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Scleroderma Specialist?

QUESTION:

Hi Dr. Carterton, I'm a 53 y/o woman, otherwise very healthy and active, who was
diagnosed about 5 years ago with limited systemic scleroderma after having
gradually worsening symptoms, (Raynauds, "broken" blood vessels at the base of
my fingernails,puffy, red chapped looking skin on my fingers, and increased
fatigue and general achiness that seemed worse than normal aging), for several
years prior to my diagnosis. What I've noticed in the process of researching
scleroderma is that there seems to be very little information addressing the
sensation of fatigue and general malaise that is usually listed with other
auto-immune and connective tissue disorders I've read about.  When I read the
posts of others on support forums, this seems to be very much a part of the
experience of many, if not all, of us with different variants of scleroderma,
yet when we report this to our Dr.s as something that impacts our lives in a
very negative way, it seems that many of us get the "catch all'' fibromyalgia
diagnosis on top of the scleroderma.  It is frustrating in that I believe it is
the scleroderma that causes these debilitating and depressing symptoms, yet it
isn't acknoweledged as it is with, say, Lupus, or Rheumatoid Arthritis.  My
rheumatologist put the fibromyalgia diagnoses in my medical record and stated there that I was positive for 11 tender points, when she never tested me for
that!!  I'm a registered nurse and tested myself when I began to feel something
wasn't right and was doing some research on my own before I was diagnosed with
positive antibodies, capilloscopy, etc., and my pain is not typical of
fibromyalgia.  I see a lot in the support forum online with others who have
difficulties with fatigue and muscle and joint aches/pain who, like me, are
having problems in our personal lives with relationships, and the ability to
perform activities that were not an issue for us in the past.  I'm very with the
lack of studies and confirmation addressing this in scleroderma patients.  What
are your thoughts as an autoimmune specialist and do you have any suggestions
for us to have this issue addressed? I have a problem with having what I believe
is an unconfirmed and seemingly, "catch all", type diagnosis of fibromyalgia,
when I believe it is the scleroderma causing the problem.  What are your
thoughts?

Dr.Carteron's Answer:

the first things to check relate to the fatigue - You'll need to rule out iron deficiency anemia, low thyroid, pernicious anemia (low B12); consider if heart or lung dysfunction is present; consider possibility of autonomic nervous system dysfunction-then consider if the fatigue is inflammatory or non-inflammatory, which may be Fibromyalgia or depression etc. Speaking personally, I don't think adding the label of FM when someone has an autoimmune process helps much.

Consider discussing with your Rheumatologist that the Dx of FM does not feel like a good fit for you, especially with your expertise and experience as a Registered Nurse. Even ask her to document this point in your chart. Share with her information that is available out there-hopefully she is receptive.

The Scleroderma organization, www.sclero.org, has alot of info on their website about fatigue and Scleroderma   www.sclero.org/medical/symptoms/fatigue Also, if you go to PubMed and and search Scleroderma and Fatigue, you will find peer-reviewed articles on the association and then provide a brief synopsis of your findings to your doctor.   The Sjogrens Foundation site also has patient info on Fatigue (www.sjogrens.org ) , but I think there is literature out there to support your observation and that of others to whom you refer.

Good Luck!

Dr.C


Printed from: http://www.sjogrensforum.com/ask-the-doctor/scleroderma-specialist/ .
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3 Comments   »

  • Diana says:

    Hi I was dx'd with Sjogrens in 2012 after a very long bout of weird symptoms a high ANA, but neg sjs antibodies one slightly high for antiphosolipid. Last year I had the worst weakness and fatigue, my left leg would swell, and the thigh muscle always weak and tender. I have terrible digestive problems and am on omemprizole 40 mg twice a day, and creon 4 pills at meals. Also developed red dot like blood vessels on my face and all over, along with a red inflamed color around my fingernails, and what looks like brown flecks in the cuticles. Over the winter my hands got so cold they felt like they were burning, then would tingle like pins and needles as they warmed up, but no dx of raynauds. The finger thing worries me the most my palms are also blotchy and the fingerpads always red and a bit puffy.

    I was told that only two things cause that and one is dermatomysis sp:? And the other scleroderma, considering I have autoimmune thyroid disease, inflammatory bowel disease and sjs, could any of those cause the blood vessel and fingernail changes? Or is it always sclero and dermatomysis? My doctor seems to think something is emerging, but I really dont want it to be that.

  • drcarteron says:

    Diana - you may find a brief comment to your Q on the first page of the blog http://www.sjogrensforum.com and under Symptoms section.
    Thank you for sharing your story.
    dr c

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