Confused about digital scleroderma/sclerosis, what symptoms would you have?

I have Raynauds, SLE, APS and Sjorgens. I recently saw a new registrar who trained under Prof Caroline Gordon. She would like to change my diagnosis to MCTD. Her letter to my GP talks about my hands, amongst other things.

I have contractures, and bent fingers, with a palm that won't straighten. My fingers swell like sausages, especially my little finger which won't go down and is bent over from the first joint. I have complained about tightness on my fingers and hands for some time to no avail.

Now my elbows won't straighten and are so painful, I am sure it is connected but the gp says not. Anyway it appears it is a possibility my hands are either digital scleroderma or sclerosis or diabetic cheirarthropathy.

Gp says no to diabetic option as am type 2 diabetic for only 4 years and under control. They think it is to do with the inflammatory arthritis. I am aware either way nothing can be done.

I don't have ulcers on my fingertips, just occasional chillblains, my feet are worse. My toes are also swollen like sausages and bending over. I can't see how it could be scleroderma, although I admit it could be a possibility. I do have swallowing issues but put that down to the sjorgens.

I would assume that if I had scleroderma symptoms that my raynauds would be worse? I also assume that having diabetes and a connective tissue disorder that it was a double whammy to my hands. They are so painful, to use, skin on fingertips is so thin and gets dry and cracked and splits.

Any advice or experiences welcome. My next rheumy appt is soon, am sure the scleroderma antibody is negative along with the MCTD antibody. I hate it all.

3 Replies

  • wow Dizzy - you got some stuff going on there ! my heart goes out to you.

    I have diffuse scleroderma and raynauds, for the last 16 years, and your symptoms sound very similar !

    However, scleroderma usually lets itself known with a positive ANA test so i would be asking for another one of these.

    Have you seen the raynauds and scleroderma's website ? there is some great information on there which may help you, as well as you could take some leaflets into the medicas at your medical appointments. these autoimmune diseases still remain a bit of a mystery to the medical community as well as they are very busy so any support we can give them by raising awareness has got to be a good thing ? !

    I use pawpaw lotion on my hands and since using, I have found that my fingers are not as stiff. I like you have very painful, sensitive finger tips - I have to wear gloves for almost every activity !

    I hope that you get your eureka moment soon in knowing what exactly is causing your symptoms so you can focus on your restoration to well being.

    Best wishes to you ,

    Living the dream :) x

  • Hi!

    My hands turned into clenched fists. With my finger nails 'growing' into the palms. And my right little finger weirdly twisted into the one next to it. Also my arms bent at the elbow, so that they crossed my chest.

    Well, not anymore! I have used a combination of Bowen and hot stone massages. I have 2 two therapists who really understand how the body functions.

    Now my arms are practically straight and I no longer have to sleep in the 'death pose' . Which was really uncomfortable. And my fingers are straightening, so that I can even wear a dress ring (expandable)!

    Also, I refused the offer of a knob on my steering wheel. I forced my fingers around it, so that they are being exercised without me noticing it :)

  • Skwiglee,

    I am excited and encouraged to hear how well the Bowen and hot stone massages are working for you. my daughter was diagnosed with linear scleroderma of the hands and feet at 9 years old. The doctor started her on a regimen of methotrexate and physical therapy / occupational therapy. Included in the therapy was craniosacral and myofascial massage (which sounds similar to your massage techniques). I dont know if any of those treatments were more important than the others, but i am happy to say that 3 years later she is doing very well. No more therapy and they are weaning her off the meds. Could be a winning combination for others as well!

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