Advice on what's happening to my thumb?

Advice on what's happening to my thumb?

I have MCTD, diagnosed in 2011. About three years ago, I started getting pain at the end of my thumb. It felt like I had a splinter. After me poking and prodding at it trying to find the splinter, it hit all flaky, top layers of skin peeled off then the pain stopped. This started happening every three or four months, getting progressively worse.

Now I have a distinct course of events. First the feeling of a splinter, with a lumpiness I can feel and it's become increasingly painful. Then the skin goes hard and several layers peel off leaving the end of my thumb incredibly sensitive. If I'm unlucky it will then split and has been infected needing antibiotics. Then the healing process and it's ok till the next time. At its worst it takes two weeks from start to finish and there is usually a gap of around 6-8 weeks before it starts again. It seems to be worse if I'm in a flare up of my disease.

This photo was from last September when it was bad, just before it split and got infected. I asked my Rheumy about it but he was fairly dismissive, saying it was "the least of my problems" He was more interested in discussing with the registrar my suitability for a drug trial!

As MCTD is a mix of lupus, myosotis and scleroderma, I was wondering if it was something to do with that?

It's more of an annoyance than anything else, but it is getting worse each time and if it starts in other fingers I can imagine it causing quite a lot of misery for me. I'd appreciate if anyone can throw some light on, something for me to take back to my next clinic appointment! TIA x

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  • Well I've recently had a very similar pain in all of my finger tips that comes and goes. Last week Scleroderma was ruled out with a normal nailfold capilliary test for me - but my new rheum and GPs all think the cause is Raynauds secondary to my confirmed Sjögren's.

    The other thing that ruled out Scleroderma for me was that the tissue under each of my fingertips did not/does not feel hard/ fibrous at all and my rheumy could pinch the skin on the tops of each hand easily. Is this the case with you?

    Also worth considering, if you don't have Raynauds - is some sort of eczema. I do get Pompholyx on one finger and when I scrutinised my fingertips very closely using my iPhone - I discover these tiny deep blisters/ vesicles that I recognise as Pompholyx. My GP did not agree and says it is all CTD related but I think I just have an unfortunate overlap of Raynaud's chilblains, small fibre neuropathy and Pompholyx myself.

    And yes it is remarkably debilitating and disruptive having painful fingertips. I've posted about it a few times on here and on the SRUK HU too recently. I wish you luck getting to the bottom of this and sincerely hope your other fingers aren't affected.

  • Hi Tia,

    I am sorry to hear that you have been feeling poorly and are not satisfied with your rheumatologist, have you considered requesting a referral for a second opinion or to see a dermatologist?

    A symptom of MCTD can be ‘Raynaud’s phenomenon’; this is where blood flow may be restricted in the fingertips, potentially causing open sores to develop which can become infected if not treated. To learn more about Raynaud’s phenomenon click here: lupusuk.org.uk/coping-with-...

    We published a factsheet on ‘LUPUS: and Mixed Connective Tissue Disease’ which discusses symptoms, complications and the treatments available for MCTD. You can read the factsheet here: lupusuk.org.uk/wp-content/u... . Alternatively, if you would like a hard copy of this factsheet to take with you to your next appointment you can email me at Chanpreet@lupusuk.org.uk .

    Wishing you all the best, let us know how you get on.

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