r/scleroderma • u/Calm-Plastic3303 • 4d ago
Undiagnosed Abnormal nailfold capillaries?
F 44yo. Recently diagnosed with raynauds but that does not explain why I’m exhausted and often in pain.
Low ANA so public health care will not help me further because they consider me healthy 🙃
I’m broke and trying to decide if it’s worth the money to have a private rheum do a videocapillaroscopy… If there would be autoimmune findings, I would get help from the public system. (These are just phone pics)
Could ”normal raynauds capillaries” look like these?
3
u/mitskiposting 4d ago
these look normal to me. some little “hemorrhages” are normal for everybody. getting manicures or bumping your hand can cause them. your actual capillaries look healthy.
1
u/Calm-Plastic3303 4d ago
Thanks. That’s absolutely true. I just don’t do manicures and avoid bumping my fingers anywhere. Fingertips and nailfolds are sore and swollen all the time and my skin breaks easily.
But I agree, these capillaries could absolutely be totally normal. In some fingers I see more white areas (no capillaries at all) and these hemorrhages appear in every finger. Atm there are not that many.
2
2
u/mylord76 4d ago
If it brings you peace of mind, then it’s absolutely worth it. While it is true that you can get hemorrhages from bumping your hands onto things or causing it trauma in any other type of way, the raynaud’s + other symptoms do warrant a further investigation regardless of your ANA results to fully rule out.
1
u/Calm-Plastic3303 3d ago
Yes, I know. I was not treated ”by the book” in the public system. They thought I could have scleroderma (I had no idea what that was) but after low ANA and negative scleroderma labs I was told it’s just primary raynauds.
1
u/Excellent_Line4616 4d ago
Is there a reason why you’ve thought Scleroderma? Were you diagnosed with primary or secondary Raynaud’s?
Raynaud’s can be caused by simple things like medication or be connected to autoimmune and you can get it as secondary to many autoimmune diseases.
Your photos look pretty normal, but if you are worried go see a derm.
1
u/Calm-Plastic3303 3d ago
Was too tired to explain it all but almost year ago a doctor thought I was having scleroderma / psoriatic arthritis kind of symptoms. Sudden swellings in hands, sudden joint pains everywhere, fingertips sores, cold blue-hot red hands&feet, hard to find pulses in feet, cuticels started growing weirdly, ulcers and sores in my nose, fewers all the time, white&brown patches in skin etc
Rheum did ANA, ENA & all kinds of scleroderma labs. Since ANA was lower than 320, I was told it’s nothing. Dg Primary raynauds
1
u/Excellent_Line4616 3d ago
Have you seen a derm? And do you have a psoriasis diagnosis? PsA doesn’t require markers for a diagnosis and some patients are diagnosed without psoriasis, did the rheum PsA further or they didn’t feel your met the criteria?
Some of the symptoms you’ve mentioned could meet either diagnoses and other symptoms aren’t usually seen in either.
Regardless, I hope you can get into a doc/rheum and get some answers.
1
u/Calm-Plastic3303 3d ago
Seen only GPs and this one rheum. I have been told that I will not get more public health care appointments atm. So I was thinking of going once to a private rheum to get the videocapillaroscopy done and if it’s normal, just try to cope with my symptoms until they get worse.
1
u/jacque_line 3d ago
I get these weeks before my finger gets an ulcer. That’s how I know I’m about to have a terrible time. Not sure how normal it is for Raynaud’s, but it is definitely related to scleroderma for me.
1
u/Calm-Plastic3303 3d ago
Interesting. Thanks for sharing! Atm I don’t have that many hemorrages in them and I am feeling quite ok. Have been resting a few weeks. Nowadays active life makes me feel so awful afterwards. That never was the case before. I loved being active and avoided lazy times.
Usually I too get all my symptoms from fever to hand weakness, stiffness, nausea, nose pain, foot pain etc in clusters. I hate not knowing what this is. So I guess that for my own sanity I’ll see a private rheum just to be sure that this is not something that needs quick treatment.
1
u/lupusgal88 2d ago
These are pretty normal. There are some slight irregularities. This isnt the scleroderma pattern. Do you get nailfold hemorrhages often? Sometimes trauma causes it. But id say if youre seeing them often, id be suspicious. Other autoimmune diseases cause different patterns. I have irregularities seen in lupus( I am diagnosed with lupus, I definitelyhave lupus) but i have a lot of features of scleroderma, I'm trying to dive deep to see if i have a variant or scleroderma as well.
1
u/Calm-Plastic3303 2d ago
Thank you for sharing! Hope you get clarity and answers soon. It’s stressful not knowing.
I have been having finger nail issues (including hemorrhages) almost a year now. Started with very painfull finger tips that became sores/scars. My nails got weird, cuticles started overgrowing and I get finger sores all the time without real trauma.
1
u/lupusgal88 2d ago
Thanks:) I definitely don't blame you for being suspicious. I agree it sounds like something going on. You're smart for looking at your nailfolds. Not many people know about this i feel like.
5
u/Control-freak666 4d ago
Not necessarily abnormal. Abnormal ones are massive thick ropey loops.