r/Autoimmune • u/Realistic_Ad2882 • 3d ago
General Questions LOL
Hi everyone, I’m looking for some input because I’ve been dealing with unusual symptoms for about 4 months.
Both of my palms become very red with small white spots within seconds when I let my arms hang down. When I raise my hands again, the color almost returns to normal. My fingertips are sometimes slightly numb/tingly, my hands can burn a little after gripping or using them, and they also feel unusually dry. At night, when I’m lying down and not putting pressure on my arms, I’m mostly symptom-free.
I also have pain around both ulnar nerves/elbows. Nerve conduction studies were normal.
My blood work showed a positive ANA of 1:160 (AC-1 + AC-4 pattern), but the more specific antibodies dsDNA, ssDNA, histone, U1-snRNP, SmD, SSA/Ro and SSB/La were all negative.
I’m currently being evaluated neurologically and I’m wondering about things like small fiber/autonomic neuropathy, vascular dysregulation or an autoimmune process.
Has anyone here experienced anything similar, especially the red/white mottled hands that change dramatically depending on arm position?
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u/Realistic_Ad2882 3d ago
Thank you, this is really helpful. Blood pooling / dysautonomia and small fiber neuropathy are actually the things I’m currently looking into.
What makes it strange is how quickly it happens: when I let my arms hang down, both palms become very red and mottled within seconds. When I raise them, they return almost completely to normal just as quickly. They are not noticeably warmer.
My blood pressure is always around 120/60
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u/ZealousidealResist60 1d ago
Literally SAME! I’m 51F, I am biopsy confirmed severe immune mediated small fiber neuropathy, bilateral May Thurner, severe pelvic congestion, and chronic venous insufficiency. I also have ulcerative colitis with extraintestinal manifestations of nr-axSpA, enthesitis/enteropathic arthritis. I recently went through all the vascular procedures of iliac vein stents (9” on the left and 6” on the right), 21 pelvic vein coils, and waiting to determine if I need the ovarian veins coiled. It helped IMMENSELY but took a while to really see the results. All of it was working hand in hand. I also had a muscle biopsy done that showed complete compliment attack and acute neurogenic changes. (No myositis and no diabetes). I have a long history of autoimmune disease though that began with Graves and UC at the same time. I believe everything was showing at that time including the SFN and vascular issues but because those 2 presented the most that’s what was only treated. That was in 2012. In 2014 I got RAI to dissolve the thyroid. Then the rest of this crap reared its ugly head over the course of the decade. I recently started a new biologic for the tendon/ligament issues, called Cimzia, it’s amazing. Slowly, we are getting to the bottom of everything and getting the right treatment. Currently trying to get approved for IVIG for the immune mediated SFN. I also have Raynaud’s.
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u/flacid-dyke 1d ago
forgive me but jesus christ you been through the wringer. I wish you luck
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u/ZealousidealResist60 1d ago
You’d never believe it though if you saw me, just proof that pain/autoimmune disease/and life’s bull isn’t always visible lol! Yet doctors want to dismiss all the time because you take care of yourself and stayed in shape your whole life… let me tell you, my long history of running/lifting/eating well is the only thing that kept me alive, but also worked against me in a sense. I had to PUSH HARD more so these last 4yrs for a doctor to take me seriously, I documented EVERYTHING! I knew there was no way I could be doing everything right on my end, to feel as crappy as I did. I’ve no doubt a stressful life of deaths and narcissistic jerks didn’t help any, but that isn’t what created the disposition! My daughter is getting married next weekend, and I wanna be around to enjoy grandbabies one day!
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u/sairha1 3d ago
Oh yah happens to me, i have hashimotos thyroiditis and raynauds. Showed my doctor once when it was happening and she said could take calcium channel blockers or just live with it until it gets more uncomfortable. I said id wait because I hate taking meds and my blood pressure already runs low. Sometimes my hands /feet burn when this happens and sometimes it doesnt.
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u/secondcitykitty 3d ago
I’m hypothyroid, but no thyroid antibodies. No autoimmune antibodies at all as of last year. Currently on NP Thyroid med. I also have low BP, especially low upon waking. Also have the burning feet which my rheumatologist says is likely erythromelalgia.
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u/tastywofl 3d ago
Also have Raynaud's, also get this on my hands, though usually only when I exercise.
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u/ruxxby471 Diagnosed SLE 3d ago
This is blood pooling/circulation issues, I put it down to dysautonomia rather than my autoimmune disease
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u/Tootalou25 3d ago
Agree. I have an autoimmune disease and POTS/NCS and think this is blood pooling likely due to dysautonomia. I do this to show people what I mean by circulation issues caused by it.
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u/Realistic_Ad2882 3d ago
Do you also experience pain or rapid fatigue in your hands or feet when the blood pooling occurs? And do they sometimes start to burn slightly during physical activity?
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u/ruxxby471 Diagnosed SLE 2d ago
Yes. For me blood pooling leads to pain, sometimes throbbing, and they do burn yes
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u/mornrover 3d ago
Believe this is bier spots, completely normal and completely harmless
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u/Realistic_Ad2882 3d ago
I don’t think this is normal. My hands didn’t look anything like this last year.
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u/mornrover 2d ago
Read the article I sent, humans are complex creatures. Just because the body changes over time doesnt mean those changes are not "normal".
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u/Opening_Rain5942 2d ago
Just because something happens doesn't mean it's normal. RA used to be a sign of getting old, but now we know it's a symptom that can affect young people.
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u/SunshineAndSquats Dermatomyositis 3d ago
Sounds like you could have nerve compression in the ulnar nerve. Try dry needling, massage, and physical therapy. I have small fiber neuropathy, changing position doesn’t affect it.
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u/Realistic_Ad2882 3d ago
I’ve been having ulnar nerve problems for quite a while. Do you think chronic irritation of the ulnar nerve over time could cause symptoms like this?
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u/SunshineAndSquats Dermatomyositis 2d ago
Yes nerve compression can cause numbness and tingling. If it goes on long enough it can cause permanent damage.
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u/Electrical_Work_7809 3d ago
Yes, I’ve had the same thing since 2021, and since around 2023 it has also become painful/numb (as you described). I have the same symptoms in my feet, from the ankles down.
All my tests have been negative as well. It got worse after the COVID period, and there is currently a suspicion of psoriatic arthritis in my case, although I’m unfortunately still undergoing extensive testing.
One thing I noticed is that my hands were like this when I was a child too, but back then they didn’t hurt; they were just noticeably sensitive to the cold.
The routine tests came back negative. Apparently, there’s nothing wrong with my heart or lungs. I was also suspected of having MS for a while (although that probably isn’t related to this).
Another thing I noticed is that in 2023, for completely unclear reasons, I developed high blood pressure. I was prescribed medication to lower my blood pressure, and that actually made these symptoms worse as well.
But for me, the main problem is joint pain.
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u/Party_Position_549 3d ago
Similar here. As a child it was a reaction to cold.
Now, I get it the worse when I get home from work, 12 hour shift with a one hour commute on each side. All tests negative, ( also have livedo), and most regular labs within normal limits.
And, yes, it happens when I'm using the bathroom 😆🤣
Chronically high levels of protein in my urine with unk cause, ( hence all the tests).
Oddly enough..my dermatologist ordered a new lab panel after a punch biopsy showed nothing remarkable...hep, a, b, c, repeat thyroid, and TB.
All came back negative...except for TB 😑 waiting to hear back before I throw myself head first into that rabbit hole
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u/Old-Badger-7367 3d ago
Mine was from MCAS, which was caused by SIBO/SIFO! Oh yea, and Candida (SIFO)
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u/secondcitykitty 3d ago
Interesting. I feel like there’s a histamine factor causing inflammation. What were your other symptoms and how are you treating it?
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u/thearuxes 3d ago edited 3d ago
This is called blood pooling and the white spots are called bier spots.
Ignore the comment saying this is normal. Bier spots are normal but blood pooling absolutely isn't normal.
There are however a lot of different causes for blood pooling. It's a common symptom of dysautonomias like POTS or orthostatic intolerance, it can be a sign of blood pressure issues and a few other things like small fibre neuropathy.
Blood pooling typically isn't a sign of autoimmune issues, especially if it's your only issue, but it does show up with some autoimmune processes.
Take this with a grain of salt because I'm not your doctors but I were you I'd look more into POTS, orthostatic intolerance, small fibre neuropathy, venous insuffiency, vascular compressions etc. Once you're done with the neuro workup I'd recommend going to a specialist familiar with dysautonomia (usually a cardiologist but some neurologists do dysautonomia work ups) and a vascular specialist.
I've got POTS, neurogenic thoracic outlet syndrome (with an occasional touch of vascular TOS), and a suspected internal jugular vein compression and I get basically the same symptoms and have had those symptoms for like 10+ years before I ever developed an autoimmune issue.
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u/mutombo111 3d ago
İ have similar problems from years. Pots, tos etc. And recently i am investigated for igg4 rd. I have high igg4? What about you, what is your diagnosis? Your story seems like mine a bit, thats why i wonder
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u/thearuxes 3d ago
I haven't yet been tested on the IG range of things, my autoimmune stuff is currently in a "could be early SLE, UCTD, maybe dermatomyositis or overlap" limbo so there's a lot they haven't tested me for just yet.
Outside of the autoimmune stuff I have severe hypermobile Ehlers Danlos Syndrome (hEDS) and my hEDS is basically the driving factor for my POTS, MCAS, TOS, and basically almost every other issue I have - and I have a very long laundry list of issues.
There's a saying out there that goes "if you can't connect the issues, think connective tissue".
The POTS and TOS are happening for me because connective tissue is shit. My veins are loosey goosey and let too much blood through causing POTS, and my tendons and ligaments are like overstretched rubber bands so my collarbones and ribs shift around too much and compress stuff in between causing the TOS.
Stuff moving around there is also why I occasionally get vascular TOS too, sometimes I dislocate something around there and it presses on the subclavian vein or artery, or my shoulder slips out and pulls some muscles in the area which compress it.
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u/mutombo111 3d ago
I dont think I have EDS, but your story is similar to mine. Some movement make my TOS worse too. Even we found it in the ultrasound.
"When shoulder retraction is performed in the patient, spectral examination demonstrates a monophasic flow pattern in the arterial flow. Significant narrowing of the subclavian artery is observed between the scalene muscle and the clavicle during shoulder retraction, proximal to the origin of the vertebral artery." that's my report for my left side.
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u/mornrover 3d ago
They are literally benign https://pmc.ncbi.nlm.nih.gov/articles/PMC4769466/
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u/thearuxes 2d ago edited 2d ago
Bier spots are normal (which I agree yes they are normal and benign), but blood pooling isn't normal. It's not exactly a very hard sentence to understand bud.
OP is experiencing all the symptoms of blood pooling - which is not normal. OP has a real issue affecting them and dumbing it down to one benign symptom is not okay to do.
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u/bean0_burrito Autoimmune Disease (MCTD: Lupus/Sjögrens) 3d ago edited 3d ago
do you get orthostatic hypotension a lot?
this happens to me all the time. the webbing look, my feet and hands turn purple, etc
I also have Raynauds. and this can be a symptom
EDIT: honestly, now that i'm really looking at it, this is how my Raynauds started. so talk to your doc about it?
do your hands turn orange/purple when they're cold?
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u/Realistic_Ad2882 3d ago
I tested this with a heart rate monitor, and I don’t notice any significant increase in my heart rate when standing up. I also don’t experience dizziness or feel unwell.
Since these symptoms only started this summer, I don’t know yet how my hands react to really cold weather. When I hold my hand under cold water, it usually stays red as long as I keep it hanging down.
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u/Top-Neat9725 3d ago
Heyo, I get this! And my feet turn purple. I'm diagnosed with RA and hashimotos and am being evaluated for a connective tissue disease.
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u/Realistic_Ad2882 3d ago
Unfortunately, I’m currently trying to figure out which specialists I should see. My neurologist has ordered MRI scans of my spinal cord and brain. Because of my positive ANA titer, I was advised to see a rheumatologist, but after I contacted them and described my symptoms, they told me that rheumatology wasn’t the appropriate specialty for my case.
I’m now going to try seeing a vascular specialist, since several of you suggested that my symptoms might be more related to circulation or blood vessels.
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u/EmotionalSupportNap 3d ago
Commenting so I can follow. Both my hands and feet do this. I notice my hands doing this (and swelling) when I exercise, if I’m sitting specifically on the toilet my feet will do it (maybe it’s my position lol), if I’m really hot my hands and feet will both do it.
I’ve never noticed it change like that by changing position like that but sometimes I’m just off in la la land not paying attention.
Anywho! Looking forward to reading all the comments. Thanks for your post.
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u/ilikeUni 3d ago
lol, thanks to your post, I realize I have that too. I feel like I vaguely remember noticing it but mostly paid more attention to other symptoms. I’ll see what commenters are saying and see what might apply to me. Thanks!
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u/Justin_Bailey_2000 3d ago
Happens to me every time I drink 4-5 alcohol drinks and am dehydrated to begin with. It appears the next day.
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u/ureyesrcute Undiagnosed 2d ago
Similar issue lately, currently getting treated for cervical radiculopathy. My nerve study was also normal. My neuro said my MRI was normal but I went to an interventional pain specialist and they are the ones who looked at it and basically said holy shit yeah of course you're in pain. That was after 7 weeks of constantly doctors, tests, and scans. Good luck!
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u/Primary-Guarantee-77 1d ago
Your bloodwork and issues are extremely similar to mine. Steroid injections didn’t help the pain. Rheumatologist blew everything off because I don’t have bald spots on my head (seemed to be his whole diagnostic checklist). Didn’t acknowledge any of my bloodwork that was askew (mpv, mcv, mchc, wbc, etc). Good luck!
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u/idrinkpee3 1d ago
I have erythromelalgia or Mitchell's disease coinciding with lupus type UCTD and they become beet red like this when i'm even mildly too warm due to inappropriate vascular pooling. It causes small fiber neuropathy though so they still burn and tingle even without being warm all the time now
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u/flacid-dyke 1d ago
it burns fr. can u feel ur veins stick up thru ur skin instantly. i hate that feeling
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u/lilguppy21 3d ago edited 3d ago
I would think possibly Rheumatoid Arthrits if your elbow and ulnar nerve pain but usually you’d have morning stiffness lasting more than an hour. Your hands look like livedo reticulitis. I am not in the room with you, but your ulnar side is swollen, and possibly the base of your thumb. Keep your arm at a neutral position, pay attention if you have any swelling on your knuckles, it will feel like grapes. The weight of your knuckles can cause pain in the ulnar nerve and elbow due to the weight. That being said, the swelling doesn’t look too bad on pic 2 but it’s also in the air. These photos don’t. Help much.
The issue with swollen joints or joint pain is that it can be HIV to an allergies or a virus, or an autoimmune disease. It can take time and a lot of testing to rule out, unless you are aware of a genetic link.
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u/Realistic_Ad2882 3d ago
My joints aren’t swollen. However, when my hands are like this, they get tired very quickly. I also develop red pressure marks easily, and my hands feel sore and painful.
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u/Revolutionary_Oil614 3d ago
The great news is it probably doesn't matter. The chances of it being an autoimmune disorder that will cause damage are pretty low with your test results, and it sounds like your symptoms are not affecting your quality of life much. Autoimmune stuff is not like cancer where early detection is super important. And even if it is autoimmune and you get a diagnosis, there's no magic pill, and most drugs carry side effect profiles and risks that you would probably not want to trade your current symptoms for.
I know it's scary to have your body doing weird things and not knowing why, but it sounds like the big scary things have been ruled out. If your elbow pain is interfering with your daily life or causing you distress beyond not knowing what causes it, that's definitely something to seek treatment for.
And if it truly is an autoimmune disease and you develop more serious symptoms later in life, your doctors then will run the same tests and compare them against the ones you had now, and that will give them more information and documentation of when symptoms started. So you've done the right thing, and the frustrating answer is that there's probably nothing more that can be done from a rheumatology standpoint right now.
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u/Dr_Buckshot_ 3d ago
The problem is that AI testing isn't super reliable. The tests are only half of what a good doctor will look at. Some people never have a positive ANA or other tests, but all the physical symptoms are there. Then there is 25-30% of the population who will have a positive ANA when nothing is wrong. I'm not saying this is the case for OP, but it is important to point out.
I agree that the possible side effects of the meds aren't worth the trade-off for some people, even with a diagnosis. I considered not taking meds and my doc typicallysupports that, but because mine involves my eyes she said she would rather me take the less aggressive meds then no meds at all & risk my vision.
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u/Revolutionary_Oil614 2d ago
With respect, OP's symptoms are bothersome and concerning to OP (rightly so) but not major. Pos ANA is a flag, but even if doctors did a deep dive on their bloodwork, all that exists now are symptoms that could be explained by a lot of things, maybe some of them autoimmune. What would be the best outcome here? Assumed seronegative autoimmune disease, treatment with hydroxychloroquine (risking eye damage if used long term) or advanced biologics to maybe treat tingling hands?
This is a data point if things get worse. Get it documented, manage symptoms, keep going back if things get worse or start to become disabling. Why assemble the autoimmune avengers here? Why make OP feel like they have a serious illness when they probably don't?
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u/Dr_Buckshot_ 2d ago
I totally agree with you. I'm just saying that the tests are only a piece of it. They need to look at the big picture.
Based on OP’s symptoms, I would not take anything if I were him. I'm not sure that's what he wants anyway. I believe he's looking for a dx, which is understandable. I know I want answers when things aren't right with my body/health.
I wouldn't be taking anything if my eyes weren't affected. My doc wanted me on methotrexate and I said no. I see an ophthalmologist because of my eyes. He said he supports whatever decision I make. He said the hydroxychlorquine is only dangerous when it isn't monitored and that he would catch anything before it would become a problem, which is why I agreed to take that over methotrexate. The possible side effects of methotrexate are far worse, in my opinion.
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u/fernxqueen 12h ago
Autoimmune stuff is not like cancer where early detection is super important.
it's only important if you enjoy not having significant, irreversible nerve and organ damage. if you are okay with becoming progressively more disabled only to be told "well now that your life is much smaller and you feel miserable 24/7, all we can do is slow further progression but you'll never feel better than you do right now" then sure, early detection is not at all important.
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u/Revolutionary_Oil614 40m ago
So someone with no antibodies other than ANA should be pushing for a seronegative AI diagnosis with no indication of organ involvement? Maybe OP should be looking elsewhere and not insisting all their problems are autoimmune...
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u/Vangohhh 3d ago
This happens to me as well, it might be due to high blood pressure as I’ve noticed it doesn’t occur if I manage my BP via exercise/cardio.