And nothing was wrong with me…
Last summer I had some sort of autoimmune thing kick up. Frankly I’m not sure it was autoimmune or what the hell it was, but it hurt, left me feeling exhausted, and caused my hands, face, and elbows to form raised red spots that later peeled off (here). It was incredibly painful, made me question the minor breakouts of whatever it was that had been going on for a good ten years or so prior, and was a red flag that I was not okay. But the pandemic has been ongoing so getting attention from the VA, which is notoriously awful, had been difficult. Had been, I finally got the chance to see someone.
We can cut to the chase. I had bloodwork, urine, and all sorts of other tests run. Then they sent my photos to dermatology and gave me special creams, which ironically did nothing or possibly made it worse, which is a whole other confusing thing. Basically I finally had a doctor believe me and decide to run a few tests. This is the VA so I don’t trust a damn thing they say or do, but this was a nice change of pace. For reference, it took almost 10 years to get an MRI just to have the VA admit that I suffered a serious TBI while I was serving, so this is surprisingly speedy.
A few months ago they sent out my first set of bloodwork. My vitamin D levels were non-existent, like barely registering on the test low, so I was prescribed some high dose vitamin D2 or something along those lines, but everything else came back normal enough. There was one marker for inflammation that was higher, but in range so basically nothing was wrong with me according to the tests they ran. A frustrating result considering whatever the hell was happening really sucked.
That was bad news, but since one of my inflammatory markers was high, the doctor decided to do the full autoimmune work up based on the higher value they found. They also ordered bilateral hand x-rays because I have a lot of stiffness in them and they thought it could be arthritis or some autoimmune disorder causing arthritis. This gave me hope because obviously something is causing this and it would be nice to have a fix or at least a name so I knew what to expect as my life progresses. I mean I’m a grumpy old man trapped in a somewhat younger mans body. So I still have quite a few years left before I should have to worry about all this.
And of course the results came back normal. Nothing showed up on my x-rays and my bloodwork is unremarkable. It’s been a few months and my vitamin D is still low (as in outside of the reference range still), but is like 10x higher, so that’s a good first step. All the bloodwork otherwise was within reference range with the exception of what appears to be two things which are high, just just barely outside of the reference range. Worse, those don’t seem to have anything to do with what’s going on with me so here we are, back to square one.
My Uncle had lupus, so I thought maybe he wasn’t the anomaly in the family I thought he was, but so far nothing. Now there isn’t a test for lupus unfortunately, but my inflammatory markers and other autoimmune markers all came back normal so things are looking like I’m healthy. If it weren’t for the weird raised blister type things that felt like burns and peeled like they were burns I would think it was all in my head. Not to mention the exhausted feeling that came with it.
Which of course they blamed on my depression/anxiety/PTSD/whatever, but as I wrote yesterday (here) I am intimately familiar with how depression effects me and how I feel when I’m depressed. This was a very different, very scary thing and felt like an incredibly ramped up feeling of the normal drained feeling I have all day every day (again attributed to depression/anxiety/PTSD/whatever). I had honestly hoped they would figure it out and find something.
It doesn’t look like a diagnosis is on the horizon for me, so I’m back to square one. I don’t know what will happen next or if the doctor will brush it off and say there’s nothing more they can do, but even if there are more tests to run (which based on the last conversation I had it doesn’t really sound like it), there’s no guarantee that it will turn out any different.
To say I’m disappointed would be an understatement. I’m tired of being in pain, feeling exhausted all the time, and having these painful whatever you want to call them pop up on my hands, elbows, and face whenever I’m super stressed (which is basically all the time). I just want a break and that isn’t the depression talking. Okay, maybe it’s partly the depression talking, but I really needed some good news, not being able to find something would be great if nothing were wrong with me, but whatever the hell is going on is not fun.
I realize I’m lucky to have healthcare through the VA, even if it is awful care it’s better than no care at all. I try to make that disclaimer anytime I talk about the VA because I’m aware that not everyone can just see a doctor even if they were dealing with the same stuff I am. Healthcare shouldn’t be so hard to get, but in the US especially, it is.
Considering the amount of work I need to do, between yesterday’s post and today, I don’t know how this week is going to turn out. It certainly isn’t looking good though.
Man, it stinks when the doctors don’t understand what’s happening. I hope they can figure something out for you.
What you’re describing reminds me of the bumps I get on my fingers now and then. They do sting a little like burns, and after the swelling goes down, the top layer of skin peels. I always figured they were allergic reactions to soap or cleaners. But who knows, I guess. Mine never got problematic enough for me to ask a doctor about them.
Best of luck.
June 13, 2021 at 7:07 pm
Thank you! That does sound like what’s going on with me.
Are yours large? Mine can be roughly the size of a dime on the hands (specifically the fingers) and larger on the elbows and face. The face stuff has been going on for like a decade now, but the hand stuff started like tiny spots, pinprick size almost and just grew from there.
June 13, 2021 at 8:26 pm
No, mine are small … generally less than 5 mm in diameter. Though a few months ago I made the mistake of putting Benadryl cream on one area, and then it puffed up to cover the underside of a whole finger segment.
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June 13, 2021 at 9:01 pm
That’s wild! I always use prescription hydrocortisone, but it thins the skin long term and I use it on my face a lot, so my new doctor tried changing it to something stronger but okay for my face. Well it made it worse (or at least I feel like it did and it definitely didn’t help). The doctor was super confused by it. Maybe I’m not the anomaly I think I am if you have something similar. Thank you for sharing and answering my questions! You’re amazing, as always!
June 13, 2021 at 10:22 pm