Disability Caucus
of the United States Green Party
Resources for People with Disabilities Displaced by Hurricane Katrina
Providing Shelter for People with Chronic Fatigue Syndrome & Fibromyalgia
by Cyndi Norwitz
cyndi@tikvah.com

Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) is a common, but little understood, syndrome. Often mistaken by doctors as depression and by laypeople as laziness, CFS/FMS is in reality a painful and crippling illness.

The primary symptom of CFS is severe unmitigating fatigue which is made worse by exercise and activity. The primary symptom of FMS is pain in the soft tissues of the body. Although the pain is felt mainly in the muscles, it usually originates in the connective tissues. Many people with FMS who don't have a diagnosis of CFS find that light exercise clears out "blockage" and reduces pain. But when FMS is more severe, exercise will make the "blockages" worse. Some people with CFS do not have the pain associated with FMS.

Both tend to have a long list of possible symptoms which include "brain fog" (a feeling like your head is filled with cement), difficulty with mental focus, sleep disorders, digestive problems, and headaches. Chemical sensitivity is a hallmark of this syndrome although many people with CFS/FMS have not tried reducing their chemical load as part of their treatment. Nevertheless, most people with CFS/FMS will be helped by following the guidelines in the Multiple Chemical Sensitivity guide.

Many people with CFS/FMS are on the edge of functionality and need to maintain routines that work for them. Many patients take pain, sleep, or other medications which they may have run out of since being displaced from their homes. Others rely on nutritional supplements and herbs which may not be seen as essential by shelter and emergency health care workers but are just as necessary to them as medications. Some people use both. Others utilize alternative/adjunctive healthcare such as massage therapy, physical therapy, acupuncture, chiropractic adjustments, formal and informal stretching routines, pool therapy, baths, and other treatments which help reduce pain.

Because the crashes that result from overdoing physical activity can be so devastating, some people with CFS/FMS use wheelchairs intermittently. Some only when they leave the house and some in the home. These and other adaptive equipment may have been lost in the hurricane, flooding, or evacuation. Although people with CFS/FMS (without other disabilities) are able to walk, wheelchairs and other equipment can be vital to their ability to function.

It is important that shelter and other staff working with people with CFS/FMS help them to restore as many of their routines, equipment, and healthcare access as possible. For those that take medications, continuing on them is vital; but just as important is the continuation of nutritional and herbal medicines, healthcare resources, and adaptive equipment. This is not the time to make changes in what works for people.

For shelters or host families that require labor from those staying with them, people with CFS/FMS may not be able to help out as much as it might appear that they can. Although fatigue can have many causes, for people with CFS/FMS, it is not depression or grief or a lack of desire to help. Although certainly the emotional aspects of this disaster will be a part of all survivors' situations. Pushing the person with CFS/FMS to do more than they reasonably can will only lead to a crash (some patients are bedridden for days or weeks at this point) and a worsening of symptoms.

Shelter and emergency housing residents with CFS/FMS may be able to help out less physical ways. Telephone work, tasks done while sitting, paperwork, and other things will help them feel like they are contributing without risking a crash.

Since sleep is impaired in most people with CFS/FMS, they may need more attention paid to the sleep environment than most. Low noise and light levels, a bed that doesn't aggravate soft tissue pain, and more time allowed to sleep can be helpful.

Note that most people with CFS/FMS also have a diagnosis of, or the symptoms of, Multiple Chemical Sensitivity. These three are basically the same syndrome with different primary symptoms. Please also read the guide to Providing Shelter for People with Multiple Chemical Sensitivity.

Katrina survivors with CFS/FMS, and their friends and family, are welcome to join the support list Immune at http://www.immuneweb.org/.

Any shelters or others who serve Katrina survivors with Chronic Fatigue Syndrome and Fibromyalgia are welcome to contact Cyndi Norwitz for information on accommodating these people safely. (707) 775-4475 (9am-9pm Pacific Time except in emergencies) or cyndi@tikvah.com.