No doubt the disease seems aggressive to you but If you were diagnosed 3 years ago and still don't have a contraction that is not all that aggressive. I went from Zero to 45 degrees in about a year, so things could be worse.

Your pain is another matter. I didn't have *any* pain with my first hand but I do on my other hand. I have talked to people who had full surgery just to stop the pain. It can be significant. The literature that GPs read is just wrong.

Your best bet is to find a doc who will do Cortisone shots. A lot of them. This will slow the disease and give you some relief. Don't wait.

Newman: Contact Dr. Kline's office on dosage.

Thanks for the information.It's the pain and weakness in both my hands and arms that is getting worse that concerns me.I'm trying to build a picture of this desease,but get confusing results,it's all the unknown,having never heard of this condition and reading people's experiences,I see that there is not a typical path that DC takes.I feel it's aggressive as the mass in my right palm grew in a matter of 12 weeks,I actually felt it growing,which is strange, but yes I'm lucky not to have contracture yet!!Been to my GP today and she's refering me to hand surgeon,hopefully the injections will be discussed and also radiation therapy,read somewhere that this can help too.I'm aware of similar sensations in my lower legs now,but have no lumps in my feet,so am trying to ignore this,I tryed this method with my hands as well but alas here I am.

Susan,

You are doing the right thing in seeking early medical treatment. And like everyone else you have been referred to a Certified Hand Surgeon (CHS). The good news for you is that unlike most you will find a wealth of info. here and through our links. Correct, this disease is unpredictable and different for everyone.

As you will soon learn, the only thing that 90% of CHS will recommend is full Open Surgery. Because of the riggers and expense they like to wait until you have a contraction of about 45 degrees. Meanwhile, you will be told to do *nothing* but wait for the Knife.

Don't do any such thing. Been there. Done that. Explore and exhaust your options.

Dear Susan,

I am very much at the beginning of what you talk about but can sympathise. I got nodules in my right hand and at the same time had a burning/tingling sensation in both hands. The sensation went up my arms, my neck and shoulders, even my face (!). I did not have much luck with doctors here in the UK. I saw a hand surgeon and am now on my second rheumatologist. I was the one who diagnosed myself with DC, the doctors kept dismissing it as nothing to worry about. This with pain at night, stiffness in the hands in the morning, aggressive growing nodules etc. Quite unbelievable. I did find that drinking 2-3 litres of cold mineral water over the course of a day made significant difference to the pain in my arms and neck. The hands are still sensitive and feel dry and 'thick'(?). I have not had any treatment yet but am starting anti-inflammatory pills tonight after seeing the rheumatologist. I am going for blood tests tomorrow morning checking for inflammatory signs as the pain is not supposed to be associated with DP. The worst is not having this diagnosed and yet knowing its happening and feeling it happen day by day. Try the water, it helped me.

I know exactly what you mean. I feel that one can deal with most things once one has fully defined the problem. The challenge here is that no doctors want to actually diagnose it as DC, they come up with things like "this swelling is not outside the norm". This may be but relative to a hand that was completely nodule free 4 months ago, this is well outside the norm! This DC (if that is what it is seeing as nobody will categorically state that what I have is definitely DC) is such a confusing syndrome as it does not have a defined course and there does not seem to be a test that definitively identifies it. They seem to diagnose from the symptoms but then again there are many other syndromes that produce similar symptoms so you begin to feel uncertain as to what it is you are dealing with which makes it so difficult to deal with....because its the unknown!

I had more blood tests today and the results take about 10 days due to the type of things they are testing for. I was advised by the rheumatologist to leave the nodules alone as manipulating them and pushing and prodding them may cause inflammation and that could be the reason for the pain. I have done this since yesterday and the pain has been better. Incidentally, I tried holding an ice pack last night for about 20 minutes and that calmed down the pain quite a bit too. I was able to sleep the whole night through which was good. I did not take my anti inflammatory pill last night (first of 14) as I read it may interfere with blood test results. I am going to start tonight and will let you know any results.