Post covid symptoms

[Michellear]

Hi all. glad I found this site and can read others stories.

I’m undiagnosed but believe I have Lupus, it’s a battle! Waiting to see a recommended Rheumatologist, fingers crossed. Have usual symptoms butterfly rash, discoid eczema, low iron, vit d and b, severely painful joints, severe fatigue and reoccurring water infections.

Got over COVID which I believe induced a flare and now having problems with my heart. A and E doCS believe I either had a mini heart attack or inflammation in heart. Heart bpm is racing from 70 to 198 up and down for hours. Not sure what’s going on. Waiting to see cardiologist this week!!

[Cathyan]

Hi Michelle, welcome to the community! I'm so sorry to hear about your symptoms and especially the heart side of things.

Covid certainly seems to be bringing autoimmune problems out in sufferers and I just hope that the unfortunately high numbers of people like you will be instrumental in getting more investment in research and treatments for Lupus and the whole AI community. I really hope you get some answers and treatments soon and things settle down for you. Hope you find support from being on this site. Xx

[Michellear in reply to Cathyan]

Hi Cathayan, many thanks for your message and welcoming me to the community! Your words are much appreciated! Have a good day.

Michelle 👍

[Hidden]

Hi Michellear.

I can so relate to you.Was diagnosed with Fibromyalgia in 2005 and since then various new symptoms,varying conditions which GP in 2012 thought were something more than Fibromyalgia.and still undiagnosed

Like you its a constant battle -many diagnosed conditions fobbed off by some doctors who do not take my symptoms seriously .Have butterfly rash-since december-,swallowing problems- oesophegeal conditions,eczema ,Raynauds,osteoarthritis,joint pains,fatigue,weakness and more.

[Michellear in reply to Hidden]

Hi Rainbow,

Many thanks for your message.

OMG yes I agree it’s such a battle. Like you I was also diagnosed with fibromyalgia and I have seen two rheumatologists over the years. The second one I’ve only spoken to over the phone, in the follow up letter he dismissed all my symptoms and could of been talking about a different patient. My ANA come up 1:80 titre which he dismissed as negative!

I have since spoken to Paul the administrator for Lupus UK and he recommended a rheumatologist within my NHS hospital. I have since raised a complaint with PALs and they are in the process of arranging an appointment with the rheumatologist as recommended by Paul DR Arvin Kaul.

It’s so frustrating I have so many symptoms like you I also suffer with problems swallowing along with many other. It’s only when I talk to other people like yourself it makes you realise how common these symptoms are and also a flag for lupus.

Hope you have a good day, and if you haven’t done so I would ring the Lupus Uk helpline so you can get a list of recommended rheumatologists and get ab referral.

Michelle

[Hidden in reply to Michellear]

Hi Michelle,The gp i have now referred me to Rheumatology where previous gp failed to and like you I had an initial telephone consultation where the Rheumatologist decided I should be seen face to face .The rheumatologist I saw was the same one who I saw in 2012 and was the same then-not even asking what symptoms I had but going on about losing weight and doing more exercise not accepting even back then I still had swallowing problems-no appetite ate only meals -no snacks puddings.no doctor would accept that weight gain was not diet related but due to whatever was causing abdominal distension-still same now,

After the face to face consultation,I too contacted PALS and received an apology from the lead rheumatologist who has made another appointment with a different rheumatologist though I do not have a name.

Paul also provided me with the name of a lupus specialist in my area.

When I received a copy of the letter sent to my GP it led to another call to PALS-as it was nothing like what he dictated during my consultation and included things that were not said and he claimed I saw him in 2014 when I know it was 2012 the last time I was referred.He talked over me when i asked questions about Pagets Disease -as I have symptoms of that too-and tried to tell him my symptoms and claimed my "butterfly"rash was not significant of lupus but Rosacea.I know what I see and my GP confirmed it too.I hope you do not have to wait to long for your appointment and get a diagnosis.Mine is on the 18th and will be going armed with a list of Lupus and Pagets symptoms and a list of every symptom i have and all that I have been diagnosed with,

[Michellear in reply to Hidden]

Hi Rainbow, I’m so sorry to hear your story. It’s bad enough that we have to battle with our illness, but to have to battle the health system as well. It’s a big joke.

I can’t believe you are going through the same fight, it’s awful.

Keep strong and I hope you get some answers and more importantly the correct treatment!!

Michelle