Your Frequently
Asked Questions
(originally published in "Scleroderma Voice,"
2006 #1)
Will eliminating calcium from my diet
minimize calcinosis?
Calcium deposits (calcifications or calcinosis) in
the soft tissues are common in scleroderma. This complication
most often occurs in patients who have scleroderma for
at least five years, and approximately 40% of those
who have had scleroderma for more than 10 years will
develop calcinosis.
Calcinosis is a result of tissue damage from scleroderma
and not a result of having too much calcium in your
diet. Eliminating calcium from ones diet will not have
an effect on this painful complication. Additionally,
it is not necessary to discontinue using calcium supplementation
in an effort to minimize calcinosis.
I live in a cold climate. What can I do to manage
my
Raynaud’s during this winter season?
Living in a part of the country that is not necessarily
friendly for those with Raynaud’s can certainly
be a challenge, but it is not something that can’t
be dealt with by implementing a little forethought and
planning. It is also important to note that those people
that live in warm climates are not without their own
set of challenges and we can address some tips for them
as well.
Clothing
Remember that it is not enough to keep your hands
warm; by keeping your trunk warm too you can minimize
your risk of an attack. Layers of clothing keep your
core body temperature up and will help considerably.
Thermal shirts or undergarments made of 100% cotton
may be more comfortable against skin that is sensitive
from the changes brought on by scleroderma, but can
also contribute to heat loss by trapping moisture. Silk
undergarments have good insulating properties and may
be worth trying. Many people find the new very lightweight
Thinsulate® shirts very helpful for layering and
maintaining warmth. Polar fleece vests or liners under
winter coats and jackets can also be very helpful in
maintaining warmth. You can find these products by visiting
your local sporting goods store, the sporting goods
section of a department store, or through online sources.
 Head
Gear
Keep in mind that 30–50% of your body’s
heat can be lost through your head. There are many varieties
of hats and head wraps to accommodate all of your outdoor
needs. Some come with an additional insulating lining;
others have extra wind or waterproofing. The goals are
to be warm, but minimize sweating as this will speed
loss of heat through evaporation. To help with this,
you may want to try head gear made from wicking material.
Most are made from polyester or other synthetics such
as polypropylene and will have a hang tag indicating
the level of warmth and type of activity for which they
are best suited. Finding a balance may require a little
trial and error, but in the long run will provide you
with long-term comfort. For those who experience Raynaud’s
attacks in their ears,
you may want to consider ear muffs or a band (such as
a neck gaiter or headband). You can also find hats with
convertible ear flaps.
Additionally, 50% more of our body’s energy is
used in the winter by our body’s attempts to warm
the air we breathe. As much as one-third of our body
heat can be lost through breathing. Covering your mouth
with a scarf can help prevent this body heat loss.
Extremities
It is a proven fact that the warmth provided by mittens
is greater than the warmth provided by gloves of the
same thickness. There are drawbacks to using mittens,
particularly if you need any dexterity at all. In this
case gloves may be the better choice for you. Again,
mittens and gloves come in many varieties of warmth,
thickness, waterproofing, windproofing and comfort.
Try on a several types and spend some time talking to
a sales person or investigating options online.
Air activated hand warmers (Grabber, Hot Hands) can
also be beneficial for maintaining warmth while participating
in activities outdoors. These warmers can be purchased
at many sporting goods stores and pharmacies, are very
easy to use, and do not add additional bulk to your
gloves. Many of the newer varieties can provide up to
10 hours of heat.
There are also toe warmers that can be slipped between
your socks and shoes. Remember that insulated, waterproof
boots and shoes should be considered when walking through
the snow and slush that many states experience in the
winter months.
There are many wonderful wool, wool blend, and polar
fleece socks and sock liners available to keep your
feet as warm and as toasty as your hands. (Please keep
in mind
that to accommodate the thickness of some of these socks
you may have to purchase your boots up to one size larger
than usual.)
There is no reason to let vanity prevent you from wearing
the types of clothing and accessories that you may need
to prevent a Raynaud’s event, as manufacturers
are producing more items than ever that combine fashion
with function.
 Cold
Car Issues
Always preheat your car prior to driving. The few
minutes that you spend doing this can significantly
reduce your cold exposure and minimize discomfort.You
may also want to consider a remote car starter so you
don’t have to go outside. (An understanding spouse
or significant other are also good, cost effective options!)
Heated steering wheels and seats are available as options
in some cars and may also be available as aftermarket
options on some car models. These can usually be found
through online suppliers and in car specialty stores.
Dealers may have them available as options even after
purchase, but this is usually more expensive.
If you live in an area with extremely cold winters,
consider an engine block heater. It plugs into a regular
outlet, and can provide almost immediate heat. A dealer
or auto parts supplier can advise what type is best
for your vehicle and needs.
Indoor Heat
It is also important to remember dry inside air from
home heating systems can sap the moisture from you hands
and nasal passages. Running a humidifier during the
winter months can help to return moisture to the skin
as well as to the upper respiratory tract. Although
humidifiers can be beneficial, it is crucial to change
the filter and clean the tank regularly to minimize
the build up of mold and bacteria.
 Skin
Care
Moisturizing frequently will help to prevent chapping
and fissures. Keep a container of moisturizer by each
sink to remind you to apply generously after each hand
washing. Always wear rubber gloves when cleaning or
doing dishes and never expose hands or body to hot water—warm
water is preferable as it is less drying. Moisturizing
your entire body with a lanolin rich product can help
to minimize winter-itch.
There is not one moisturizer that is universally effective
for everyone with scleroderma, but you can obtain the
most benefit from the one you choose by patting (not
rubbing) your skin dry, then applying it immediately,
before water in the skin can evaporate. Again, trial
and error will be necessary when searching for the product
that is right for you.
Dermatologists generally recommend that soap be used
minimally and only when and where needed (for example,
under the arms, the groin and genitals, the feet, and
the face). Milder, less drying soaps may help. Cetaphil®
is a soap substitute that works well for some people.
Air Conditioning
For those who live in more temperate climates, air
conditioning can be as problematic as cold winter air.
The following tips will be helpful to you as well as
our cold weather friends during the summer months.
If you have to go to the grocery store, doctor’s
office, etc. remember to carry hand warmers in your
purse or shopping bag. These warmers can help to ward
off an attack caused by temperature changes as a result
of leaving warm outside air and entering much cooler
inside air. It may even be a good idea to wear a thin
pair of gloves while shopping or reaching into refrigerated
or freezer sections of the store.
For medical appointments, carry a small polar fleece
blanket or afghan to cover yourself during procedures
or while waiting in cold examining rooms. Gloves may
also prove beneficial.
Moisturizing is just as important in warm climates
as in colder ones, as sun and heat exposure can wreak
havoc on the skin, too. Remembering to moisturize daily
and after each hand washing will go a long way to help
minimize problems.
Medications
A commitment to taking your Raynaud’s medications
is the final key to this puzzle. These medications help
to keep blood vessels dilated and oxygen rich blood
circulating to your tissues. Medication and adherence
to the aforementioned lifestyle changes could help reduce
the number of events you experience during the winter.
Over time, preventing as many episodes as possible will
minimize the long-term damage to your blood vessels.
Is difficulty swallowing related to scleroderma
and what can be done to help?
Difficulty swallowing (dysphagia) can be caused by
systemic scleroderma (SSc) and can occur for several
reasons. Approximately 85% of persons diagnosed with
systemic sclerosis will experience some gastrointestinal
symptoms. The most common of these symptoms is gastroesophageal
reflux or GERD. In SSc this is due to a weakening of
the sphincter muscle at the lower end of the esophagus
that leads into the stomach. This sphincter is responsible
for preventing food and stomach acids from washing up
into the esophagus. This weakening permits backwashing
that causes a burning sensation and significant discomfort.
This can happen several times a day regardless of the
type of food eaten. Over time this can cause strictures
(scarring and narrowing in the esophagus). These strictures
can prevent the passage of food through the esophagus
into the stomach.
Esophageal strictures may be identified by a test
called a barium swallow or Upper GI series. This is
an x-ray test used to examine the upper digestive tract
(the esophagus, stomach, and small intestine). Since
these organs are normally not visible on x-ray, you
will swallow barium to temporarily coat the lining of
the esophagus, stomach, and intestine, making the outline
of these organs visible on x-ray. This test is useful
for diagnosing cancers, ulcers, problems that cause
narrowing of the esophagus, some causes of inflammation
in the intestine, and some swallowing problems.
Another reason for dysphagia may be decreased peristalsis
(muscle movements of the esophagus needed to propel
food into the stomach) caused by the formation of scar
tissue in the muscles of the esophagus. Two radiographic
tests may be used to help diagnose the reason for your
dysphagia:
Cine Esophagram
is an upper GI series that takes a look at the swallowing
mechanism. This study is a series of rapid x-rays which
are then viewed in sequence. Essentially, this test
provides the diagnostician with a “motion picture”
of your esophagus while you are swallowing.
Esophageal Manometry
is a procedure for determining how well the muscle of
the esophagus works. A thin tube is passed through your
nostril and into the esophagus where pressures are then
measured.
A stricture can be treated by endoscopy (a tube that
is passed into the esophagus that allows visualization
of the esophagus, stomach and beginning of the small
intestine). While you are sedated, a balloon is passed
through the endoscope into your esophagus and is inflated
in the area of the stricture, reducing the amount of
narrowing. Strictures can recur, so managing reflux
through lifestyle changes and medications is important.
Decreased motility of the esophagus can be harder
to treat as prokinetic medications may not always prove
helpful. Meals should be consumed in an upright position
and a softer diet may be required. A speech pathologist
can help to assess the proper texture of food that should
be eaten and a dietician can help you develop nutritious
meal plans based on that assessment.
Many specialty cookbooks are now available for those
who have special dietary needs. The "I-Can’t-Chew
Cookbook" is a great resource and is available
through our store.
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