Calcinosis coming through feet

[lifeforce]

Does anyone have reacurring calcinosis that comes from the bottom of your feet? The podiatrist can remove them and they are back in a month. They are like walking on rocks all the time and I have tried about everything.

[zenabb]

I go regularly to the podiatrist.

[LucyJean]

Hi there, I have calcinosis badly in both hands and my left elbow. I have also had random pieces come out of my face although thankfully not significantly. So I really really sympathise with you having in your feet. Unfortunately there is no treatment or medication that I am aware of that can help with calcinosis, although I really hope that at some point there will be. I have had to have surgery on one of my thumbs because of the sheer volume of calcinosis, but it wasn't pleasant and it took forever to heal...and it comes back!!!

I can't remember exactly when but there was a stream of posts regarding the fact that, even without the calcinosis many people with scleroderma, myself included have lost a lot of the padding from the bottoms of their feet making them really difficult to walk on. There were some comments on that about insoles, boots, socks etc that you might find helpful. It wasn't that long ago so have a look in the previous posts...and I will too to see if I can find it.

I will just reiterate though that wearing thick socks, or doubling up on pairs of socks can help. You might find that strategically placed corn plasters or similar helps. I use little gel pads on my hands sometimes so the areas don't get knocked. Gel insoles...lined boots (ugg type), comfy trainers??? There is not a right or wrong, just try experimenting.

Sorry there isn't really a magic answer.

all my best

Lucy xxx

[lifeforce in reply to LucyJean]

Thank you Lucy! I have had scleroderma for 18 yrs and the feet calcinosis started about 4 years ago. I have used about everything you can buy otc and had customized insoles made by my podiatrist which aren't working. I bought KURU brand shoes that are pricey but are good shoes but with the cacinosis stones on the inside of the skin and the pressure of your body on the otherside while walking it is excruciating. It feels like trying to push an earring through a ear that hasn't been pierced. My rhum. is as helpful as a toothache. lol XXX

[LucyJean in reply to lifeforce]

Ah ha, you see you are the expert on you. I thought you would have probably tried all the obvious. Have you tried wearing sheepskin lined boots...or using sheepskin insoles? I have found my boots are the comfiest thing I put on. Doubling up on the socks is also a way to reduce friction on your skin/lumps (p.s. I know this is useless advice with the summer coming Although if you are anything like me my feet are so cold that I could sometimes wear such things throughout the year!

Is it worth calling one of the specialist centres like the Royal Free and seeing if they can provide any advice? I don't know if they would answer queries from someone who wasn't a patient but it might be another route?

Or perhaps the SRUK helpline might know?

I think calcinosis is a bit of a mystery to everyone, no one seems to know what to do about it! I have a review about my hands this week, but to be honest it is a bit of a waste of time. It is just there in case things get so bad that they have to do surgery again.

all my best

Lucy xxx

[Hidden]

Have one at base of throat. Cannot wear shirts that rub there or it gets inflamed and weeps for days. The ones on the fingers are smaller but always inflamed. Dr offered to remove but not worth it yet. Try cushy bandges for less pressure and friction

[lifeforce in reply to Hidden]

Thank you Roxanne! my elbows weeped for 10 years and healed up on their own for some reason. I have dug calcium stones out of my cheek,top of my arm and have clusters of them on the back of my right rear thigh and on my left side. My rhum. has offered no help of any kind on the subject,this disease is an unexplained curse I hate it.

[Hidden]

You dugged them out! Can't imagine. The throat one is 1 x 0.5 inches and right on the bone. Rarely bothers me. Shows with the low necklines but too old to care. Diseases hhave a way of teaching us what matters.

Sounds odd but it was the best thing that happened to me. I know my life span is shortened. So I now go on as many trips as I can, do stuff while I still can, and my clothes are not boring.

[lifeforce]

Roxanne I love your attitude. Yes the one on my forearm hit on things and would get inflamed so it took me awhile but when I got it out I put it in a pill bottle just to keep it. I have a scar but it hasn't come back. lol.....

Yes ma'm live for the day and try not to dwell..... heading to the beach soon!!

[tall-tim]

<My rhum. has offered no help of any kind on the subject> Grrrr!

Why the hell aren't they more practical with their advice? I tell them about the solutions I've found to some of my problems and instead of writing the information down and passing it on to sufferers or evaluating my information they ignore it, or try to tell me I might be doing the wrong thing. Who are they to judge? It's my body. They don't have to find ways to cope.

This Discussion Forum is so valuable and worthwhile because we can share advice and give mutual support !!