Puffy fingers without Raynaud's?

[bracken30]

I've committed the cardinal sin and entrusted Dr Google to diagnose me leading to feeling pretty distraught about the future, or lack of it...

I've developed puffy fingers in the last few months, pretty much always brought on by activities - DIY, weeding in the garden. They don't tend to become puffy until the morning after and then usually settle down throughout the day.

I've seen my GP and have positive ANA and negative ENA and have been referred to see a rheumatologist.

The thing is, everything I read (and I know I shouldn't) for diagnosing early Scleroderma describes first having Raynaud's - sometimes for years - and then developing puffy fingers. Has anyone had positive ANA and puffy fingers without Raynaud's been diagnosed? And did your puffy fingers settle down? I just want to plunge them into and ice bath!

BTW, everyone on here is so wonderful.

[Buttsy]

Hi,

My first symptoms were puffy fingers, extreme fatigue and aches and pains,the Raynauds followed later probably between 1-2 years later. I am ANA centromere positive . I still get puffy fingers ,they feel like sausages about to pop.Had to change my wedding and engagement ring twice.

I hope you Rheumatologist appointment goes well

[Nw6London]

Hi, puffy fingers and black dots around the cuticle were the first signs for me (scl70 ana and diffuse cutaneous systemic sclerosis diagnosis). Raynauds came a few months after and progressively got worse. Early diagnosis is key to prevent / slow down any involvement and you're following the right procedures. Recognise though that all rheumatologists are not created equal and these connective tissue diseases present very differently in different people, so you might be reassured (and dismissed) after your appointment but you need to go through a thorough testing process. (It's very common and even happened to me on the basis of me not "looking" like I had scleroderma....!)

As systemic scleroderma affects internal organs as well, it's important to rule anything out.

- Blood test: ANA with markers

- Nailfold capillaroscopy

- CT scan to check fibrosis in the lungs

- MRI scan

- And lung function test

Best to have all these tests done before you see the rheumatologist so they have a clear and accurate picture of your condition and can refer you to a specialist clinic if need be. (Royal free scleroderma clinic in hampstead - prof Denton and team).

Good luck!

[SwanSRUK]

Hi

I've had Raynauds for years ever since I was a teenager and was diagnosed with limited scleroderma in 2016. over the last few years I have noticed how my fingers swell up and look puffy all the time. I cant wear any rings as the dont fit!! I do miss my long slender fingers. The summer is not too bad but as the season changes so will my fingers

I find keeping my hands warm and moisturised and doing regular hand exercises helps to keep the blood circulating. I will be bringing my gloves out very soon and sometimes wear them to bed to keep my hands warm throughout the night.

Hope this helps....