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Is this Raynaud's?

MNE4 profile image
MNE4
15 Replies

Hello!

I've been having some issues with swelling of my fingers, it started in april last year with one finger and gradually moved to others, my ring and pinky ones are not affected, visible swelling is only in my index fingers, thumbs and middle ones just give me a feeling but cannot be seen. I did multiple blood tests, CBC, urinalysis, SE, CRP always within normal ranges. In february this year, 10 months after the onset of my symptoms I've done ANA (hep2 substrate, igg) which showed (2+) and the details of it say: The detected ana pattern is of moderate intensity, it is not associated with specific antinuclear antibodies and is of limited clinical significance, it can be detected as an epiphenomenon within various infectious, inflammatory, allergic and other, non-autoimmune diseases, due to taking certain medications as well as in healthy people in a lower percentage. C3, C4 proteins within normal ranges, ANCA-negative, RF-not detected, ANTI RO&ANTI LA-not detected. In april, 1 year after the onset of symptoms I did capillaroscopy as well, the result shows that the blood flow as well as the appearance of the nailfold is within normal ranges. Some loops have dilated ansas and venous arms but do not meet the criteria of enlarged capillaries. No visible microhemorrhage. According to todays capillaroscopy there are no pathological changes that would indicate an increased risk of developing systemic sclerosis, dermatomyositis and MCTD. My rheumatologist ordered urethral swab for ureaplasma, mycoplasma and chlamydia, it came back negative for all 3. I noticed that my fingers usually swell after a hard day of overusing them, or when I would use tools such as hammering, keyboard, mouse etc. I'll make sure I tell that to my dr. Yesterday I was at the ER and it was kind of chilly and I noticed my fingers/hands having weird looking color brownish dark/ especially when kept down low, if I raised my hands they wouldn't look like that as much. I'm curious if this looks like Raynaud's? I would thank anyone who would make an effort in reading this and replying.

Thank you and God bless.

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MNE4
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15 Replies
Sanmateogirl107 profile image
Sanmateogirl107

congrats you have raynaud's there is meds that can help prazosin 1 mg or you can take wild lettuce extract for ebay, mt rose herbs i take it for scleroderma, lupus works so good for pain. rheumatologist, immune doctor and others keep demanding an answer keep your hands warm in cold weather wear gloves and your feet, warm pjs in cold weather, electric blanket, etc hope that helps. god bless angel you are a warrior. love julieanna

MNE4 profile image
MNE4 in reply to Sanmateogirl107

Thank for your reply! Are you 100% sure this looks like it? I 'd appreciate other opinions on this

Sanmateogirl107 profile image
Sanmateogirl107

go to raynaud's on line click on images it looks like raynaud's to me. julie

Sanmateogirl107 profile image
Sanmateogirl107 in reply to Sanmateogirl107

ask on line see what people say to me it looks like it. they should have told you at the doctors office if it was or was not. me i would say yes. i have the same thing in my feet doctor told me it was raynaud's but also erythromelalgia have you been tested for crest syndrome let me know ok good luck love julie

MNE4 profile image
MNE4 in reply to Sanmateogirl107

Thank you for the effort on replying. Were you referring to the white on the middle part of my fingers? If so that's just how my skin color is there all the time, even now when my hands are warm those parts are whitish in color. I was talking more about dark brownish color. I could feel my hands back then, no tingling sensation or numbness, just normal feeling of chilly hands.

Sanmateogirl107 profile image
Sanmateogirl107 in reply to MNE4

dwhat about crest. to me it looks like raynaud;s i would take pictures go back to the doctor and get a strait answer. demand answers. if you need a second opinion go for it. i can not stand cold weather hands and feet change color. i would say its raynaud;'s it can hit in many forms. tingling i have, burning i have, what about r.a if you have a parent with autoimmune disease it is handed down as well. so family history is important. julie

MNE4 profile image
MNE4 in reply to Sanmateogirl107

No one in my fam has known autoimmune diseases, so far I have done multiple tests hands xray no pathological deformities or calcionosis, ANA normal, c3, c4 normal, RF negative, anti ro and anti la normal. Biochemistry test, CBC, urinalysis, ast, alt, fibrinogen, gout tests normal, SE and Crp always low. My capillaroscopy in april this year showed no pathological changes of increased risk of developing systemic sclerosis, dermatomyositis or mixed connective tissue disease. My friend who has Raynaud's says it's not even close to how it attacks his hands/fingers, he's going to a rheumatologist on tuesday and will show her this photo and ask for opinion.

Sanmateogirl107 profile image
Sanmateogirl107 in reply to MNE4

ok got it did you know raynaud's can be idiopathic meaning no cause it just happens primary and secondary. julie

cagol profile image
cagol

Hi. Ex-immunology trainee doctor here, with experience in autoimmunity and lab testing, although it was few years ago.

I'm not clear on why you think it could be Raynaud's. If it were, there would be cold-induced arterial spasm, which would make your extremities go white, then bluish if it's a prolonged attack, then red and possibly swollen on rewarming. It can be very painful both on triggering an attack and on rewarming. This doesn't sound at all what you are describing, especially the bit about it being positional or related to activity, and the photo isn't consistent with Raynaud's. In Raynaud's, your finger tip or the whole finger would be completely white. If you want to be sure, you can try triggering it by plunging your hand into a bowl of ice-cold water and seeing if this causes pain and white fingers! If you had Raynaud's, you'd have a hard time forcing yourself to do this as it would be excruciating.

It sounds like you have been extensively investigated for scleroderma, which causes finger swelling (sausage fingers) but your photo doesn't look like this either. Reading between the lines, my intuition tells me that you are not feeling reassured by all the negative tests and feel that the symptoms remain unexplained despite all the negative tests and this is completely understandable - being told what it isn't doesn't help you work out what it is or what to do about it. I dont feel confident speculating on what it might be from your photo and history but the fact that it is positional and related to activity makes it less likely that it is something worrying. I think it would be absolutely reasonable to get a second opinion from another doctor if the rheumatologist hasn't been able to explain your symptoms and you are worried that they have missed something. You may find symptomatic relief from compression gloves.

God bless you and I hope you can find an answer soon. It's hard not knowing what's going on and it's not easy to be an advocate for yourself. Well done for reaching out and for not being satisfied with no answer and no plan.

MNE4 profile image
MNE4 in reply to cagol

Exactly! Thank you so much for making an effort in reading about my situation and understanding me, it really means a lot. It is a real pain not knowing what it is and I have done almost all of the blood tests, xray and capillaroscopy, yet no answers I got that there's something serious lurking... My symptoms change in a day, like, 1 day I wake up with that feeling and the next day I don't have it, which is really weird to my doctor. My friend just told me that when Raynaud's attack him it's not even close to what my photo shows his entire fingers all the way to the tip turn white, he'll ask his rheumatologist on Tuesday for me cause for the past 2 months I can't get my referral to mine, everythings full... pardon my bad english but you say it doesn't look like Raynaud's to you?

cagol profile image
cagol in reply to MNE4

Yes, it neither looks nor sounds like Raynaud's. It is really reassuring that all the tests are negative but that doesn't help you work out what it is! Maybe try a general physician instead of a rheumatologist as it sounds like you've been really thoroughly investigated for rheumatological diseases.

MNE4 profile image
MNE4 in reply to cagol

Thanks a lot for helping me out and giving me advice! I'll get on with it tomorrow morning! Thanks once again and God bless you.

tanya1981 profile image
tanya1981

DefinitelyDoesn’t look Like raynauds to Me…I can’t even see swollen fingers here at all…

Check out a photo of my hand below to see what Raynauds looks like in action.

..
MNE4 profile image
MNE4 in reply to tanya1981

Thank you Tanya for your reply and giving me enlightement, cause google shows the worst case scenarios and your photo indeed helps me see how it looks. Take care and God bless.

cowhide profile image
cowhide in reply to tanya1981

yup, this is my Raynauds (secondary to limited systemic sclerosis)

hand displaying Raynauds , purple in colour with red patches and white fingertips.

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