|Coping With Scleroderma|
|Tuesday, 27 July 2010 23:53|
Coping with Scleroderma
By Jane Brandenstein, P.T., University of Pittsburgh Medical Center
As physical therapists, there are some things that we have learned over the years about Scleroderma, and there are even more things we wish we understood better and could share with you. But, the information is just not there at this point in time, so as health professionals, we experience a certain amount of frustration, just like you do. What we would like to pass on to you are some of the things that we have found to be helpful and important.
One thing we do know is that exercise is imperative in order to maintain the highest level of functional independence possible. We find that you can and should do different things on different days. There are several types of exercise and any or all can be beneficial for you, depending upon your particular needs. These can be range of motion, stretching, strengthening, and/or conditioning/aerobic exercises. Our suggestion is to do range-of-motion exercises to all joints after a warm shower, first thing in the morning to "get things going." Then, later in the day, set aside another period for exercise. It may be helpful to take a pain relieving medication, such as an extrastrength Tyienol one hour before you do your exercise program. Depending on how you feel, you can really stretch those tight areas, strengthen the weaker ones, or do something aerobic, like walking, hiking or even swimming. Basically, the second workout should target the areas that need work.
We have found that warm applications are beneficial prior to stretching exercises. Some examples of heat include paraffin baths for hands or feet, electric moist heating pad (for example, the thermophore), microwaveable hot packs, and warm showers or baths. These heat applications should be warm, but not hot as you could bum your skin. Use these for 15 to 20 minutes, no longer than half an hour. If you are having joint aching or stiffness, you can use the heat several times followed by the stretching exercises.
When doing range-of-motion and stretching exercises it is very important to go as far as you can, even to the point of pain and hold at this end of the range point for at least ten seconds. Do not bounce with the exercises; a sustained stretch is more beneficial. Sometimes it is helpful to have someone else help by giving some additional pressure at the end range position to get a better stretch. Common areas that experience tightness are the hands, mouth opening, and neck areas, but many other areas can be involved. There are many instances where the skin tightening eases off, but if you have not been stretching you will not be able to take advantage of this. You must seriously think, "use it or lose it" for each motion. It is really important to take each joint through the full range-of-motion each day and to note any changes from the day before. If an area is stiffer, then be a bit more vigorous to get that last degree of motion.
Strengthening is another important part of a general exercise routine. Lifting your arm or leg against gravity is actually strengthening and may be the beginning of the program. You could then move to elastic loops (Therabands), cuff weights, or machines for resistance. We do not normally recommend the use ofbarbells this is too much stress on the tiny hand joints. Therabands are available in any Physical Therapy (PT) clinic and work well for strengthening. The best thing when using a Theraband is to make loops in the end to go around your wrist or ankle and tie the other end to something strong. A visit to a physical therapist may be beneficial for instructions. We suggest you do strengthening on an every-otherday schedule. This gives the muscles a chance to recuperate from the activity.
Conditioning exercises help with endurance. These exercises can be in the form of walking, riding a bike, or swimming in a heated pool. These activities are good unless you have been told by your doctor to avoid them. The best exercise is something that you want to do. There is no competition; do what you can, but DO IT! If you are unable to tolerate twenty minutes, start with a few minutes and gradually increase. Be pleased with what you are able to accomplish. These types of exercises increase your cardiovascular fitness, which helps combat the fatigue, and also help you to feel better about yourself. If you are going to be swimming, it is important to maintain skin health with moisturizing creams. Those with a high glycerine content seem to be helpful to many folks.
Physical Therapists are real fans of group exercise programs, as you derive encouragement from each other and it is not quite as boring. You make a commitment to yourself and your friend that you are not likely to break. There are two programs that are designed for people with any or all types of arthritis. The Arthritis Foundation and health professionals specializing in inflammatory diseases approve both. PACE is People with Arthritis Can Exercise, a land-based group program, and the AFYAP (Arthritis Foundation/YMCA Aquatics Program) is a program of warm water swimming exercises. Both are taught by people specifically trained in the programs and who are aware of the limitations or cautions important to you.
The following exercise suggestions may be helpful. They are a good start, but they are not all inclusive. It may be helpful to see a physical therapist for evaluation and recommendations to help with your exercise program. Many times it is helpful to have a professional to ensure that you are working hard enough. There are many therapists who can be very helpful to you, but may not have worked with a patient with scleroderma before.
Again, we would like to reinforce the importance of doing some exercises every day. The stretching may be painful, but it is imperative. We would also like to stress that you not start any exercise program without the full approval of your physician(s).
These exercises are to be done daily, preferably early in the morning after heating your stiff joints. Each exercise should be repeated five times. After several days of performing the exercises, try to establish an estimate of your range of motion and the level of pain you have for each joint. On those days that you find either decreased motion or increased pain in any joint or muscle area, you should continue to use heat and repeat exercises three additional times for those areas. In this manner, you should be able to detect limitations and prevent the loss of motion of a joint. You should decrease the number of exercises temporarily for only I those areas where an acute flare-up has occurred (hot, painful, swollen joint), and increase them when the flare subsides.
All exercises are designed to limber up muscle and joint stiffness as well as maintain maximal joint motion. These exercises are to be performed in your bed, if firm enough, or on any other flat surface while lying on your back, and without pillows.
Pinch or tighten your buttock muscles together tightly, holding for five seconds and relaxing 10 seconds.
Place a rolled-up towel under each knee. Tighten the muscles on tops of thighs and hold for five seconds, and then rest 10 seconds. This exercise will pull the kneecaps up toward your hips while you are attempting to straighten the knees and lift your heels off the bed. Your buttocks must remain resting on the bed.
Arm and Hand Exercises
Arms at sides, elbows straight, hips and knees bent. Palms turned toward body, raise both arms back over your head, leading with your thumbs as far as possible in a slow, wide arc of motion. Slowly return to starting position and relax 10 seconds.
Sideward Elevation (Abduction/Adduction)
Arms at sides, elbows straight, palms upward, hips and knees bent. Slowly slide arms out to the sides and up over your head as far as possible, leading with the thumb. Slowly return to starting position and relax 10 seconds before repeating. Be sure to keep the elbows as straight as possible.
Elbows away from body as far as possible, up to level of shoulders with elbows bent 90 degrees and resting on bed with fingers pointing to the ceiling and palms toward the body. Hips and knees bent. Rotate your shoulder while attempting to touch little finger to mattress at hip level.
Elbow Flexion and Extension
Start with arms straight at your side, with palm resting on bed, and hips and knees bent. Start by turning palm up and bending elbow in an attempt to touch your shoulder Then turn your palm away from your face and attempt to touch your opposite knee while attempting to straighten the elbow as much as possible. Repeat with your other arm.
Finger and Wrist Flexion and Extension
Arms at sides, fingers pointed toward toes with palms facing body. Start by curling or bending fingers and attempt to touch tips of fingers to palms. Then bend wrist as far as possible away from hips. Slowly straighten fingers as much as possible and bend wrist toward hips as far as possible. Return to start and relax.
Leg and Foot Exercises
Hip and Knee Flexion and Extension
Legs flat on bed with toes and kneecaps pointing straight up to ceiling and heels four to six inches apart. Start by bending your hip and knee. Slide your foot straight toward your buttocks as far as you can, still keeping some part of the foot resting on the bed. Hold, and then slide back down to the starting point and relax. Repeat same exercise with the other leg.
Hip Abduction and Adduction
One leg lying flat with toes and kneecap pointing straight toward the ceiling, and the other leg with the hip and knee bent 45 degrees or approximately halfway with foot resting flat on the bed. The exercise consists of sliding the straight leg out to the side as far as possible while keeping the toes and kneecaps pointing straight to the ceiling, and then sliding back to the same starting position. Reverse leg positions and perform the same exercise with the other leg.
Internal and External Rotation of Legs
Legs out straight with heels four to six inches apart. Roll knees in toward each other. Then roll outward, and then relax.
Foot and Ankle Range of Motion
Legs flat on bed and heels resting on the bed at all times, start by pointing feet down with toes bent. Then point feet up with toes bent up. Then point feet in with toes relaxed; next point feet out with toes relaxed.
These exercises should be done daily, slowly, and without causing increased pain.
The following list of facial exercises has been prepared by the Physical Therapy Department of PresbyterianUniversity Hospital of Pittsburgh. The exercises are designed to:
Insert a stack of tongue depressors, bound by a rubber band, into your mouth from your front middle teeth to your back molars on one side. Use only as many tongue depressors as necessary to stretch your jaw. Repeat to the opposite molars.
Article originally published in "Scleroderma Foundation Newsline," vol. 2, no. 3, Summer/Fall 1999
Source: Scleroderma Foundation