Scleroderma v. Raynauds

[SjoGirl]

Have any of you been down the path of having been diagnosed with either scleroderma or Raynauds and how did your doctor determine which was which? I've was diagnosed with Raynaud's years ago but due to some changes in symptoms a doc wondered yesterday and my rheumatologist has hinted that it might be scleroderma.

The issue is with my fingertips which are experiencing deep fissures that don't want to heal. My fingertips are numb and so painful I told the doc if they said they needed to be cut off but if they did I'd feel better I might say do it. My hands feel tight and it's not the joints but the skin and my nails have been growing but as soon as much comes in they tend to shred.

Any insight would be welcome.

[Robi5]

I don't have all the answers, but thought I would reply just to start things off.

I have Raynauds for the past 10 years.  Its particularly bad in my hands and causes me to dread the cold damp northwest winters.

My sister is officially diagnosed (I think it was via blood test), while in my case my Rheumy just looked at pictures I took of my hands while I was having a Raynaud attack and just told me what it was and put it in my file.  So I'm diagnosed just my his affirmation if that is even possible.

What your describing doesn't sound like Raynauds.  I have no tightness of the skin, or shredding of nails.  The pain you experience with Raynauds only lasts as long as the attack, which is triggered by cold (and sometimes stress).  It shouldn't be constant pain when your hands are warm.  It pretty much revolving around the blood vessels and nerves inside the fingers and toes.  Exterior symptoms like you're experiencing seem more like scleroderma, but I don't have much experience with that.  Would be worth investigating.

[meirish]

I would agree with Robi5. Scleroderma is often described as the tightening of the skin. This can happen in many areas of the body with this disease. I would think it would be wise to pursue the diagnosis of Scleroderma. I would want to find out what is going on as there are medications that can help with this issue.

I have never heard of Raynauds causing a tightness in the skin. If you look up the symptoms of Scleroderma you will see tightness listed. You may not have it but if it was me I would want to have it ruled out. The sooner one can get a diagnosis the sooner medications can be started in many of these autoimmune diseases.

Some people will see a Dermatologist for skin issues like this. I guess it would be good to ask for a referral from a doctor that you think will keep your needs in mind. Good luck. Let us know how things come out. meirish

[Linda196]

There are several antibody tests for scleroderma, and Reynauds isn't diagnosed with any specific lab value (ANA and/or Sedimentation rate may be elevated), usually only observation and possibly a nailfold capillaroscopy. During the test, the doctor looks at the skin at the base of your fingernail under a microscope or magnifier to look for deformities or swelling of the tiny blood vessels, to determine if it is primary or secondary Reynauds.

I don't want to add concern, but Scleroderma can affect internal organs as well as the skin, so early diagnosis and treatment would be very beneficial. I think I would press for antibody studies at this point.

[SjoGirl]

Hello all thanks so much. My rheumatologist does not think it is Raynauds. She wondered if I have something called Mechanics hands disease which is a symptom of myositis. When I look at photos of mechanics' hands that is what my fingers look like.

I've been diagnosed with myositis in the past but I have a raft of diagnoses not all based on testing. I see her in April, she is going to run some antibody tests that I suspect I've not yet had.

My dermatologist ordered a heavy-duty steroid which I plan to try this weekend. I have also been using Aquaphor and white gloves at night, at least that helps a little bit.

Your thoughts and support are all greatly appreciated.