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Note: Many people believe that improvement is difficult when a case of CFS or FM is severe. The experience of Bobbie Brown, a CFS & FM patient from Arizona, offers evidence that patients can get better.
Bobbie has taken the CFIDS & Fibromyalgia Self-Help Program's course and participated in its support groups. She reports that she has improved from 10%-20% of normal to 35%-40%.
Bobbie's List: Reasons Why I've Improved
When asked to explain what she has done to improve, she listed the following:
- I started taking a supplement called Dr. Shulze's Super Food*
- Pre-emptive rest (I rest a lot)
- Fruit & yogurt smoothie everyday (plain yogurt, frozen fruit-smoothie blend fruit and frozen blueberries with fresh strawberries and bananas) then I put the Super Food in it
- A great chiropractor
- Do my stretching and exercises in the pool/have a Jacuzzi tub for pain
- Don't drive myself more than 10 miles from home/don't drive at all on bad days
- Use pain killers only as needed
- I take Celexa for depression/nerves
- I bought the self-help course textbook and joined the classes and support groups
- I found a great church and volunteer 1 1/2 hours a week and teach Sunday School!
- Our children and families moved near us after we moved here for my health (grandkids make me very happy)
- Cut down on computer time
- Cut down on phone time
- NO STRESS: I trained friends and relatives to bring no stress through our front door
- Stay away from situations that have too much input
- Don't try to be the head of the family and plan events
- Don't have dinner parties for more than a couple of people at a time/then order out
- Don't stay too long at others parties
- We only take trips that are within 6 hours of where we live and can drive
- Stay home a lot and watch good movies on bad days
- Stay positive and joke about my special problems
- I got an electric scooter so I don't have to restrict my outings so much (baseball games, mall)
- My husband does all the shopping, most of the laundry, most of the cooking, vacuuming, etc
- I do not work anymore
- I have not had sleep interruptions for several months! Makes a big difference!
Comments
A long list of coping strategies is consistent with the experience of other people in our program. There is rarely a single, magic bullet for people with CFS and FM. Rather, most patients find they are helped by using a variety of approaches, often including both medications and self-management techniques.
Two items in Bobbie's list refer to medications. She also reports using non-drug treatments for pain. Most of her strategies, however, involve changes in her daily habits and routines.
She uses pacing techniques such as taking regular, scheduled rests and living within limits. In fact, almost half her items are techniques for setting limits on herself, including limits on:
- Driving
- Computer and phone time
- Stress and sensory input
- Socializing
- Travel and time outside the house
- Household and family responsibilities
Other factors she mentions include good nutrition, exercise, support, helping others and good sleep. In addition to these regular practices, Bobbie and her husband have also made two larger lifestyle changes. Bobbie is no longer working and they moved from Nevada to Arizona to improve her health.
Bobbie's experience is a good example of a patient taking responsibility for her health by combining the use of resources from the medical system with lifestyle changes.
*Note on item 1: Bobbie's use of this supplement does not imply an endorsement from the CFIDS & FM Self-Help program. While people in our program use a variety of medications, supplements and other treatments, the program does not recommend any specific products.
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