Does this sound more like an autoimmune issue than long covid?

[SpikeWithoutASoul]

Apologies for very long boring post! Hoping to get some opinions on whether I’m clutching at straws and should just accept long Covid diagnosis.

No health problems at all for 40 years except what I assumed to be IBS. Now rarely up to leaving the house. Started in 2021 and used to disappear for a few months but now am lucky to get 5 good days in a row.

Two different things seem to happen to my body. My limbs become so heavy and leaden, like gravity is pulling them down. Legs struggle to hold me up in the shower etc. Wake up with aching hands. Knees feel weak and swollen, although never any actual swelling anywhere. At the same time, my appetite disappears, my bowels become crampy and (sorry for TMI) I pass huge amounts of mucus. Every time I need the loo, I sweat profusely from the bottom of my back. Also freezing cold all the time. General feeling of exhaustion and being shut down.

The weakness and bowel issues always come together. Never one without the other. In 2021 a colonoscopy ruled out IBD as biopsies were clear but they did see inflammation.

GP is positive I have long Covid. This is because in 2021 a CT scan showed mild ground glass opacity in my lungs. I have never smoked or been around smokers. She says many long covid patients have lung scans showing the same and, together with the body weakness symptoms, this strongly suggests long covid. She thinks the bowel issues are irrelevant.

Obviously she may be right, but I’m not convinced. Firstly, I have never had symptoms of brain fog, breathlessness or heart palpitations which all seem very common in long covid. Secondly, this feels more like something that flares up, and the bowel issues are often the first indication that I’m going to be unwell. It just ‘feels’ like an autoimmune issue.

Blood tests in 2021 were normal and included rheumatoid factor, so am I just wasting my time if I consult a rheumatologist? Do I need to accept the long covid diagnosis? Any other suggestions? Thanks for reading all this!

I can totally understand why you want to find out. It does sound like something flaring, yes the GP knows about long Covid but you know your body. You mentioned your hands, do you get Raynauds?

Thank you for responding. I don’t think I have Raynaud’s. I do ‘run cold’ and my hands, feet and nose are often cold, especially when tired.

Raynauds is when your hands and feet are cold enough to change colour.
It can be primary, you just have it and recover from each episode, or secondary to something else, often autoimmune connective tissue disease and can lead to damage to your fingers. For some can also lead to stiff sausage fingers.

Thank you. I do keep coming back to things in that area but GP was adamant they would have been flagged by blood tests. I definitely think I will try for a referral to rheumatology. If I’m barking up the wrong tree, then at least I can focus on anything to help long covid. GP wants to prescribe antidepressants but I don’t want to take them.

I had tests as I was passing mucous and all came back clear so doc could only assume gluten intolerance as there’s no test for that. I have an autoimmune disease and if I have gluten it’s sooooo much worse. Not directly helpful to you I’m sure but may be of interest.

Thank you. That is helpful. If no one can give me a clear diagnosis, I’ll definitely be trying things like an elimination diet.

I totally understand your desire for a diagnosis, because that will bring the most chance of treatment but also possibly understanding and acceptance. My personal experience is that treatments, especially medication go with symptoms rather than overall diagnosis. Apart from that it is looking after yourself, diet, lifestyle, etc.

ask to be referred to rheumatology. If you can’t afford a private initial appointment you will be in for a long wait, but a rheumatologist will test your antinuclear antibodies - that can often show up an autoimmune disease when the rheumatoid factor and CRP results are in normal range.

@SpikeWithoutASoul sorry to hear that you are suffering so much with it, I hope you can get some answers. When the biopsies showed inflammation, did they conclude then that it was IBS? Definitely not Crohn's or coeliac disease? And did they make any recommendations about how to reduce the inflammation? Its possible for gluten to be a temporary (or long term) trigger, but best to rule out coeliac before cutting it out. Have you had a calprotectin test recently?

I have a latex allergy and related foods such as bananas have a similar affect on my gut. It took a while to work out what was causing the problem.
I also found that as I headed into menopause I started having muscle and joint problems, HRT was no benefit but found out eventually that it was B12 and magnesium deficiency. I take lansoprazole and have done for years. It’s only fairly recently that its affect on absorption of B12 and magnesium has been reported.
My main symptom was peripheral neuralgia. My hands have recovered but I still have parts of my feet I probably will never feel again.
I do have an auto immune problem which stems from a pituitary problem. Again over the last few years research now shows that many of the health problems I have are a result of the pituitary problem.
I rarely see my GP, apart from mandatory annual checks. I do take a shed load of meds for the problems that have developed from pituitary, I really wish I didn’t since I take nearly as many to counter the side effects. I think most people would be surprised that I take 9 different tablets a day, along with dietary supplements, but after two years of trial and error I’m doing ok.
Auto immune is not always rheumatoid. There are some more unusual ones. Also menopause can complicate everything.