While I (probably) don't have an autoimmune disease, in knowing that I'm not the only person that have experienced that sort of helplessness navigating my way through the medical system, without even finding a defining name for the condition in question. I tried searching online for the symptoms only to find very general cases that do not have some of the main characteristics. Quite the same feeling one gets when they search for an error message only to find the source code that raises that exception. :)
Sometimes I think the medical issue I'm suffering from is annoying enough but not being able to diagnose it just adds an insult to injury. Is it that I cannot express my problem well enough to find similar cases online? Is this such an obscure case or maybe a lot more people are experiencing it but they just handle it so much better that they don't feel the urge to complain about it?
Just to be more specific and less mysterious, I'm suffering from mild chronic joint pains, in pretty much every joint starting from ankle, knee, lower back, neck, elbow and hand. The tricky bit, and the reason I didn't use plural, is that the pains only occur on either left side or right side of my body, but only one side at a time, usually the pains will switch sides (left <=> right) overnight (though not every night). It has low correlation with the intensity and volume of physical activity I'm doing. Blood tests show nothing out of the ordinary, C.T shows that I do have mild case of bulging discs in my back, which would have explained back pains (which I have) but not the issue of feeling them in just one side (along with every other joint in that side). These pains, mild as they are do not respond in any way to NSAIDs. Popping my knuckles (and every other joint you can think of) helps momentarily. If the pain level is above normal, sleeping is affected too (in fact it's almost always affected to some degree), which in turn amplify the pains as poor sleep would do.
Nerve conduction tests also revealed nothing and the doctors I've seen couldn't offer any observation. The fact that I have quite an athletic build doesn't help either since doctors note that and assume that I'm doing just fine. In fact though, these pains, which have started in my teenage years and have become worse in my early twenties (I'm in my late thirties now) take a daily toll on me, in terms of sleep, fatigue and my attention span.
I'm lucky to have been very healthy in my life other than that, but I feel that I could have done so much better if I didn't have that invisible medical issue affecting me every day.
Could be microclots. TIAs or mini strokes. They won’t show up on MRIs unless you get very lucky. I kept having stroke symptoms, one sided weakness being the biggest one.
3 years of being told it was clots. A big clot showed up in lung and nearly killed me. Put me on blood thinners and one sided weakness and other symptoms cleared up.
They ran genetic tests. I have a clotting disorder, factor 5 Leiden. Plus an autoimmune condition that is known for clotting problems.
Even 325mg aspirin will “mostly” stop issues for me.
First of all, thank you for trying to help, and I'm glad they discovered it in time and I hope it stays under control.
While I cannot be sure that's not what I have, one side weakness doesn't sound quite like it and in addition, when I tried aspirin in the past it didn't noticeably affect the level of pain I'm experiencing (nor do other NSAIDs such as Ibuprofen and Naproxen, both however work great for me in case of a headache, which I rarely experience)
Could be possibly some form of fibromyalgia which is generally not well understood, but it is likely “neuropathic pain.”. Does applying heat to the area in pain help?
Thanks, that's actually a good guess but I forgot to mention that Fibromyalgia was an option I tried to get diagnosed for but it got eliminated, I think the main thing that convinced the doctor it isn't not Fibromyalgia was pain points testing: he applied pressure to specific areas but the pain is hardly affected by pressure (or heat, which you asked about).
It's just there most of the time, feels a lot like how a stressed joint feels (to me at least), which is to say, mild and bearable but has an accumulative effect over time, a bit like the way noise can be ignored if you hear it for a short while less so once you realize you're stuck with it for 24 hours.
Sometimes I think the medical issue I'm suffering from is annoying enough but not being able to diagnose it just adds an insult to injury. Is it that I cannot express my problem well enough to find similar cases online? Is this such an obscure case or maybe a lot more people are experiencing it but they just handle it so much better that they don't feel the urge to complain about it?
Just to be more specific and less mysterious, I'm suffering from mild chronic joint pains, in pretty much every joint starting from ankle, knee, lower back, neck, elbow and hand. The tricky bit, and the reason I didn't use plural, is that the pains only occur on either left side or right side of my body, but only one side at a time, usually the pains will switch sides (left <=> right) overnight (though not every night). It has low correlation with the intensity and volume of physical activity I'm doing. Blood tests show nothing out of the ordinary, C.T shows that I do have mild case of bulging discs in my back, which would have explained back pains (which I have) but not the issue of feeling them in just one side (along with every other joint in that side). These pains, mild as they are do not respond in any way to NSAIDs. Popping my knuckles (and every other joint you can think of) helps momentarily. If the pain level is above normal, sleeping is affected too (in fact it's almost always affected to some degree), which in turn amplify the pains as poor sleep would do.
Nerve conduction tests also revealed nothing and the doctors I've seen couldn't offer any observation. The fact that I have quite an athletic build doesn't help either since doctors note that and assume that I'm doing just fine. In fact though, these pains, which have started in my teenage years and have become worse in my early twenties (I'm in my late thirties now) take a daily toll on me, in terms of sleep, fatigue and my attention span.
I'm lucky to have been very healthy in my life other than that, but I feel that I could have done so much better if I didn't have that invisible medical issue affecting me every day.