Lupus: Support and Survival

Caring for Yourself and Reducing the Stress
For many people with lupus, the disease isn't a major illness. But for some, it's a serious condition.

Recognizing when your symptoms are getting worse and knowing how to treat them can reduce your chance of permanent tissue or organ damage. Early treatment can also reduce the time you spend on higher doses of medications, which can cause serious side effects. Working with your doctor and taking medications only as prescribed is important.

Because ultraviolet light can trigger a flare, use sunscreens with a sun protection factor (SPF) of at least 15 and avoid tanning beds even if your symptoms don't include skin problems. You should avoid being in the sun when it is at its strongest, 10 a.m. to 3 p.m.

In addition, managing lupus means taking good general care of yourself. You can take the following steps to improve the function of your immune system:

  • Get adequate rest and regular exercise.
  • Don't smoke. Smoking increases your risk for cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
  • Limit alcohol. Alcohol can affect your liver, kidneys, heart and muscles, and may interact with your medications.
  • Eat a healthy, low salt, low saturated fat balanced diet.
  • Take vitamin and mineral supplements after consulting with your doctor.
  • If you're a woman with lupus and are considering pregnancy, seek medical counseling to determine what steps you can take to ensure the safest possible pregnancy. Planning and preparing for pregnancy can help reduce risks to you and your baby.
  • Regular aerobic exercise to build up endurance, and rest as needed.
  • Avoidance of both physical and emotional stress which may cause flare-ups.
  • Get enough sleep. You may be able to get by on 8 hours a night, or you may need more.
  • Plan for additional rest periods throughout the day, as needed.
  • Do not exhaust yourself.
  • Getting enough rest does not mean no activity at all. A well designed exercise program is important to maintaining strength, endurance, and overall fitness.
  • Every week, make a simple plan of your work and activities. The plan can help you organize the events of your life and ensure that you have a good balance of rest and activity.
  • Each day, review your plan and decide if you are physically up to the activities for that day. Be flexible; if you don't have the strength to do an activity today, do it another time.
  • Don't try to complete a large task or project all at one time; divide it into several steps.
  • Dealing with stressful issues and problems takes a lot of energy. If  you feel stressed out, talk with your doctor or nurse. They may be able to provide you with help for your problem or direct you to someone else who can.
  • Join a Lupus Support Group .. You are not alone in this disease and the support you will receive from fellow Lupus survivors will keep your stress level to a minimum.

Stress And Lupus
By: Dr. Craig Hassed, M.D.

"The mind in addition to medicine has powers to turn the immune system around."
Jonas Salk

There is presently an enormous explosion of research in how stress affects the body. A lot of this research focuses on how the mind effects the immune system. The technical term for this field of study is psychoneuroimmunology, or PNI for short. PNI has major implications for autoimmune and inflammatory conditions like arthritis and lupus. Immune cells or White Blood Cells are like the body's defense system and they are continually patrolling the body.

Anything which they see' as self they will leave alone, and anything which looks foreign they will destroy. The problems occur when the WBCs do not destroy the things which they should, like infections and cancer cells, or destroy tissue which they shouldn't, like joints as in rheumatoid arthritis and lupus. These latter sort of conditions we call autoimmune because the immune system is turned against the self.

The communication between the mind, through the brain and on to the immune system takes place via nerves, which are like the hard-wiring , and through hormones and chemicals called neuro-transmitters which are like a blood-borne postal system.  The immune cells also send messages back to the nervous system, especially the part of the brain concerned with emotion. Thus we are finding out about the complicated mechanisms which explain how it is that thought and emotion have such a powerful effect on illnesses.

It has been well shown that when a person is chronically stressed, anxious or depressed that the immune system works poorly. Like people, when stressed we tend to over-react, under-react, become inefficient and make mistakes. When we are happy, focussed and at peace with ourselves then we work better and the immune system also works more efficiently and makes fewer mistakes. It is as if the body is mirroring what happens in our minds. The mechanisms are infinitely complex but the principle is simple: a healthy and happy mind is fundamental for a health body. As Marsilio Ficino, a great philosopher, once said:

"The body is the shadow of the soul."

If we are stressed then inflammatory conditions like lupus, asthma, rheumatoid arthritis or dermatitis can be aggravated. Rheumatoid arthritis (RhA) is very similar to lupus but unfortunately less research has been done on lupus than RhA. Nevertheless PNI research has shown many interesting findings. For example, in stressful situations some people will actually be shown that their immune systems work better. This is because stress only has a negative effect on the body depending on how we see the situation.

If we have learned to cope well, stay calm, keep things in perspective, keep optimistic and not make `mountains out of molehills' then stressful life-events have very little negative effect on the body. However, if we have very poor ways of coping with stress then even small events can cause major problems. So, the important message is that every investment in coping with stress better seems to protect us from the negative effects of illness. Either we don't get sick when we otherwise would, or if we do get sick we do not get as sick.

Lifestyle factors also influence immune function. Healthy behaviors like exercise, managing stress, getting enough sleep, eating balanced meals, not smoking, eating breakfast, and working moderate hours were all associated with better immune function. Stress and depression also make a healthy life-style more difficult to maintain and effective stress management makes it easier to make healthy changes.

It would seem that meditation promoting better mental health, a positive attitude, good social supports and humor are all powerful in improving the function of the immune system. As previously said, autoimmune diseases are where the immune system attacks healthy tissue as if it were foreign, in other words it sees self and not-self.

In genetically `at-risk' individuals the immune cells may have previously encountered an invader like a virus or antigen which the immune cells mistakenly thinks looks similar to healthy tissue. In such cases the immune system gets fooled in a case of `mistaken identity'. Exactly how the emotional state can effect this process of immune recognition is not clear. PNI offers potential to start to explain some of the triggers and aggravating factors for autoimmune conditions.

To illustrate, a recent study of rheumatoid arthritis patients found that stress in the prior week was clearly associated with increased inflammation, pain and disease activity. Lupus is also significantly affected by stress. The authors conclude that, "comprehensive treatment of SLE requires management of life stress."  There are other studies but unfortunately it is easier to attract funding for studies into new drug treatments than it is into the softer' areas of science.

One innovative study, however, did test the therapeutic potential of stress reduction benefiting the disease by examining journal writing as a form stress release. Patients with moderate to severe asthma and rheumatoid arthritis were randomized into two groups. Both groups had usual medical care but one was given the exercise of writing in a journal for three consecutive days about the most stressful event in their lives.

Four-month follow-up showed that the group that kept the journal had significantly fewer symptoms and reduced disease activity. Interestingly no psychotherapy or processing the events was required to produce the benefit. Other inflammatory conditions such as psoriasis have also been shown to be amenable to meditation in helping this skin condition to clear more quickly when combined with orthodox medical treatment.

Elsewhere it has been shown that in the treatment of the inflammatory condition called dermatitis combining relaxation therapy, cognitive behavioral therapy, and an education program with standard medical care lead to significant improvements in the condition and a reduction in the need for steroids. All these psychological treatments were superior to education alone or standard medical care.

Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.

Lupus Foundation of America., Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
301-670-9292  800-558-0121

Information gathered from :

Searching for  ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online.  LUPIES has been a wonderful gift.  I have learned more from the information I found on the support web site from other sufferers of Lupus than I did from my doctor.
Thank you fellow Lupies!    With a very special thank you to Deanna!
May your days be pain free!

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