been muzzy for a lot of the day and I’ve had trouble doing ordinary tasks like getting clothes on and off! The slight dizziness is horrible and it comes to nothing - just makes me feel odd - but the general lack of energy is so unlike me for so long. Let’s hope we both clear this and it is a combination of post viral covid and the RA being stirred up. Let me know how you get on and I’ll do the same. X
I'd heard that covid might aggravate autoimmune conditions but who knows🤔 Tbh I haven't felt right since I started having the jabs a year ago- I'm not complaining, I'm glad I did - but I think my immune system's had a lot to deal with 🤗I'm resting in my bed at the moment - just a short trip to the supermarket has worn me out .
Yes it probably doesn't know what to do 😁 Thank you for your kind wishes. Take care x
It’s very upsetting. I prescribe a week in bed with Val McDermid. Or a week on the sofa with some boxsets. Ready meals if you aren’t up to cooking, or as many nutrients as possible if you are. Crank up the central heating and put on your pjs. Wet wipes are great if you are too poorly to wash x
Oh thanks for the suggestions 🥰 For the first time in years I have come to a dead stop with this and have had enough sense (for today at least….)not to do anything. Have watched ‘Father of the Bride’, read bits of good book and fallen asleep twice. Extra steroids are just starting to have an effect on my hands which look less like sausages and I’m resisting going off to do things for the rest of the day. Haven’t sat and watched tele in the daytime for ever so there must be something wrong! Must be sensible now for the next few days because I don’t want to have this happen again - it’s vile.
I had Covid last August followed by another virus in October & a nasty chest infection in November & have felt like this since then. My GP hasn’t seen me but spoke once on the phone. I’ve been in bed mostly for past 5 months. GP said probably post viral fatigue just takes time. He prescribed Prednisolone for 7 days! I saw my Rheumatologist a few weeks ago who took it much more seriously & is sending me for full body CT’s prior to a referral to Long Covid Clinic. Thank god someone is listening to me at last. It’s like someone just pulled the plug out. I go from being ok ish to zero as soon as I try to do anything. Trying to do any cognitive work is a nightmare like my brain just won’t work. I think it’s fatigue from Covid & we have to learn to pace ourselves ( something I’m not good at) till our bodies recover. Try to rest & hope you start to feel a lot better soon x
You poor soul. That sounds really rough and being in bed for five months is no joke. I think this is likely to hit more of us following Covid and I certainly know what you mean when you say you’re ok-ish and then not after small exertion. I’ve been the same and so have others. It’s just like your batteries are running down and you’re wiped out very quickly. My favourite place is my warm bed at about 9.00 p.m and I sleep like a log for hours but am not refreshed when I get up. My head is full of cotton wool and woozy most of the day. Definitely struggling at the moment but I too have a fabulous rheumatology team and am hoping they’ll be able to sort me out. I do feel for you and I hope they can help you at the Long Covid Clinic and you get your life back very soon.
Bless you. I really hope Rheumy can help you too. My Rheumy consultant this time was one I’ve seen in the past & was lovely that day. She’s sometimes a bit abrupt but very proactive. I’ve managed to be in the sofa too not totally in bed but hubby’s been great attempting cooking ironing & everything else. He’s my rock. He drives me to all my appointments too. It was such a relief to be actually listened to at Rheumy even if there’s not much they can do. I’m guessing it’s down to time & pacing. Apparently they need to do scans first to fit the criteria so at least I’m getting an MOT. I really hope you get your life back too x
I have felt very unwell, exhausted, pain everywhere & can’t even walk more than a few steps since I was in hospital for a month last summer. My husband even has to dress & undress me. I was rushed into hospital with a paralysed leg in August & it was also found that I had urinary retention & I had to wear a catheter for 7 weeks. I then got a nasty chest infection as well. Before I was taken in I was walking about the house ok ( I couldn’t manage a walk outside). Back home I need a walker to be able to walk about & I am not improving. My rheumatologist hasn’t helped & just added Leflulamide tomy Mtx. I am now having a bad flare of restless & jerking legs & feel like I am going mad with it. I rang the doctors on Friday & spoke to one I have never come across before. She said I was on the highest dose of Pramipexole for restless legs that I could be. She offered to put me on some tablets that I once had & they made me very ill so I said no. She then said she would give me a muscle relaxer. When my husband collected them there were just 5 tablets of only 2mg so not much help there. I hope you can get some help but I seriously wonder if doctors are any help at all these days. Xxx
It's often been the exhaustion, feeling off balance and generally unwell that has heralded my flares. Stupidly (I don't learn!) I wonder what is wrong with me, have I picked up a bug...then suddenly wham, my joints are bursting with pain.
Hello. I had Covid at the beginning of March and took the Antiviral Paxlovid. I have found myself completely wiped out with my inflammatory markers rising rapidly. Associated joint pain, swelling, fatigue, dizziness and being slightly off balance is only now beginning to improve slightly. I have been told by GP and Consultant that these symptoms are all connected to Covid. Today is my first day of feeling some improvement and hopefully you will feel better soon too. My best wishes to you.
Hi Skyeblue2. That’s what’s happened to me. Covid in February, Paxlovid within two days of PCR being positive and since then have exactly as you’re describing. Others are now starting to say the same so it looks like some of us are unfortunate enough to have to contend with yet another set of symptoms connected to our badly behaving immune systems. I’ve just had my steroids increased so am less painful but still wiped out and slightly off balance. It is very reassuring that I’m not the only one with this and really hope you and I and everyone else on this post improves sooner rather than later! My best wishes to you.
Glad you’re feeling better and hope you now make a full recovery. I am still feeling wiped out but have given myself a good talking to about resting properly and being sensible……..🙄
Had massive flare at the weekend, in my neck, and left hip. Desperate to see my rheumatologist, hopefully next week with a face to face consultation. On methotrexate and was taken off anti inflammatories following heart attack last year.RA is a horrible disease
Well, I had Covid about 9 weeks ago and GEEZ, I am tired seems all the time (I am flaring right now though too). Let's just blame Covid, use the time to get some extra ZZZZ's and HOPE it goes away soon!
I LIKE that description. I always said when asked that I felt like being run over by a Tractor Trailor Truck while walking home from a doctor's visit while having the flu!😉
Yes COVID took me down properly. Tried to go back to work 4 weeks later as was feeling a bit better but then hit a wall of exhaustion, flare, dizziness, fogginess the whole chabang! As you say upped steroids, change of biologic pending. Nearly 6 months after contracting COVID am still not back to normal and still in pain, flaring, exhausted and off work.Hope you are back on it soon. Perhaps pushed myself too soon?? Really scuppered and not sure job will survive this! 😱😶🌫️
What a nightmare for all of us who’ve got this and particularly if you’ve got to try to hold down a job when you run out of sick pay! So sorry for you because at least I’m retired and haven’t got to do anything other than normal house/garden and general life stuff. I remember having to calculate sick leave and all that when I was in the NHS - even with an understanding employer and good sick leave and pay it was scary when I was flaring a lot. At least then you could be helped with medication but I’m not sure about this.
It’s so unpredictable that when you feel suddenly better and do things you get absolutely clobbered with what you’ve described and I’ve got too. It’s my head wooziness which I hate most but am sure that’s caused by this extreme fatigue as I had my head read (CT ) last year and there’s nothing wrong in it!
I spoke to rheumatology today and they confirmed that RA fatigue (always present) plus post viral fatigue is a perfect storm. Doesn’t help much! I guess we’ll just have to get through it and hope that as it’s getting much more recognition there may be a solution before we all feel as if we’re going mad and curl up in a ball……..
I know I pushed myself too hard after I had Covid - big painting project, huge garden - and I never learn to stop when I’ve had enough so I hope anyone reading this will take a lesson not to overdo it and thereby save themselves from this latest horror. Very best wishes to you, hope new meds and raised steroids work and fingers crossed you get better soon.
Thanks 😊 To be honest have got to the point am ready to take early retirement myself. Am so tired of it all! Summer is coming- just trying to keep counting my “reasons to be cheerful” xx😘
Not easy while you’re going through this but on a lighter note if you can afford to take early retirement don’t hesitate - and enjoy the Summer work and worry free! X
Wanted to add an up to dated reply . Thank you for your advice. I “Early retired” from teaching last September, so am a year in and have another new hip in place and a smile on my face.
Best decision ever- husband is working more hours and I have a small pension. In the next year I will find a small job- maybe 10 hours a week to boost it and keep car on the road.
Oh fab! 😀 Good to hear from you and so glad things have worked out so well. You’ll never regret that decision.
I’m doing ok thanks - the usual hiccoughs along the way but there’s many who are far worse. Am off on a cruise to the Med next week, my first holiday for years so can’t wait and shall come back a new woman! All the very best to you. Xx
“Afford” is an interesting concept but I think my bones are at risk if I do not make a change. It sure I have a choice. I hope there will be less stressful jobs than teaching 5 year olds! 😅 This combined with early retirement ( and new hip) should help us survive. 🤞 😆
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