Last year I tested positive for Covid 19. This hit me with a super force, it has been a 7 month battle and the dark times were more frightening than I wish to go into. In this my doctor tested my blood and lupus came into the equation.
My family and I were startled by this list of ailments and symptoms of lupus which before 2 days ago I’d never known. I ticked every box and had experienced almost everything in the last 20 years, I’d ignored some, been given wrong diagnoses for others and some I thought were how everyone feels (I am a real tough cookie).
Throughout this I’ve had some great care and have had pulmonary rehab, speech therapy and physio, all of which have helped to build me up a little and build a picture. But I am currently Plateauing at feeling pretty rubbish, every joint hurts, my teeth and I feel like someone has taken out every organ blown it up and shoved them back in, I hurt, I ache and it feels like I’ve elastic band round me restricting my breathing as I just have no room for a big breath.
So lupus gets thrown in among long Covid and I described it to my husband like this... each symptom/ailment is an instrument playing, for 20& years they’ve come and played solo, we’ve even at times had a quartet, but right now the whole orchestra is playing and they’ve invited their friends long Covid who are the local brass band!
This is all new to me, it’s overwhelming, relief in some ways that this may not be “ the new me” when I’m on the correct pathway. But does anyone feel this way or have felt this way?
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Gingernotwhinger
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I’m so sorry you had so much to deal with! Yes and yes to everything you said. I have been so low from dealing with the pain, the roulette “ What will it be today when I wake up?” I went from being a fitness instructor to being unable squeeze a shampoo bottle or turn my car steering wheel. I can’t believe the healing work your body has done to recover from COVID on top of being ill with Lupus. I do understand what your saying. I was diagnosed with Lyme disease after suffering for 12 years. I thought I was going crazy, mental, physical ailments and lost years of my life. Don’t know which came first, Lyme or UCTD, but the ongoing symptoms and flares are something we have to accept may be with us for a long time.
When you feel good.... grab on and live! My prob is when I do feel good... I do too much then pay for it on the backend. So learning moderation is a process. Especially knowing what you’ve been through with COVID, you may have reoccurring ailments that pop up as I do with my Lyme and lupus symptoms. I had to let go of my ego of returning to my former fitness instructor self because I can’t predict nor control the flares. So now I have time to invest in my oil painting and other creative endeavors which I always put on the back burner.
If you have access to infra red sauna, it may be beneficial. it has really helped me get through some bad flares or when I’m just feeling wiped out.
You will receive wonderful advise and support from knowledgeable people in this group.
Thank you so much for your reply, it’s been a tough morning and it made me cry.I went back to work after 6 months (I’m a secondary school teacher and I love my school and wanted to be back for my mental health). It’s been tough and I’ve struggled, hid things and lived to work, ending up in bed by 4pm on most days.
I had my second Covid vaccine Wednesday evening and on top of the long Covid and this diagnosis where I thought the door would immediately open to a new life I’m left frustrated feeling like a brat because I want everything sorted ‘right now’, I crashed and burnt and was sent home yesterday after just 20 minutes. This week has been an odd one and the good lord thought this wasn’t enough, that I needed hormones and lady days thrown in just so I could sit and feel sorry for myself. I think I just need to put my big girl pants on this week and stop feeling sorry for myself x
The best treatment I have had to live well with lupus, aps and stroke disabilities was to see a therapist for ptsd treatment and anxiety counseling using mindful based, acceptance and commitment cbt and EMDR techniques. I am happier and calmer than I have ever been in spite of permanent aphasia and right sided weakness and post stroke centralized pain.
Accepting this is now my life has allowed me to live well in spite of the disease.
I interviewed and took a job in a kindergarten two weeks after getting out of an icu after years of being a stay at home mom. This actually was the best thing for me. I do better when active than when I take it easy.
Hospitals and doctors no longer advocate to rest they now believe being as active as you are able helps expedite healing and regulates the immune system. Walk everyday for it helps . Start with small short but frequent walks and build from there.
That is inspirational and really does help me, I’m not one to back down, I’m up for a fight.
I have to be active, my mental health is really bad when not.
Friends have said in the past I have ADHD, I have a need to be doing something or that is when the mischief kicks in. In fact this bout of illness has given my closest friends a break for a while with some of my random antics I’ve tortured them with over the years having ceased for a while.
Me and peace have never been put together, I’m a fire cracker and want that back.
X
I like your description and emphasise completely! Bring in the triangle 🎶
Hi! I read your post with a lot of interest because I think I am in exactly the same situation as you, if I have read and understood your post correctly. I caught Covid at Christmas and that seemed to turn into long Covid. I got desperate at the beginning of March with ongoing weird symptoms that weren't getting any better. My GP tested me for all autoimmune diseases and I tested positive for ANA and antidsdna - lupus!
Like you said, this is all a big shock and like you, I had had various funny symptoms come and go for years. I did try going to the GP for each individual thing but they came and went, got better, got worse, and I have learned to live with them and carry on. For me these things were joint pains, very dry sore eyes, and issues with my inner ears. I am also ridiculously sensitive to the sun. So I believe that Covid came along and has revved up the immune system and caused a flare of this disease - Lupus - that I didn't even know I had. The whole darned orchestra!
I am still waiting to see a specialist and start treatment so right now I am "raw" and struggling. Hopefully it will get better once there's a plan and some medication in place.
My job was in a nursery and it is too physical for me to do at the moment. I took several weeks off and I am now in the nursery office helping with the admin. It's easier on the body than hefting toddlers around.
I too have been feeling pretty sorry for myself. Actually, I think that's quite normal and that we shouldn't beat ourselves up for feeling that way. I hope you get to see someone soon and can start to get some treatment soon.
Anyway, I just thought I'd tell you my story so that you know that you're not alone. We will get there I am sure. x
Wowser! I’m not alone and in a pandemic it’s been so hard! I got Covid back in September , 3 weeks into the new term, I thought I’d do the 2 weeks and be back on my feet but it snowballed. They tried to send an ambulance on 2 occasions but I refused to go. I know this sounds stupid but I have lost too many relatives at that hospital and my husband and I made a choice that I’d remain at home and if and when the time came I’d not die alone, he’d be with me. He sat awake for nights until the worst seem to pass, the hospital dropped drugs, steroids, inhalers etc and for 19 days I rarely woke only to eat. I sat to write letters to my children thinking I’d not see my daughter married this year, not be there when my youngest finally waved the rainbow flag ( she since has thankfully 🏳️🌈) I was going to miss everything I’d built my ladies up to be. When I did and the pain increased I was sent to a Covid unit and straight to hospital on several occasions. I begged for help. 5 months without leaving the house took its toll and in the midst of this my GP practice was shut down. I moved to a new surgery and by Christ things changed rapidly.
The doctor sent for blood tests and this double stranded DNA wAs there??? The pulmonary rehab team were put in place and had also been building a picture, taking pictures and my vitals for 7 weeks and behind the scenes the Covid MDT were building the lupus picture.
Oblivious to this I was sent on Monday to rheumatology- stupidity I didn’t know what her roll really was and answered questions about what’s happening at present. Now I had a breast reduction 2 years ago as the pain, nerve damage and inflammation I suffered the old GP said was due to them, when this continued I was told the pain pathways had remained. 20 or so signs were missed and I understand this is normal, I’m ginger so I thought the rashes were normal (though I have seen a doc about them). I thought I was unlucky to have chicken pox/ shingles 4x. I thought martial arts had knackered my hands, wrist and joints and my Nan suffered like this so I assumed it was normal, I thought cold sores, mouth ulcers and thrush on a constant loop was fine as I could just purchase something over the counter. I thought going numb was my b12, anemia was because of periods and honesty the list goes on and on. I thought blow outs and pain was from working too hard I explained away everything until well I just couldn’t.
I never went through anything with rheumatology so today my task is a spreadsheet in preparation now I’ve sat with the rehab team, now I’ve spoken to the hospital and the Covid team who sorted my care, now as a family we have researched and wrote notes. I thought a golden doorway would open yesterday and the medication would be there and like Verruca salt - I want it now! But I guess like you I have to wait, so I’m frustrated . I want to be let at it so I can try and kick it’s arse as Covid was like fighting ghosts.
You’ve made me feel so much better. And I hope we can start to feel better soon.
I am sorry for my ramblings, it’s been cathartic in some ways, that and I’m not going to lie I’m probably high on pain relief 😂 x
I'm so glad that you feel less alone. You have had a horrific time, haven't you? It sounds like your Covid was way worse than mine. I really admire your determination to get better - a spreadsheet! (My hubby loves a spreadsheet!) 🤗
The taste and smell I forgot that! I complained as my taste is still off, my love for Diet Coke ( which I drank silly amounts off) was once my fuel, now bloody well tastes of it, what about a cheeky Malibu and coke? what will I do without my”Mmm Fridays” ( music, Malibu and mates). I’ve always been determined, nothing in life has come easy and my kick ass ways have always stood me in good stead, I’m hoping this will help me ( please don’t burst my bubble just yet!) x
I’ve got you missy, scream and shout, I’m a good listener x
Hi DuranieGirl, I also have long Covid with Lupus. from November. Would you mind sharing some of the symptoms you have or have had? I feel isolated not knowing others in the same situation and my doctors have no answers as to what is what.
I do think you are absolutely right about Covid revving up your immune system. It becomes a new trigger for setting off autoimmune issues.
Hi Pumpkin 2009. My actual Covid experience was fairly uneventful to be honest. Initially I just thought I was knackered because it was the end of term (another one of us in education!) and I also thought maybe I was hungover that weekend from too many celebratory end of term/Christmas holiday cocktails!! Then I found out that two children at nursery had tested positive. I had a tiny cough, really nothing much. I got tested, it was positive. I was tired, headachey, coughing a little, had achey muscles and felt a bit sick. I lost my sense of taste and everything smelt like burnt coffee. I just looked after myself at home and took paracetamol. After a couple of weeks I still felt tired and headachey and still coughing.
I had one extra week off work and then went back. I was working full time in the baby and toddler room at nursery. By Thursday/Friday I was struggling badly. Absolutely knackered, dizzy/spacey, breathless/coughing, headaches and just generally feeling horrible. I made it through the week and then spent the weekend on the sofa! I then had six weeks off work and spoke to doctors who all said it was post-Covid. Sometime around the end of January, both my elbows became incredibly painful and an old wrist pain got much worse again. I started to feel even more dizzy. And my dry eye condition flared up really badly. The doctors found that I was anemic and my thyroid was underactive. So now, I still smell smoke but that's the only real long Covid symptom. My joints, dizziness (now joined by tinnitus!) and eyes are still really bad, plus I get exhausted easily. Funny how what I now believe are lupus sumptoms all came on about a month after the Covid. Interestingly, I had my first dose of the vaccine two weeks ago and it seemed to make me worse. Maybe because it stimulated my immune system again?
I was lucky that I had a clever GP who said we musn't blame everything on long Covid so he did lots of blood tests.
I can see why people with lupus would have been advised to shield. Covid seems to cause big flares.
Hi and welcome to the group, it sounds like you have been to hell and back these past months and I’m really sorry you’ve had to deal with Covid and now all your other symptoms- once you get to see a rheumatologist I suspect you will be put on medication that will ease your symptoms and help you - I sadly had to give up my job about 5 years ago, I went from being super active to literally every joint in my body hurting and me just having to rest - I suffer like many of us on her with extreme fatigue and my advice to you is please if you are feeling exhausted you must rest , I have learnt the hard way and kept pushing through the fatigue but all it did was send me into a massive flaire up - I’m just wondering weather you could maybe go back to work on a part time basis whilst your feeling so ill at the moment- sending hugs 🤗 💕
Thank you, and why does every reply turn a hard woman like me to a crying mess?I’m sorry to hear you are having/ have had such a hard time.
I love my job, I work with students I adore, the monkeys, the ones that other staff hate to teach , the vulnerable and the bloody annoying, they love me and they do for me what they do for very few, they need me as much as I need them. They accept me in bright pink slippers when the nerve damage is killing me, they don’t realise that when I’m teaching and I’m saying ‘what’s the word, I’m thinking” isn’t me testing them it’s them reminding me as the brain fog is craaaazzzy right now. I feel normal and I feel like the old me there. I don’t feel scared and vulnerable, I feel like I used to immortal.
I know it’s naive and I hope when I’m on the right path I’ll spring back to being me. But on top of that I like a good wage, I killed myself with 2 young children to get 2 degrees to enable us to have a decent life and it feels like all that would have been for nothing if I give in.
The fatigue is hard, some days I live to work and hit the bed at 4pm waking only when my husband, best friend and as I’ve come to realise my angel ( I should stop calling him my b***h but it’s how we get by, by laughing) brings me food and medication. 7pm has become the new midnight and 9, well bloody hell that’s practically an all nighter!
I think I just have to take each week as it comes and maybe find faith? X
Gingernotwhinger, I love how you describe you job. It is so obvious you love your students and are dedicated. 25 years ago, I was a teacher of students with learning disabilities. Most of my kids were very bright with some kind of learning problems. Some were emotionally scarred from family issues. Most of the other teachers had little understanding or compassion for my kids which is very sad to say. I was very attached and wanted to somehow make a difference. Then I got sick and diagnosed with lupus. I could no longer teach and went through some difficult and dark days that I remember quite well. I think your approach of just taking it each week is a good one. Just remember, that you have already touched young lives and are such a valuable and important person. Your students are so lucky to have you in their corner. My thoughts are definitely with you.
If you don't mind, I see you have long Covid. I got Covid in November and also have continuing issues. Do you mind telling me some of the symptoms you have? I am wondering if there is some correlation between what is already going on with our autoimmune system and then adding Covid.
Please take good care and don't be too hard on yourself. Every here is so knowledgeable and supportive. I wish I had had this sooner.
What lovely words! And so sad that children are missing out on you! Could you possibly volunteer? The whole list is extensive, rolling in and out (someone here said roulette which is what we called it too!) we are now unsure of what’s COVID 19 and the lupus. I’ll try to get them in some order. And I warn it’s going to be a big long one... I had a cough initially way before this started that I was told was reflux and I’d been going nowhere due to my dad having type 1 diabetes, my parents were shielding and so my husband picked up their shopping and I dropped it off so I could spend time with them. So when I started to get cold symptoms (which a sore throat and runny nose wasn’t on the list I didn’t think anything of it) then the aching hit, the tight chest, the vomiting, nose bleeds. So I tested - but I knew it was a positive, I honestly felt like I’d been run over. The chest pains, the inability to breath, my feet started to feel like they’d been flogged, my ankles hurt, spreading to every tiny bone in my feet so bad I struggled to walk to the toilet, not that I could unaided as I couldn’t breath. Someone had bound my chest every inch of me hurt from my eye lashes to my toe nails. The rashes then came, oddly just the waist down, bruising came not long after. Shakes, sweats, palpitations the resting heart rate at 150. My hands hurt, I couldn’t grip things. Then came the infections, my chest, weeing blood, so the kidneys came to play- it was like Pac-Man, then came pneumonia just in time for Christmas and pleurisy followed for new year. Honestly Craig David could have wrote lyrics with how fast they came in. I was hit with feeling like I’d been hit with cars of various sizes from an Austin princess to a Ford Fiesta depending on what was happening. I had the obvious cold sores, ulcers and I’d looked at antibiotics so of course we had 3 lots of thrush so my vagina felt like a puffa fish!
So I’m left feeling buggered, the fatigue is something else. The memory fog is ridiculous I had a breakdown at Easter when my grandaughter asked “what’s a boy chicken called nanny” - I could see it in my head, it’s neck dangling like an old scrotum, but what’s its name??? I ask my dad, as the tears are ready to fall and he says “cock” I was unsure if it was an insult but I had an answer!
The pain remains in all my muscles(the numbness in my arms and legs the drs said was b12 since I was 13 was back) and joints, my ankles have given way and I’ve landed in a heap at the bottom of the stairs. The pain feels like I’m still bound. Like where you see kids doing the melon challenge, elastic bands added until the top of the melon explodes, (I’m ready for my top half landing in the garden). As I’ve said previously I feel like my organs have been removed, blown up and filled before being rammed with force back in my small frame, I’m restricted, I can’t breath well and so with all this mobility is rubbish.
Oh but on the positive side the ears may hurt but the ear wax is unbelievable, yes it’s disgusting but I enjoyed cleaning out the huge chunks, it was my only pleasure in this at times!! ( sorry if your eating 😳).
Hi Ginger 🤗you're definitely not a whinger!! 😹U have a wicked sense of humour n that's a good thing coz you'll nuture that sense of humour on your journey!! 😉You're actually a bit of a pioneer for us..last year many of us were told to sheild coz were extremely clinically vulnerable!! It came as a huge shock n the first instructions were to stay inside..u can open a window but do not go outside!! 🤷😱
This site is fabulous for covid info as far as us lupies r concerned n we have been kept in the loop. One of the most interesting things that we've been discussing is how long covid is the same as Lupus!! We've all kinda got our fingers crossed that covid will help us in getting lupus more understood coz there's still a lot of ignorance n sometimes arrogance about lupus being all in our heads!! 😤
Interesting what u say about shingles too..I think that's when my lupus started n I've had it again since diagnosis in the same dam place!!
I will warn u that there r no quick fixes with this n u may have to adapt to a new normal but with support from your hubby n us u will find a way for sure 🤗
Warm welcome to u teach...I'm a bit of a monkey..n I'm not the only one!! 😉💜🌈😽😽Xx
I too can admit I up unto 3 days ago had no idea what this was, I’d heard it in passing, my mother and her “ you know Shirley at work, her daughters, fiancé’s hamster has lupus” I paid no attention (I’m sorry to you all, please forgive me!) but I’m trying to make it my mastermind topic and catch up quickly, pinky promise!
My hat comes off to you all, as tough as Covid has been I doubt if I’d have stayed sane indoors for this long. You’ve all done amazing, and wether or not you’ve bit hit by Covid it has effected every person to some degree and everyone has suffered in some way. I am a glass half full kind of girl and yep sometimes I’ve said it’s a big pile of sodding sand but in it, we’ve laughed, I mean what kind of numpty gives a woman jelly in bed when the shakes are so bad that it’s the only thing she can use to eat with is a spoon, of course it’s going to end up on every inch of the duvet!
I can look back with some relief to the real bad/scary times, but it’s left emotional scars and the once tough arsed woman can cry at just one look at a Labrador on toilet roll add or 1 bar of Kate bush and “this woman’s work”. It’s driving me mad, my face won’t stop leaking!!!
I’ve the amazing support from an amazing family, who are all bat shit crazy, but will hold me up if this is to continue to be as tough.
And you all with kind words and quick one liners have already in 24 hours made me feel like your rallying round with big warm emotional hugs xx❤️
Gosh really good to read this stream of thoughts & feelings...
I am hoping to get back to work that I love, but been off now for over a year battling cancer & lupus/sjogrens & been worried about getting covid & pleased too have escaped it so far (despite scares of roomies in hospital having it)...
Nice to feel well enough to jump back into this group again....lots to learn & kindness galore....
Wishing you well...my foggy brain is a good measure of late if I am too tired or under attack by my autoimmune....words are out there, nice to be able to finish a sentence without help....hug to all...ml
Hi, I can’t even begin to imagine where you’ve been to and how you feel, the old saying from granny B “there’s always someone worse off than you” springs to mind, so my thoughts are with you cocker! And in the words of D’ream - “things can only get better”.
I’m hoping my spewing of thoughts and feelings, barely censored at times isn’t too much, as I said yesterday- it’s felt good to off load. I can only apologise if my frankness and humour offends anyone, it’s me and how I deal with things.
Up until 3 days ago people sending texts in the midst of all this with “sending positive vibes” got right on my swingers, their vibes were ricocheting around greater Manchester side streets unable to reach me. But I actually get it now and I’d send anything -vibes, love, empathy, compassion and even a siding of humour and sarcasm to make anyone feeling this way feel slightly better.
My heart goes out to you sweetpea, you’re doing amazing x
Your doing great too...like your imagery & music choice....Like your writing & view of our world... Bonkers life we are leading.... My positive today or 'the bright side...' was to get 2 more plants planted today, water garden & looked with a long-term neighbour, at the mole hills in our small chapel cemetary...I lean towards convincing her to let the critters be as well as the beautiful array of wildflowers popping up right now...usually by now, a madman comes & mows them down till there is no evidence of them....
My neighbor knew most of the folks or families buried there....amazing local history...abit of a treat to walk slowly around with her today (she has walking problems from all her hard work & I just tired)...so all in all was thrilled to have a goid hour & share it with you 😀...have a lovely day tomorrow....ml
Your reply made me happy, having a peek into your life was lovely. Seeing the good days and all you achieved.And I understood that, I got that, it felt good to do something you’d once taken for granted.
The first time I ironed after this got tough, I was over joyed, all the times I’d wanted to shove the iron up my husbands left nostril after he’d left it until the last minute and needed something , right there and then, all the times the girls has asked me to “fly over something “ that had then proceeded to take an hour with its intricate folds and layers drove me crazy, But I enjoyed standing there , it was a step to not being wrapped in the cotton wool.
I’d love you to share more of your good days, it’s made mine that little bit better too x
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How did you hear of Lupus UK and this forum?
How do the medicos manage to make me feel so inadequate and a hypochondriac
How do I get a diagnosis?
Mobility issues, feeling hopeless 
