Dealing with doctors is so frustrating with illnesses like CFS & Fibromyalgia. Back when I first became sick, CFS was rarely heard of and it was around the time when “yuppie flu” was heard instead of CFS. Most doctors didn’t believe it existed at that time. Today, there has been a lot more reported on CFS & Fibromyalgia (especially Fibromyalgia) and getting a doctor who believes is a little easier -but getting treatment hasn’t really gotten any better. Because doctors don’t know what to do. There are places now like the Fibromyalgia and Fatigue Centers who can help with the symptoms, but unless you have lots of money, it’s hard to keep up with the regimen.
There have been many doctors and many times that I would have loved to have thrown something at doctors trying to tell me that the illnesses are all in my head, that I’m just depressed, and that I need to cut out stress and work less. They made me feel (or I allowed them to make me feel) like I was a 2-year-old being punished for eating one too many cookies or something.
I personally have had a hard time trusting doctors (rightfully so) and still find that even after all of these years that I hate even bringing up new symptoms I experience. I have a great family doctor, but it’s hard to get past all of those years of ignorant doctors. I doctor shopped for years before I finally found someone who would listen to me and take my illnesses seriously. We can’t give up. There are good doctors out there. We just have to keep plugging away until we find them.
Jenny Fransen, RN, and co-author of The Fibromyalgia Help Book: Practical Guide to Living Better With Fibromyalgia offers great advice and tips on working with your physician when dealing with CFS and/or Fibromyalgia.
- Prepare for the visit ahead of time to make the best use of your short time together.
- Be sensitive to your own symptoms and concerns and give some thought to the questions that you might ask your doctor.
- Keep a list handy to jot questions down between office visits.
- Consider other resources for information, such as your pharmacist for medication questions.
- As there is no magic bullet for Fibromyalgia, great patience is required to find a combination of therapies and medication to bring about improvement.
- Recognize that there will be inherent frustrations for patients and physicians when treating a condition that continues to hold many mysteries for the researchers.
- Realize much of your treatment is up to you: exercise, relaxation, stress management, pain management, pursuing additional therapies and treatments such as biofeedback, spray and stretch, and massage.
- Learn as much as you can about your own disease, since you are the one who will manage the day-to-day problems that occur.
- Actively manage Fibromyalgia-related problems, such as pain, sleep problems, etc.
- During office visits be prepared to ask for what you need to manage your Fibromyalgia. Be as specific and as concise as possible. Don’t ramble.
- Work with your physician to develop a plan of action should you have a flare-up so you can initiate treatment on your own. Can you increase your sleep medication or take ibuprofen for pain? What else can you do during a flare-up to reduce symptoms and feel better?
- If you are having symptoms of depression, inform your physician. Depression can further disrupt sleep cycles and will need treatment.
- Reinforce and thank the doctor for specific behaviors and techniques you find helpful. “I appreciate that you really listen to me, Dr. Olson.”
- Learn to ask for what you need from your physician. “Would you explain to me what can be done to help me sleep better?”
- Develop a good relationship with the doctor’s nurse and receptionist. Identify rules of the office: doctor’s day off and when the best time is to call and leave a message. Know the nurse’s name and ask for him/her when you call. Be patient if they are unable to call back immediately.
- Identify any bad feelings you might have about delayed diagnosis, insensitive treatment, etc. Resolve these if possible with the appropriate person, in person or by letter. In this way, you avoid carrying bad feelings toward healthcare providers into future relationships.
- Should you and your physician have difficulties, try to identify problems and work to resolve them. You can put your feelings into a letter if you aren’t able to express them in person.
- Avoid angry or defensive communication.
- If your physician has told you to return in three months, you can make an appointment earlier to discuss your questions or concerns if necessary.
- If a problem arises with medication or treatment, ask if you can call for an answer rather than make another appointment.
- Be assertive and take responsibility for your own treatment.
- Remember you are in charge of your own treatment program.
To read the entire article, please visit this link on ProHealth.
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