Tuesday, 15 September 2009 10:43
The Bay Area Scleroderma Support Group
has published a quite useful checklist of items, which has been found useful to Scleroderma
patients. They have noted that the list is by no means comprehensive, but is intended as a guideline to assist Scleroderma patients, and was developed by patients themselves. We would encourage each patient here to print a copy of this guideline and keep it close, for regular reference. The original checklist has been modified for our own local context.
Anticipate And Deal With The Stress
Being diagnosed with Scleroderma can be a stressful
event. Although some people feel that seeking help in any form is a sign of weakness, others feel it is a sign of strength that you are able to reach out for knowledge and assistance. The sooner you get helpful information, the sooner you can start healing physically and emotionally. Seeking counseling is a good idea because there can be overwhelming issues to the entire family, not just the person diagnosed with Scleroderma
. Counseling can help in coping and dealing with the diagnosis, even if you think you are doing okay. It can't hurt to get some guidance and have someone to talk to who is trained in dealing with these issues. Counseling may allow family members to express feelings that they would be uncomftorable doing in other environments.Be Good To Yourself
Use Lotions And Moisturizers
- Get plenty of rest
- Take vitamins
- Join/contact Scleroderma organizations
- Join/contact Scleroderma support group. Research has shown that people who participate in support groups generally do better than those who don't. Encourage your spouse, partner, or other support individuals to attend with you.
Use lotion to keep the skin moist; it is important not to allow your skin to crack - it is difficult to mend. Some lotions people have used are:
Dealing with Raynaud's Syndrome
- Bag Balm or udder cream - used to soften udders of animals; can apply at night.
- Lubriderm lotion mixed with Golden Touch Lotionâ by Chamberlain (6 squirts to 2 squirts mixed in palm of hand and applied to entire body immediately after bathing, while skin is still soft and moist.)
- Crisco or other shortening. Wear cotton mittens or gloves to keep from getting on bedding.
- Use hand/feet warmers which can be purchased at some local sports and international clothing stores
- Use glove liners to help keep warmth inside gloves.
- Small disposable chemical packs that warm up when shaken are great to keep in the glove compartments of cars, in your purse or backpack, at home, etc. Be careful not to place them directly next to your skin.
- Write down on a small card all medicines you take and carry it with you. This may be very helpful when you go to the doctor.
- Write down questions and new symptoms as you think of them. Use your list to review with the doctor.
- Keep an ongoing log of symptoms and medicines and results and use as a reference during your appointment.
- Keep a log of your "Skin Score". (Pinch test to see how mobile your skin is - Ask your rheumatologist how to do the test)
Get baseline readings if possible for the following
- PFT (pulmonary function test). This measures the capacity of your lungs. The ability for your lungs to diffuse oxygen is very important and can be harmed by Scleroderma.
- Chest X-ray or CT scans, Echocardiogram (of heart). Tests to establish mechanical function of heart.
- CBC (complete blood count). Also include thyroid, hemoglobin and hemocrit, creatin
- ANA (Anti-Nuclear Antibody), SCL-70, Antitopoisomerase Tests. Tests used to diagnose types of Scleroderma.
- Blood Pressure - Very important to monitor to detect early symptoms of kidney failure - an increase in blood pressure may indicate pending problems. Also many people with Scleroderma have very low blood pressure, but some medicines can cause blood pressure to increase rapidly, and some conditions can cause it to do the same. If you have headaches, are lightheaded, etc, call your doctor immediately. Learn how to measure your own pressure, either using a manual system (cuff and stethoscope) or purchase an automated system. Keep a daily log of your blood pressure, there a may be a significant difference compared to what the doctor may see in his office. Again this is very important!
- Have the lab use a butterfly needle when drawing blood. It is much smaller and can be used more successfully in Scleroderma patients.
- Have them tie the rubber tourniquet on top of your clothing instead against your skin to prevent injuring or pinching your skin.
- Try to warm your hands before having blood drawn - this helps with blood circulation.
- Be certain they open and use a clean needle kit!
- Use pens that are easy to grip, such as the fatter ones with a rubber grip. Use pens that that don't have a removable cap such as Papermate Flexigrip.
- Use kitchen utensils and knives with large, ergonomically designed handles
- Long handled BBQ tongs help to retrieve items on high shelves, laundry from the dryer, items dropped on the floor. Get one with handles that you can grip and are not too wide for the spread of your hand. Back scratchers or anything long are helpful for reaching items also. Rubber grippers - help to open jar lids, hold knives while cutting, hold spoon handles while cooking.
- Use a low stool to sit on while working near the floor or retrieving items from lower cabinets. Use Bottle openers, nut crackers, etc.
- Do exercises. Keep moving. It is very important to stretch your muscles daily. Water aerobics for arthritis patients is a low-stress environment that can be helpful to keep you mobile.
- Do finger and face exercises to keep the muscles in your fingers and face flexible. Your mouth can start to shrink without you realizing it, so keep opening it wide and stretching your lips and jaw. The same is true with your fingers. Bend each finger at all the joints, backwards and forwards gently.
- Get massages to help increase circulation and to make you feel better.
- Keep copies of all doctors' notes, PFT's, medical tests, lab work, etc. Ask your doctor to help you get or send you copies if necessary.
- Use sunscreen to protect your skin from the sun. Use sunglasses to protect your eyes. Do not take anti-inflammatory medications if you have stomach or gastro intestinal problems.
- Watch for changes in your skin color or pigmentation and note symptoms as they occur. Some Scleroderma patients get a "nice tan" without going into the sun.
- A good sense of humor and a positive attitude are very important in your overall well-being. More studies are showing this helps to contribute to longevity. Wrinkles are good!
- Visit our website regularly for more information.