Scleroderma, Myositis and Vasculitis: Symptom Management and Activities of Daily Living

Autoimmune diseases have symptoms that frequently overlap across multiple disease diagnoses. Below are descriptions of some of these symptoms, as well as ideas on how you may be able to manage your response to and exercise some control over them. Always consult your physician or occupational therapist if your symptoms change or worsen, and discuss your symptom management plan with them to find the best strategies for you.

Raynaud’s phenomenon

Raynaud’s phenomenon (RP) is a condition that causes the fingers or toes to blanche and turn white. Primary RP is ideopathic, while secondary RP is most commonly with associated connective tissue disorders such as scleroderma, vasculitis, myositis or lupus. The arteries can suddenly constrict in response to cold or stress. This arterial spasm can last for as long as 20 minutes but may be controlled if you respond to the early warning signs, which include:

  • achiness or pain
  • color changes (white or blue)
  • numbness
  • clumsiness with your fingers

Short-term strategies for managing these symptoms include:

  • applying gloves
  • carrying hand warmers (like the ones used for skiers)
  • keeping your core temperature up with a scarf, vest, or another layer of clothing

Long-term strategies include:

  • avoiding nicotine
  • reducing caffeine (which acts as a chemical vasoconstrictor)
  • eating smaller meals (which can reduce the body’s need to direct blood flow to the digestive organs and keep more blood in the outer parts of the body and extremities)

Joint pain and muscle pain

Autoimmune diseases can cause inflammation and pain in the muscle tissue. There are often cycles of exacerbation and remission and it’s important to respect the pain. (The “no pain, no gain” principle does not apply here!) Be gentle with yourself when you’re experiencing an acute flare-up, and avoid strenuous workouts during an acute phase of any autoimmune disease – particularly myositis. Some, limited therapeutic exercise is recommended for people with autoimmune diseases. On the other hand, putting too much strain on your body can have an undesirable effect: You can do damage to the muscle fibers themselves. Do gentle stretches instead to maintain flexibility and functional movement. It is important to keep your joints mobile to prevent stiffness (contracture). Seek out the help of a physical therapist to assess your problem areas and develop a personal program to address them.

Malaise and emotional issues

In addition to the emotional shock you may feel when you first receive your diagnosis, feelings of malaise, suppressed mood and depression are often side effects of these diseases. A patient with a recent autoimmune disease diagnosis said that he just “lost the spark” to get things done, and that he’d lost some of the joy in his life. Many patients experience similar feelings, but you don’t have to go through it alone. It is recommended that you discuss symptoms with your doctor and seek out help from a counselor. Ask your rheumatologist if they can recommend a counselor who may be familiar with chronic, autoimmune diseases. In fact, your whole medical team will play some part in helping you learn practical strategies for managing your emotions.

Fatigue

Fatigue is a common symptom that can require serious work-around solutions. Patients have described this to me as a “deep” fatigue that feels as though it is “reaching into their bones.” Although others may think you “look” fine, this fatigue is not imagined. It’s real and can have a big impact, especially when you are otherwise feeling good and just want to do what you need or want to get done.

The problem is that you may pay a hefty price and deplete your energy reserves if you push yourself to do too much. It may take days to recover because a “good night’s sleep” often isn’t enough. I encourage each individual to listen closely to their body’s messages because excessive fatigue can be prevented with timely breaks – even short ones. These can, in a sense, recalibrate your body’s meter to stop this from affecting you so greatly.

Activities of daily living (ADL)

The effects of autoimmune diseases can often limit your body’s ability to move easily. Prepare for the demands of the day with stretches – moving your joints and stretching your muscles might help you to be more effective in your morning routine. Assistive devices can make daily tasks easier. These can include:

  • sock aids
  • slip-on shoes
  • shower chair
  • jar openers

The "4 Ps" of energy conservation: Plan, pace, prioritize, position

Tips for conserving energy when you have a chronic autoimmune disease.

  • Plan your day, week and month so that you schedule time for rest both before and after strenuous activities.
  • Pace yourself. This prevents the overexertion that happens when you don’t stop to rest during a tough task.
  • Prioritize your tasks. You may find that you naturally prioritize your most important tasks, but it is still a good idea to consciously examine your to-do list and check that you are putting your energy towards the most important things.
  • Position your body so that a task can be performed with the least amount of strain. Ergonomics – how your body position affects activity performance – is an important consideration when doing a task for an extended amount of time or in an awkward position. For example, try sitting rather than standing while folding laundry or cutting vegetables.

An occupational therapist or hand therapist is a good person to include in your health care team. A few visits with a hand therapist may be enough to help you with upper extremity limitations and to learn some new techniques to help you maximize your independence. Realize that there may be times when you need to ask for help, and that’s okay too!

Summary

Living with an autoimmune disease requires different strategies to minimize the impact of symptoms on your life. Learn what you can about your disease and how it can affect the way you live and interact with your environment. Seek out professionals and support groups which can help you manage your disease to the best of your ability. Remember, there are others that have been where you are now. You may pick up strategies in unexpected places, which can help you cope, so keep your eyes and ears open. You may later find that you are the one who passes on helpful strategies and advice to others with similar issues.

John Indalecio is an occupational therapist and certified hand therapist at the Hand and Upper Extremity Therapy Center at Hospital for Special Surgery.

Authors

John Indalecio OTR/L, CHT, MS
Hand and Upper Extremity Therapy Center

 

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