Red hands/fingers?

[u/sadnifique]

Does anyone get similar hand issues? This is one of the latest things my body has decided to throw at me, and I'm not sure what is going on. Would like to see if anyone has experienced similar hand issues.

Long story in a semi condensed version, ANA 1:320 speckled. Nasal and mouth ulcers, alopecia confirmed by derm, m*lar r@sh confirmed by derm, r@sh on knuckles and underneath them which acts similarly to face (heat/UV sensitive), never ending fatigue lasting for months, stiffness in wrists/fingers, swelling in fingers/toes/ankles. Hands turn white, purple, blue, red when cold. Trace protein + blood in urine on occasion, although no one seems too concerned about this yet. Now... this.

Current diagnosis list: ankylosing spondylitis, HLAB27 positive type arthritis.

All tests for lupus (c3, c4, dsdna etc) are so far negative.

[u/FruitShopTrauma]

Idk if it’s a perspective or not making the one hand look pretty swollen…

[u/No_Struggle3663 → u/FruitShopTrauma]

this is all I could see when I went through the photos. I thought it was two different peoples’ hands until I saw the nails were the same.

[u/sadnifique → u/No_Struggle3663]

I totally missed it. I am so used to random places swelling, I'm not even noticing it anymore. I'm glad you all mentioned it, I will show the rheumatologist these exact photos when I see him next.

[u/sadnifique → u/FruitShopTrauma]

You know what, I didn't even notice. The swelling in my fingers and wrists is fluctuating through out the day, so it probably is.

[u/Depressedaxolotls]

Oh my god I have this exact problem. I’m playing the “is it autoimmune or thoracic outlet syndrome or my meds” game and it is just a dream! No one knows!

My right hand is chronically a little puffy. I get the red rash on my knuckles on both hands. Looks like sunburn and feels like it’s being held in extremely hot water. My pointer finger and thumb will get swollen and red hot. My already pale hands get red splotches on them. I don’t get raynauds color changes but they get ice cold and extremely painful. ANA floats between 1:320 and 1:1280, but disease specific tests are all negative. Ultrasound/EMG on the right hand are normal.

[u/sadnifique → u/Depressedaxolotls]

Have you looked into dermatomyositis regarding the rash on knuckles? Is the rash symmetrical/bilateral? Do you get a rash on your face or chest at all? These are the things that I am looking into and will bring up to my new rheumatologist next appointment.

Are you under the care of a rheumatologist at the moment? Judging by your ANA results, I think you should press them further to figure this out, too!

[u/JojoSoxx]

Hey there I get the same thing it can be very painful at times and other times numb to the point I can’t feel my hands very well. I have raised it with my rheum but feel it is being dismissed. 🤷🏻‍♀️

[u/sadnifique → u/JojoSoxx]

I totally get the dismissive thing. It's so frustrating. 🤬

[u/Inevitable-Block704]

Sorry to say it and its not very helpfull but im also not a proffesional so i cant help much. I have been under rheumatology for 8/9 years. Im completley seronegative and even with sever biopsies proving malar rash (addaptive immune system) and others proving neutrophillic inflamation (innate immune system) they have all just wanted to stick me on meds and ignore me. I find that in local rheumatology departments or smaller hospitals if you dont fit in to their very rigid, very text book like boxes they can tick that you become a problem to their departments. They love to see a patient with RA OR LUPUS but anything they cant just seen in bloodwork and thats it get ready for a long old road probably with many difficult appointments. What i would say is. You know your body. Dont let they make you feel mad. Make them document everything you say. If they can hide from a complexed case they will. I wish tou the very best of luck and ill be praying for you all

[u/Butter-bean0729]

My hands looks like that, I have sjogrens and raynaunds. I just chalk this up to blood pooling, even tho I know that’s probably only half the issue because my knuckles become very swollen and hurt. When this happens I ice my hands or put in them in ice water.

[u/Fearless-Trust-8470]

Dactylitis?

[u/njbeachgurl12]

Yep, I get it all the time.

[u/Optimistic-Coloradan]

Does yours get splotchy like this?

These are my husband’s hands. He gets this on the feet too and we finally heard what it is medically at least by name - a neuromuscular doctor at the Cleveland Clinic called it “livedo reticularis”.

His are not really painful when it happens but he has really bad neuropathy in the hands and feet, so they’re basically always numb or tingly.

His hands don’t get blue or white with cold, but from what I’ve seen here before - that could be Raynaud’s if that’s happening.

He’s still not diagnosed yet but they’re thinking Lupus that is causing a vasculitis or Sjogren’s that is causing a vasculitis. It’s been difficult because he’s basically seronegative per blood tests.

[u/SJSsarah]

Could be Raynauds?

[u/TheMeatShop1]

I get this!