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.