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Joint pain after sunlight exposure.... autoimmune? What kind...?
Hello there. Sorry... this might sound a bit hurried, but it's just that I'm having some issues with fatigue right now, and being at work while nearly falling asleep. Anyways... I'm in the process of trying to find out exactly what is wrong with me. I've found a few answers, but they don't explain it all, and thus I'm still looking. Since the possibility for auto-immune has been suggested, I'm posting here in the hopes that some insight may be gained.
I've been diagnosed with dysautonomia in the form of neurocardiogenic syncope. This explains the very fast pulse(easily hits 120 while I'm at rest), tendency to faint (or nearly faint), and some of the fatigue. The dysautonomia in general would explain how I barely sweat at all, and how I no longer get a fever when I get sick. But the doctor said the immense fatigue I experience is simply not explained by this... so he sent me to a rheumatologist to check for fibromyalgia or chronic fatigue.
So it turns out that most, if not all, tender points that signal fibromyalgia are strongly present in me. I'd thought I was just a little sensitive to touch (I guess I should have known that being lightly poked in the arm really shouldn't make me flinch). So that explained the huge sensitivity to touch (thankfully I am not in pain ALL the time) and some more fatigue.
... But not enough. And there are things it doesn't explain. As the stress has mounted at work, I have found that there are other symptoms becoming a fairly huge problem. The main one is joint pain. I thought it was around at random, but it seems this isn't quite correct. The pain spikes greatly if I am under the sun for any length of time beyond maybe 5 minutes. My face also goes very red, and the fatigue reaches impressive levels in which I'm nearly falling asleep, even being a person used to dealing with fatigue. My pulse also tends to go funny under the sun. The joint pain lasts several days, while the redness lasts an hour or two before it starts to fade. The fatigue is very variable in duration. I also have unexplained, low-grade fevers very often (I don't get fevers when I get ill... but I do get them when I'm not. No idea how this happens). My hands go white, then purple in the cold. The rheumatologist started me on Plaquenil, and finally the pain in my joints has started to subside. Knowing that plaquenil is basically something that interferes with the immune system, I figure it may indeed be auto-immune... but my question is... what could it possibly be? There's a daunting amount of auto-immune things. I don't know where to even start looking for answers. All I know is that, whatever it is, it is VERY strongly worsened with sunlight. Not heat, even.... the other day I was out in very hot weather but firmly in the shade, not close to the sun (so very little reflection) and I was OK. A few days later, I was out in hot weather under much more reflection and the pain became very intense. I was nearly sobbing. Definitely had to use a wheelchair at the supermarket that evening (I use a cane because of pain and excessive fatigue whenever I walk for more than... maybe 5 minutes. 10 if I REALLY try). It gets hard when the pain flares up because my wrists are killing me, and I work with computers... so it's hard to type or move a mouse.
Anyways... any help, pointers... anything... would be very much appreciated.
I've been diagnosed with dysautonomia in the form of neurocardiogenic syncope. This explains the very fast pulse(easily hits 120 while I'm at rest), tendency to faint (or nearly faint), and some of the fatigue. The dysautonomia in general would explain how I barely sweat at all, and how I no longer get a fever when I get sick. But the doctor said the immense fatigue I experience is simply not explained by this... so he sent me to a rheumatologist to check for fibromyalgia or chronic fatigue.
So it turns out that most, if not all, tender points that signal fibromyalgia are strongly present in me. I'd thought I was just a little sensitive to touch (I guess I should have known that being lightly poked in the arm really shouldn't make me flinch). So that explained the huge sensitivity to touch (thankfully I am not in pain ALL the time) and some more fatigue.
... But not enough. And there are things it doesn't explain. As the stress has mounted at work, I have found that there are other symptoms becoming a fairly huge problem. The main one is joint pain. I thought it was around at random, but it seems this isn't quite correct. The pain spikes greatly if I am under the sun for any length of time beyond maybe 5 minutes. My face also goes very red, and the fatigue reaches impressive levels in which I'm nearly falling asleep, even being a person used to dealing with fatigue. My pulse also tends to go funny under the sun. The joint pain lasts several days, while the redness lasts an hour or two before it starts to fade. The fatigue is very variable in duration. I also have unexplained, low-grade fevers very often (I don't get fevers when I get ill... but I do get them when I'm not. No idea how this happens). My hands go white, then purple in the cold. The rheumatologist started me on Plaquenil, and finally the pain in my joints has started to subside. Knowing that plaquenil is basically something that interferes with the immune system, I figure it may indeed be auto-immune... but my question is... what could it possibly be? There's a daunting amount of auto-immune things. I don't know where to even start looking for answers. All I know is that, whatever it is, it is VERY strongly worsened with sunlight. Not heat, even.... the other day I was out in very hot weather but firmly in the shade, not close to the sun (so very little reflection) and I was OK. A few days later, I was out in hot weather under much more reflection and the pain became very intense. I was nearly sobbing. Definitely had to use a wheelchair at the supermarket that evening (I use a cane because of pain and excessive fatigue whenever I walk for more than... maybe 5 minutes. 10 if I REALLY try). It gets hard when the pain flares up because my wrists are killing me, and I work with computers... so it's hard to type or move a mouse.
Anyways... any help, pointers... anything... would be very much appreciated.
I'm also having joint pain after being in the sun and in the middle getting a diagnose possibly for Sjogrens syndrome. We just got the first sunny days after weeks of rain and I tryed to do a little work outside and woke up eary morning with throbbing pain around my ankles elbows etc. SS and Lupus share symptoms. Also check out the Immco lab online, they specialize in auto immune disorders and have a lot of information for you and your doc.
2 Comments
sounds maybe like lupus.....im suppose to have mild lupus....I was on plaquinil for 1.5 years and then said no thanks for now...Im on big doses of vitamin D for now....This summer if im in the sun too long my joints hurt, and its a first where i could almost clock on it....My ANA was high and strange back when i was tested few years ago....and some inflamation etc...I use to be super tired but have hypthyroid issues too, and was going thru menopause etc....so things over lap and u just never know, unless u have the worse case scenerio...
make that hypothyroid issues
You may be having something with the blood vessels anyway check this post out, it might solve your question :
http://www.medications.com/sun-exposure/cond-extreme-sunburni-cant-walk ^^ hope you can see the post ! and hope it solves your problem! Thanks :)
http://www.medications.com/sun-exposure/cond-extreme-sunburni-cant-walk ^^ hope you can see the post ! and hope it solves your problem! Thanks :)
I've had two ANA tests and so far both are negative. Doctor says it can't be lupus because of it... but I dunno.... I've also heard there are other auto-immunity tests aside from ANA and I haven't had any of those done. She now wants me to go to a dermatologist, but.... I don't understand what a dermatologist would possibly be able to say about the joint pain (which is the biggest problem, after all).
And yeah, I ocassionally get sores in my mouth. It's not a very common thing, but it happens once in a while. Right now, I have a painless one that looks like a kind of dot of blood and it's too low to have bitten that.
And yeah, I ocassionally get sores in my mouth. It's not a very common thing, but it happens once in a while. Right now, I have a painless one that looks like a kind of dot of blood and it's too low to have bitten that.
Yes, the lights are fluorescent. The U-shaped bulb kind. They also flicker, although I'm not sure if anyone else notices, especially since if I stare at the reflection, it almost doesn't seem to flicker, but I can see the flickering perfectly well in my peripheral vision. They're also so much brighter than the rest of the office lights.
That might be what's increasing my fatigue. My skin also looks slightly redder than normal, especially the top of my arms and hands, and my cheeks/nose/just-above-the-eyebrows, which would be what's exposed to this light more. I'm slightly anaemic... the light worsens everything and my joints are aching like mad.
Is there nothing aside from lupus that could explain this?
That might be what's increasing my fatigue. My skin also looks slightly redder than normal, especially the top of my arms and hands, and my cheeks/nose/just-above-the-eyebrows, which would be what's exposed to this light more. I'm slightly anaemic... the light worsens everything and my joints are aching like mad.
Is there nothing aside from lupus that could explain this?
If the light bulbs are florencent, it might possibly affect someone w/ lupus.
I'm not real familar w/ small RBCs.
Just so you know, the day my ANA was 2,560, I was having a pretty good day. And on a day when I thought I was dyeing, it was negative. It is not a good indicator of disease activitiy and can fluctuate even in people w/ lupus.
I'm not real familar w/ small RBCs.
Just so you know, the day my ANA was 2,560, I was having a pretty good day. And on a day when I thought I was dyeing, it was negative. It is not a good indicator of disease activitiy and can fluctuate even in people w/ lupus.
... I should add, I think, that my red blood cells are a bit smaller than usual, but not low in number. I think that is an anemia?
Lupus... I would not be surprised. Two male cousins in my family got it, so I'm likely to have a bit higher genetic risk than I would otherwise.
They did do an ANA test before. Came back negative that time, but apart from the fatigue, I was not having any symptoms, really. And it was in winter anyways. Got another ANA test done... still waiting on the results. I didn't get too much sunlight exposure before it, but wasn't quite asymptomatic either. If that one is inconclusive... I think I'll do what you say and just wait in the sun right before the test.
They just changed the light on top of me at the office. It's brighter. And my joints have been achy since yesterday. I'm wondering if it's got something to do with it.
They did do an ANA test before. Came back negative that time, but apart from the fatigue, I was not having any symptoms, really. And it was in winter anyways. Got another ANA test done... still waiting on the results. I didn't get too much sunlight exposure before it, but wasn't quite asymptomatic either. If that one is inconclusive... I think I'll do what you say and just wait in the sun right before the test.
They just changed the light on top of me at the office. It's brighter. And my joints have been achy since yesterday. I'm wondering if it's got something to do with it.
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I went back up to see if you had ever had a positive ANA. Couldn't see at a glance. I would ask for the test to be repeated and spend time in the sun prior to the test.
Another question, do you have sores in your mouth or nose?