3 ms·
Very interesting to hear your experiences. I have long suspected some sort of autoimmune condition (specifically undifferentiated spondyloarthropathy) resultin
by solaxun 6y ago
Very interesting to hear your experiences. I have long suspected some sort of autoimmune condition (specifically undifferentiated spondyloarthropathy) resulting in me having similar symptoms. My first symptom was tendonitis, but I was 22 back then (37 now) and very physically active so doctors just attributed it to overuse. Then both elbows tricep tendons developed enthesis and ossified at the insertion point. I have similar enthesis in basically every major joint now, and they still think it's from the exercise. I did push my limits with weights when younger but it's difficult to imagine that being the cause of all the issues I've had.
Similar to you, CRP tests were fine and bloodwork was all good, however they did find I was positive for the HLA-B27 antigen which is a known marker for autoimmune conditions and only present in about 5% of the population, but present in 90-95% of those with spondylitis, so there's one red flag. The issue is as you mention, there is no definitive diagnoses until they see joint damage on X-ray, and by then you've missed years of potential intervening treatment.
Eventually I developed brain fog like you describe, but it was gradual and difficult to tell if the symptoms were related. It's not always debilitating but I'd say 4/5 days I'm foggy to varying degree, and then one day where I'm about 3x sharper. I've learned to just ride the productivity wave those days and do mundane stuff other days.
I thought it may be sleep related, and although getting more sleep does seem to give me a higher probability of a "good" day, it's not a panacea. There are days where even after 10 hours I'm still foggy, and I can tell immediately upon waking up how the day will go.
While I'm sympathetic to those who say googling your way to diagnoses can be harmful (and no doubt it may frustrate some doctors), I don't entirely agree. You have to live with your body and mind 24/7, and you have one and only one patient to care for - yourself. You will always be more motivated to find the answer than your doctor. A doctor cannot read your mind or feel your pain, and simply pattern matching symptoms is something anybody can do. It can never hurt IMO to go into the discussion informed and ask pointed questions.
The medical field is an evolving science, they don't have all the answers, they don't even have most of the answers.
- o-__-o 6y agoHow do you manage your job with so many days being out of commission? I have noticed a drastic difference since catching COVID and fear the days of my youth being able to churn anything out on a whim is over
- solaxun 6y agoOn my out of commission days, I'm foggy but I can still get stuff done, I just won't be able to operate at the level I could on a good day. It's frustrating because you know your capabilities, but you just can't get there. Imagine running a 6 minute mile, and the next day you give it 100% and 8 minutes is a struggle. I try to prioritize creative work, e.g. building something new, really hard problems, etc. for "good days", and I focus on work that I've already begun and can see the completion path for on bad days. I do occasionally have days where I'm totally useless, and if that happens I'll just do mundane rote tasks that I've been putting off.
- SoylentYellow 6y agoHave you seen a Rheumatologist? They are your best bet for diagnosing spondyloarthropathy early. Your symptoms along with being HLA-B27 positive should be enough to get you an appointment.
- elcritch 6y agoSecond that. There's also ultrasound measurements to help diagnose inflammation related damage. Perhaps a sympathetic rheumatologist might put you on a trial run of one of the moderate RA treatments to see how you do.
- solaxun 6y agoSeveral. HLA-B27 is an indicator, but you can't diagnose definitively without seeing joint deterioration on X-Ray or MRI. Typically for Ankylosing Spondylitis it's the SI joint that has the most damage, which for me is fine so far. The problems I have are more peripheral joints, and the only changes I have on X-Ray are bone spurs at the insertion point of several tendons which can result from overuse so it's hard to attribute to a rheumatological condition with any certainty. Most recently a rheumatological told me some people are just "bone formers" which might be true, but is still frustrating to hear as it kind of came across as very hand-wavy.