ANSWERS TO COMMON CFS QUESTIONS

Posted in the Fidonet CFS Echo
Date: 02-21-95
From: Mary-teresa Schmidt

1. What do I say when my friend is having a bad flare-up and I don't want to sound condescending, but it happens a lot.

A: When someone is hurting, it is always hard to figure out what to say. Sometimes a hug goes a long way when words come up short. Ask if they would like to go for a short drive, if they need an Rx picked up. Ask them if they would like something from the grocery store so they don't have to go themselves. Ask if you can help get them to a local support group meeting. Ask if they need help filling out forms for disability, food stamps, etc. Then do it. Talk is cheap. Action means the world to someone with CFS.

2. My spouse can't do anything around the house anymore and it looks awful. I work all day. I'm getting upset and I know it's not his/her fault, but I wish s/he would do their share. I can't do it all.

A: You're right when you say it's not their fault. If your spouse is housebound and can't clean, cook, or do laundry, they feel just as bad as you do, if not worse. Some people reconcile themselves to a lower standard. However, this can be just as unhealthy, lying on the couch with piles all over. Do you have family, friends or neighbors who might help every couple of weeks if you ordered pizza and made it a community thing? No one wants you to destroy yourself to be a caretaker. Is there someone you know who needs some extra money and won't charge an arm or a leg to come in and clean once a month? Can you start a caregivers cooperative, where all the spouses in the support group go to one house a week and tidy up? Don't use your energy for anger, frustration or grousing. The patient can't and shouldn't do those things anymore. Use your energy to get a creative solution for both of you.

3. The doctor said this is all in my brother's mind and he should see a psychiatrist. But he's sick, so how could he be wishing this on himself?

A: Do you want to be sick? Does anyone really want to feel this way? It is doubtful. Apparently his doctor doesn't read anything about the illness. Help him find a doctor in your area who does. It's not easy. It can make an incredible difference in your brother's life to get adequate medical care. With a better doctor, he might get help making the pain manageable and sleep thru the night again. It has been difficult to get adequate care. It is importnat to remember that medication is available that will help in a flare-up.

4. I took my daughter to the mall and she had to sit at almost every bench, and had to go to the bathroom several times. When we stopped to eat she seemed out of it. Was this a bad idea? What can we do next time?

A: Next time rent a wheelchair. If she can usually walk, a long walk or standing for a long time can cause big problems with severe pain and an unbelieveable amount of fatigue. Avoid that from the first by telling her that she will enjoy herself more if she's not in severe pain. Let her help manuever the chair, if she can. If you make a big deal out of it, she will be embarrassed. If you make it a matter of fact, it will go much more smoothly. Make an adventure of finding the elevators in the store. And about the bathroom -- just find one and get there. Again -- matter of fact and no dramatics.

5. My son's teacher refuses to understand what is happening to my son. The teacher thinks he is school-aphobic. He loves school and misses it terribly. But when he's ill, I have to stop him from going. The teachers won't listen. Meanwhile, my son is falling behind.

A: According to Public Law 94-142, your son is entitiled to adequate education in the least-restrictive environment as possible. If it means tutoring, or video camera in the classroom and a phone line to participate, then so be it. You and your child have rights and if you need to approach the principal or school board or the state education director, go for it. Fight for it and win.

6. A friend of mine and I went to a local drug store and she bought a cane. I know she's been in pain, and having trouble with balance sometimes, but that took me by surprise. Why was I so upset?

A: You have an image in your mind of every one you know, and how they really look. This drastically alters your image of your friend. It also made the "invisible disability" visible. For the first time, you saw her as disabled, whereas it was easy to ignore before. It was probably an agonizing decision for her to admit that help was needed, then change her image, not only in your eyes, but everyone elses' as well. Now she will have to answer questions, put up with stares and wonder if people will ask what happened to her. This illness may last any length of time. You will need to see if you can still be the fun friends you have always been and not pull away, which would be easier to do.

To help you understand, here is a list of symptoms a patient can have. Keep in mind that they never have just one at a time. Usually, CFS patients experience 2-10 at a time and they can change from day to day, morning to afternoon. 1) Clinically evaluated, unexplained persistant or relapsing chronic fatigue that is of new or definite onset; is not the result of ongoing exertion; is not substantially alleviated by rest; and results in a substantial reduction in previous levels of occupational, educational, social or personal activities. 2) The concurrent occurrence of 4 or more of the following:

sore throat
tender lymph nodes
muscle pain
multi-joint pain without swelling
headaches of a new type, pattern or severity
unrefreshing sleep
post-exertional malaise lasting more than 24 hrs

These symptoms must have persisted or recurred during 6 or more consecutive months, and must not have pre-dated the fatigue. Other symptoms:

Neurological: photophobia, spots, forgetfulness, irritability, confusion, difficulty thinking, inability to concentrate, depression.

Cognitive: spatial disorientation, speech/reasoning difficulties, blurred vision, eye pain, frequent prescription changes, psychological problems such as anxiety, panic attacks, personality changes, emotional problems.

Chills, night sweats.
Shortness of breath, dizziness, balance problems.
Sensitivity to heat and cold.
Intolerance of alcohol.
Irregular heartbeat.
Abdominal pain, diarrhea, irritable bowel.
Low temperatures.
Numbness/burning in face or extremities.
Dryness of the mouth and eyes.
Hearing disorders/sensitivity.
Chest pains.
PMS and endometriosis.
Skin hypersensitivity/rashes.
Allergies/sensitivities to odors, chemicals and medications.
Weight changes without change of diet.
Hair loss.
Lightheadedness, feeling in a fog.
Fainting, muscle twitching and seizures.

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