The Lyndonville Journal:

How to Work With Your Doctor

David S. Bell, MD, FAAP

Published in Lyndonville News, November 2001

It is with some sadness that I sit at the computer this morning to write an article for the newsletter knowing that it will be the last one for a while. But, time moves on, and things change. I have been finding that I am going through a dry period of ideas and that when I think of something to write I end up saying, I have already put that in the newsletter. First you start repeating yourself, next thing you know you will be drooling.

But there is a good side to the dry spells. It seems that whenever there has been a dry spell, it is followed by a flood of new ideas, and should that happen again, I will ask Mary and Jean if they want to start up again. This dry spell is not much different from the twenty that have happened before. With each dry spell comes the realization that a particular way of thinking has come to an abrupt dead end. But I have learned something with each dead end. The past five years have revolved around the reduced blood volume and the adrenergic mechanisms. Now I feel sure that all of this is secondary to something else. Time to move on and start reading about acetylcholine and nitric oxide. I had a patient in Boston who, ten years ago, said that it was all involving acetylcholine. I wish I had listened to her more closely.

So, how to work with your doctor, some ideas.

1. Give your doctor the benefit of the doubt. He/she went to medical school and may not be a complete idiot. Many patients that I see are not diagnosed with CFS formally but are being treated with compassion and with the same medications that experts would use.
   
   
2. Focus your visits: Don’t overwhelm the doctor with seventy symptoms. Decide what you want to address and pursue it. You can say something like, I am still exhausted and feel totally awful, but really want to talk today just about the headaches.
   
   
3. Don’t give up after one or two visits. It may take five, six, or seven visits before finding the right symptomatic medicines for a particular symptom.
   
   
4. Learn what works for you. If you have nausea only twice a month, you do not need to take medication for it every day. You should know what medication is the best for you for the nausea and have it in your medicine chest. Take it when you need it and not at other times. There are a lot of symptoms that can be well controlled this way. Unfortunately you have to do most of the work.
   
   
5. Be flexible and know that there are ups and downs. Don’t panic if you have a bad week or two or three. One big problem is that many physicians will always be adding medications and before you know it you are on ten drugs. And still feel lousy.
   
   
6. If a medicine doesn’t help, do not take it. So far all medications are symptomatic. They are not curing some underlying condition. Try medicines and give them a month or so, but if they don’t work, there is no sense in continuing them. It may be difficult to know if a medicine is helping - for example is the medicine helping or am I having a good week. Three separate trials will usually make it clear.
   
   
7. Keep your hopes up. Someday this illness will be given the respect it deserves.
   
   

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