Scleroderma & Raynaud's UK (SRUK)

I am feeling desperate today, the calcinosis in my elbows and hands is getting bigger and more painful by the day. I have had a long

sleepless night with the pain. I had an emergency appointment with the Royal Free last week where I was told there is nothing new and nothing they can do to help me with except to go and see Mr. Goddard and have them drilled. I had this done once before but everything came back within a few weeks. I have tried all sorts of alternative remedies and therapies but to no avail. Has anyone had any luck with their calcinosis. Usually I'm a very positive person but today, I think, due to lack of sleep and pain I am not quite so sunny.

6 Replies

My heart goes out to you. It is very hard to be Pollyanna with lack of sleep and pain. I just can't imagine what you are dealing with. So sorry that I can't suggest anything to assist. I hope and pray someone will have a helpful suggestion for you.I hope your sunny self returns ASAP. Hugs XO


Thank you adleybra, for your lovely kind words. They made me feel so much better and the sun has shone all day. Lots of love xxxx


Hi Monika - I'm very new to these conditions and so far only have Raynauds with RA and Hypothyroidism so I had to look up Calcinosis - it sounds really horrible for you and I'm very sorry. No advice but lots of sympathy - so glad the sun has shone all day for you at least. RArebird x


Hi Monika,I hope you have a more comfortable night tonight.I have CREST with everything this acronym stands for.Fortunatley I do not have calcinosis on my elbows but my fingers are very deformed and have skin thickening on legs and face.All the areas get inflamed and very tight.I find if I rub any of these areas it makes them worse so I dab them,this does not hurt the underlying nerves as much.

I moisturise but it does not help the calcinosis.Each specialist I have seen say there is nothing they can do or give to prevent this.

Are there days when the pain is not too bad and you are more able to cope?

There are some days when my calcinosis is not so painful or inflamed and I am keeping a diary of what I eat and what household tasks I do.I have only just started doing this so may not have any results for a while but if I find there may be a connection I will share it with the forum. I wish you well and please stay positive.x


Thank you all so much for your love and support. Together, hopefully, we will find a way of dealing with this very complicated disease. I am very optimistic that tonight will be better as I have just had some wonderful spiritual healing from a very special lady. With love and blessings to you all xxx


Thank you Monika,love and blessings to you too x


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