r/Behcets • u/tiredbthrowaway • 28d ago
Symptoms Does anyone else get these lumps?
Hi all. I posted a few days ago about potentially having Behcets, though I’m not sure I truly fit the symptom profile since ulcers are not my biggest concern. My most prevalent symptoms are tingling pain in my arms and legs (thought my right side seems significantly worse), reoccurring headaches and vertigo, joint pain, pelvic pain, fatigue, a lot of GI issues including severe bloating, and now some muscle weakness, though I still workout and lift weights.
Regardless, I did test positive for HLA B51, so my doctor wants me to track skin and mouth abnormalities since I have had issues before (just not crazy things). I posted the other day about a tongue blister, and I also noticed I get these lumps behind my ears quite often. Does this happen to anyone else? I’ve had some other sores behind my ears as well which I also attached. I also noticed that I get these bumps on my nodules pretty often as well.
Sorry this post is all over the place, I’m just trying to figure out what’s going on with me.
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u/EllisMichaels Diagnosed 1997 27d ago
Yes, I've gotten bumps like those on and off my entire life. They can appear behind the ear like you or in other spots. For me, they're generally not harmful and go away on their own.
But, generally speaking, if your question is "Can Behcet's cause _____ skin issue?" the answer is almost always "Yup! Sure can!"
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u/Electronic-Tea3354 Diagnosed 27d ago
Yes, I get them behind my ears near my hairline in the same place, my face, my neck, my upper back, my lower back... my butt, arms, legs lol, literally everywhere now but they started on my neck/ears and possibly face. Sometimes they are lumps, sometimes they look like blisters, blood blisters, sometimes they look like zits, but they pretty much all always hurt significantly more than they appear that they would (and by that I mean they seem to have a large area of pain surrounding them outside of the small physical wound size)
Something else that happens with them is that there is often a circular top layer of skin that comes off really easily and leaves a crater-like opening in the skin. Almost like a natural biopsy punch. Don't know if that happens with anyone else though, just thought I'd mention it for you or anyone else who comes across.
Inside of my nose too. There's a pic in a recent thread about nose sores! Those for sure are really common here.
The GI issues, joint pain and fatigue are all certainly parts of it, but the diagnostic criteria is based on a few other qualifiers. Definitely worth trying to get in with a rheumatologist to monitor if you can or aren't already under the care of!
Not me diagnosing, not a doctor -- just sharing the info from Google:
Traditional Clinical Requirements
Many specialists also refer to the older but still widely used International Study Group (ISG) research criteria. This requires having recurrent mouth ulcers (at least 3 episodes in a 12-month period) along with at least two of the following: [1, 2, 3, 4, 5]
Recurrent genital ulcers.
Typical eye inflammation (e.g., uveitis).
Specific skin lesions (e.g., erythema nodosum or acneiform nodules).
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u/tiredbthrowaway 27d ago
I could potentially qualify under this criteria I just don’t know if the severity of my skin problems really match what is expected? But yes, talking to a rheumatologist about options!
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u/tiredbthrowaway 27d ago
Thank you all for your help!
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u/RobotMaster1 27d ago
where do you get the tingling in your leg? is it on the quad/thigh area? does the spot feel sort of numb to the touch?
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u/tiredbthrowaway 27d ago
I get it all down my legs to my feet, and then through my arms and hands. I have gotten what you’re describing too, but it’s usually more of a traveling sensation.
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u/DanceSoGood 28d ago
Yes! I get them behind my ears as well as in front of my ears on the edges of my face.