Question
I WAS DIAGNOSED WITH SCLERADERMA 4 YEARS AGO AND IT SEEMS THAT I CONTINUE TO HAVE OTHER PROBLEMS WITH IT. FIBROMYALGA,DIABETES,RAYNAUDS,ARTHRITIS,MY FEET AND HANDS  SEEM TO GIVE ME ALOT OF TROUBLE WITH SWELLING AND BURNING ALL THE TIME. I HAVE SEEN A PODIATRIST AND HE TELLS ME THAT I HAVE SO MANY FACTORS INVOLVED THAT THE PROBLEM WITH MY FEET GO ALONG WITH IT ALL. I ALSO HAVE BEEN HAVING PROBLEMS WITH MY SHOULDER JOINTS THAT ARE CONSTANTLY HURTING NO MATTER WHAT THE DR. PRESCRIBES FOR THEM I DO HAVE ARTRITIS IN ALL MY MAJOR JOINTS. I AM 46 YEARS OLD AND AM HAVING A VERY DIFICULLT TIME TRYING TO KEEP WORKING. ARE THER ANY NEW MEDS THAT PROMISE SOME RELEIF FOR THIS DIEASES?

Answer
There are some promising treatments for severe, life-threatening scleroderma and complications of scleroderma.  Stem cell transplant vs the chemo drug Cytoxan is being tested right now, and a recent study showed Cytoxan preserved lung values in people with active alveolitis.  Tracleer and Viagra are being used in pulmonary hypertension and for the treatment of severe digital ulcerations, and another new PH drug may be on the market before the end of the year.

For those of us who've had the disease for awhile, there may be hope in a therapy that involves drinking small amounts of, believe it or not, purified bovine collagen.  The results from a large study on it were mixed _except_ in the patients participating who had had scleroderma for a longer time.  More study is ongoing.

As for the day-to-day coping, work with your doctor to find the right treatments for your symptoms.  Fibromyalgia is a common complaint, and mild exercise has been shown to help FM.  The Scleroderma Foundation www.scleroderma.org offers a videotape of yoga exercise specifically designed for scleroderma patients.  Also, some mild pain killers can be of help in the most unrelenting times, when that ache _just won't go away._  (Can you tell I've had personal experience with this?)

I also have OA and am unable to take anti-inflammatories due to kidney complications, but I've actually found a difference in using a glucosamine/chondroitin combo.  It's not much, but it helps.  Talk to your doc about the right dosage for you.  Physical therapy has saved my sanity more than once with shoulder pain - it may not feel great at first but over time it makes a difference.  Pain killers can help you get past that little voice in your head screaming, "You want me to stretch WHAT??"

If you're not on calcium channel blockers for your Raynaud's, it might help to ease some of the Raynaud's attacks.  There's a trade-off, though.  Calcium channel blockers tend to loosen the valve between the esophagus and stomach, allowing acid to splash up in into the esophagus.  Of course, scleroderma itself does this, too, so you may already be on an acid-reducing medication.

I'm afraid there's no easy answer for the swelling and burning in your hands and feet.  You're obviously already working with a podiatrist, and s/he's knowledgeable about all that's going on to complicate your feet problems.  I can only say that, for the hands, mine have eventually settled down.  But for many years, I couldn't get rings on or off and just chose not to wear any.  Don't size your rings based on what your swelling is like now becasue it may change.  Use built-up, "ergonomic" tools/utensils/pens to put less stress on your hands.  OXO Good Grips is an excellent line of kitchen and other tools for us.  And ocupational therapy can help keep your hands as flexible as possible under the assault from scleroderma.

Surely, the most common life-wrecker in scleroderma is profound and unrelenting fatigue.  It's really difficult for others to understand when we say we're tired.  They say, "Okay, go rest."  They don't understand that no amount of rest or sleep fixes it - that we can wake up as tired as we were when we went to bed. The only treatment I know of for this is to give in to the fatigue.  Sounds counter-productive, and it is!  You don't get much done when you're resting all day, but your body will thank you for it later.

I know what you're thinking - how am I supposed to work when I'm taking meds, doing yoga, doing PT and OT, and resting all day?  You likely can't.  Taking care of yourself with these diseases is a full time job.  But, of course, quitting working is a personal decision only you and those who love and support you can make.  A lot depends on what sort of disability insurance you have, if any, and whether you're in a relationship where someone else is helping to pay the bills.

You can get more information at that Scleroderma Foundation website, and if you're in the US, they can locate a chapter or support group near you, and even a scleroderma treatment center.  Support groups are a great place to share information and vent your frustrations.  You know that everyone there understands, and you may have info to help someone else, too.