Keeping Hands Flexible

by Elaine Sobin, (originally published in "Scleroderma Voice," 2002 #3)

You simply must fight scleroderma’s impact on your hands. From my own non-expert experience, the only alternative is a slow, inexorable progression to what I saw at a scleroderma meeting: a lovely lady who had both hands frozen into clenched fists, still feeling pressure. Fortunately, she had a kind husband who did everything she couldn’t.

I’ve had scleroderma for some 40 years, luckily not too badly. Except for needing to have my esophagus stretched, my only problems have been small mouth and curling fingers on both hands.

When my rheumatologist referred me to a hand surgeon, my right thumb was under the forefinger, and the skin on my hand felt so tight over the knuckles it looked as though the skin would split. Not a vein or bone was visible. It felt like I was wearing a drying leather glove, or a giant was crushing my hand.

Paraffin treatments could do nothing for the pain deep in my palm. The high-powered jets in the Jacuzzi at my gym penetrated deeply enough, but they may have helped destroy my CMC joint (below the thumb, at the wrist), which the surgeon ended up replacing.

Making a Commitment to My Hands

After my joint replacement, I had physical therapy three times a week for a month. It was minimal, but my hand liked it.

If I could see improvement with that (I asked myself), what would happen if I committed myself to all-out warfare? We owe it to ourselves to see veins and bones in our hands, a little bending in previously frozen knuckles, soft and pliable skin, and remission from crushing pain.

Now I exercise my hands one to two times daily. If I skip a day, the skin starts to harden.

Below I describe my hand routines.

Heat and Massage

I like my heating pad set on high, wrapped around my hand for 15–20 minutes.

When I was getting therapy at the hand institute, for massage they used a therapeutic hand lotion. But my hands love Bag Balm in a green can, bought at a local feed store. It’s the thickest, gloppiest, most penetrating cream I’ve tried.

I divide the can into smaller plastic bottles to keep it as fresh and uncontaminated as possible.

I recommend you massage it into both hands, even if you think only one hand is “bad.” I was amazed to find (see below) the pinky of my “good” hand had less strength than the pinky of my “bad” one.

Keep massaging and wringing every centimeter of your hands until you can almost feel it going under your skin. Take more cream if you need it.

Stretching and Bending Hand Exercises

Perform every motion to the utmost of your capacity, firmly but gently. If a motion feels useful, repeat it 10–20 or even 30 times. You say time is money, and you can’t afford to spend this much time? Your return on this investment will be more valuable than money.

Note: Try to alternate stretching and bending exercises.

1. Holding your four fingers with the other hand, press the fingers away from your thumb. At the same time, stretch your thumb as far away from the fingers as possible.
2. Try to bend the knuckles on all four fingers at once, as far as possible, using the other hand to apply pressure.
3. Now try to bend the knuckles on each finger individually, as far as possible, applying pressure with the thumb on the other hand.
4. Press both hands together, trying to straighten your fingers at the knuckles. Also try to press each hand backward at the wrist, as far as possible.
5. Keep massaging the flap of skin between thumb and forefinger.
6. Press a couple of fingers of one hand between each finger of the other hand.
7. Stretching your hand from thumb to pinky (as hard as possible), twirl and stretch each finger with as much effort as possible in one direction and then the other.

Exercising with Toys

Note: You can also do your mouth exercises while you do these.

Balls: I happen to have a pretty stiff foam-rubber baseball and a beanie-bag-type of squeeze ball, so I’ll squeeze each ball 60–100 times with each hand.

Weights: I have the old-fashioned 2-pound iron dumbells. Bend your arm, holding a weight in each hand, and curl your wrists only up and down slowly 30 times. Turn your hands facing the other way and repeat. Then holding the dumbell with two fingers only, curl the dumbell up and down 30 times; repeat till all fingers have been used.

Clothespins: Holding a clothespin between thumb and forefinger, press 30 times. Repeat with thumb and all fingers. (This is when I discovered my “good” pinky was actually weaker than my “bad” one.)

More Ideas for You

Add, subtract and tailor the exercises above to your own needs.

I try to do some exercises wherever I am. Examples:

• The driver’s wheel in my car is a great place to press curved knuckles straight; when you are a passenger you can do the same thing on the elbow rest.
• One of my favorite places is the Jacuzzi because of the heat and moisture (though I can only stand it 10 minutes or so). With your palms spread next to your body, raise yourself by your hands, concentrating on straightening your fingers. (If this is too hard, I highly recommend Aquasize or working out with a “noodle.”) Also, flatten your palms and try to raise one finger at a time.

If you have the opportunity to work with a good therapist—unfortunately, I’ve seen and heard a lot of horror stories—you’ll have a good idea of much pressure you, or someone working with you, should apply.

I’m still working on refining my routines, and trying to find what works best for me. For me, as for all of us, hand therapy is a work in progress. But for now, I am keeping some flexibility in my hands, and the crushing pain is gone.

The Scleroderma Foundation recommends that you consult with your physician before embarking on this or any other treatment or exercise regimen.

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