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Joint Pain With Your Breakouts?

MissyLala

By MissyLala
in Dermatitis Herpetiformis

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MissyLala Newbie
MissyLala
Posted

Hi All

 

Just wondering how many of you suffer joint pain when you breakout? I still haven't had a dx of what is going on with me and if any have read my story - I went gluten-free on my own suspisions and now would have to challange to find out for sure/ I just saw an allergist today and he thinks maybe Lupus bc based on my joint pain and areas he thinks Lupus may be it. I was just wondering how common Joint pain is on the topic/DH? Is pain in the joints/tissues commone when you get outbreaks? When I get itchy bumps I also get joint/tissue pain with them on my elbows knees

 

 I got one on my collar bone a few days ago and then my chest plate area and the area in between my breast (sternum maybe?) was so tender and sore I could barley pick up my children - it was like I pulled a mescle feeling but I didn't. That lasted for 3 days and now its gone.  Now when I breakout they raise itch for seriously one second and then don't bother me again but just hand around for a few days and look like a little pimple....is this consistent with DH on a gluten-free diet to come up itch and then leave you alone?? 
 

Thanks so much

 

btw - @squirmingitch....how are you these days? Did you ever use Dapsone? I saw your old posts about your rash getting way worse after going gluten-free that is so scary :( What is your current status? Sending HUGS!!

 

 

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squirmingitch Veteran
squirmingitch
Posted

Sorry it's taken me so long to answer. I've been swamped with work.

Actually, I sort of felt like it was the other way around with me that is. I would get joint pain & then I would get blisters there. Or hand pain followed shortly by blisters on my hand. I believe it's all just a product of the inflammation going on.  I know the celiac was giving me all my pain --- everything has resolved now. It's mind bending to think that I had been having lower back pain to one degree or another since I was around 13 or 14 and now it's gone. Just poof! Gone. ALL those years. It just staggers me to think of it.

 

I got so bad off with pain all over my body & not just the joints, it included muscles too, that I thought I would be in a wheelchair within a couple years. I was getting epidurals in my spine so that I could function. And the pain would hit at random - no warning - just suddenly there. It might be the muscle between my elbow & my wrist or maybe it was the bone --- all I know is it was the worst pain I've ever experienced in my life. So bad you could not even cry or scream. It might hit my knee, or my shoulder or hand or calf or heel. Of course the longer I was eating gluten the more intense the pain got & occurred more frequently. But I did notice I seemed to always get blisters in that area soon after the pain began. That is in addition to whatever blisters were ongoing at the time.

 

I'm doing great now. I still have some of the rash but it is worlds different now. I do know that one day I will be rash free. I keep thinking it's got to stop anytime now but I might just end up being one of those people who it takes ten years for. I hope not but I can live with it if it does. It's mol like insect bites now & few & they don't itch 24/7. I no longer get migraines, the pain is gone, no bloating, gas, belching, no muscle spasms, no eye lid twitching, no depression, no anger/rage, no pounding heart that I can hear in my ears, my bp is back to normal, no needles feeling in my feet & hands, no more mucus in my eyes, fatigue is gone, I'm up to 110 lbs. now which is great b/c I was down to 93 on a good day -- sometimes the scale read 91 and I no longer get the intermittent bouts of screaming cramping D . I'm doing really, really well! Thanks for asking.

squirmingitch Veteran
squirmingitch
Posted

I wanted to add something but didn't have time earlier about the outbreak you saw of me in the photos in the dh photo bank. That horrid, horrid time!!!!! I have done a lot of thinking about that and have come to the conclusion that outbreak was at least in part and I believe a very large part due to a steroid backlash. Remember I said I had been getting steroid epidurals for all the pain & immobility I was experiencing? Well I have counted up the months from the last time I had an epidural & that outbreak occurred just about the time that I would have needed to get another. So I believe that outbreak was a backlash from the steroids leaving my body. The question that remains & I will never be able to answer is how much did the steroid being in my body suppress the dh prior to that time??? I may very well have had a much worse rash for all that time that I was getting the epidurals if not for them.

At any rate, it's all over now & for that I am eternally thankful. I don't think I could survive another outbreak like that one. Those were the very darkest days of my life & I did seriously think of suicide. 

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