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!