Is this how it feels?

[Gingernotwhinger]

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?

[Horsewhisper]

Hello Gingernotwhinger and welcome to the forum. I’m sorry to read about your double whammy on the health front, it must have been an unbelievably difficult time for you and your family. I totally get where you are coming from with regards to feeling pretty rubbish and having horrible pain to deal with - and so will many people here - a huge chorus of empathy along with people’s lived experience will resonate with you. You are not alone, some other peeps will be along shortly to offer support and advice. Xxx

[Boudica1]

Hi, yes it is at times and as you have just discovered some people can be suffering for a long time before they get an answer to what, why and are any of these crazy symptoms connected and how. At times it's like you are on a mission to collect as many symptoms and diagnosis as possible. I have a list longer than my arm and so do most.You're not alone.

♥️

[CecilyParsley]

Hi Gingernotwhinger and welcome. I love your name ❤️. I am so sorry that you had Covid, I cannot imagine how truly awful the symptoms must be for you and then Lupus too. Clearly the Covid has sent you into a huge flare. Often when we have other ailments our Autoimmune conditions join the party. I am pleased that you have had help and support recovering from Covid but from what I have read it can be a long journey, many of the symptoms of Long Covid are very similar to the symptoms of Autoimmune conditions. I have no real advice other than to say that you are in the right place here and will find warmth, humour and support in this safe space along with a wealth of knowledge. Look after yourself I really hope it gets easier for you xx

[Gingernotwhinger]

You lot are not doing a weepy women any good 😂 your warmth is overwhelming at present and with humour is how I live so I appreciate that xx