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Dear CFS & FM Friends

  [ 107 votes ]   [ Discuss This Article ]
By Eunice Beck, RN • • August 31, 2001

Dear Friends,

As some of you know, I was the guest in the chat room a few weeks ago. It was something I had never done before, and was a lot of fun, although, with the comments and questions coming so fast and furious, I was glad to be able to go back and read the transcript that came in the August 14 email bulletin. There were several questions that concerned issues too long to cover in a chat.

One of the people in the chat room asked “what questions should I ask my rheumy (Rhuematologist)?” We all want to get the best, most knowledgeable care possible, especially considering what many of us have gone through just to get a diagnosis. The first question one should ask, perhaps even before making an appointment should be whether or not the doctor treats Fibromyalgia and/or CFIDS patients. Usually, the front office personnel will have a pretty good idea what type of patient the doctor treats. The Rheumatologist should be familiar with the diseases but may chose to treat other types of patients such as rheumatoid arthritis. It is very helpful if the doctor has other FM/CFIDS patients so he is acquainted with the various symptoms and treatment modalities.

When you are going to a new Rheumatologist, or any other new doctor, there are several things which would be helpful to take with you. It would be helpful for you to gather up as many of your medical records, reports, etc. as you have available. Either make copies for the doctor to keep, or be willing to leave your records for a time. The doctor will not be able to review all of them while you are there, and will want to look at them at a later time. I suggest making copies so you are sure to retain the records that you have. Another thing you should take is a list or your medications, including supplements. List the medication, the dosage, and how often you take it. And alternate is to take all your medications with you, but a list makes it much easier for everyone.

Another person in the chat said, “if I tell the doctor all my symptoms, won’t he think I’m crazy.” Yes, all of our symptoms can sound crazy, but there are a couple of ideas to help with that. During the week or two prior to your doctor’s appointment, keep a diary of your daily symptoms, fatigue and pain level, and activities. This will give you and the doctor a reference point. It is also important to make a short list of the symptoms which are the biggest problems, and which you would like to be dealt with first. We all have many symptoms, but some are more difficult for us than others.

Other areas which can be covered in later visits include recommendations regarding your medications, and supplements. What would the doctor suggest that might work better for you. This is usually a trial and error process, and it is up to you to let the doctor know what type of response or reaction you had to the medication. It is usually a good idea to change only one thing, especially if it is a prescription medication, at a time, so you know what works and what doesn’t. This can be a painstaking and slow process, but it is the most successful method. Otherwise it is difficult to know what the response, good or bad, was, and from which medication. However, the time this takes can get very frustrating.

I’m sure one area all of you will need to discuss is pain management. This implies medications, but can also be a referral to a pain management specialist for specialized types of injections, which may help particular problem areas such as low back. Another part of managing the pain can involve physical therapy, exercise and massage therapy. Acupuncture is also used in pain management. All of these methods can be helpful for some patients, and you need to discuss them with the doctor. Most insurance plans will pay for physical therapy when ordered by your doctor. If you see a chiropractor, your rheumatologist should also be aware of this treatment.

Another important area to cover, with the rheumatologist, or your doctor is mental health support. This is a difficult disease to cope with, not only for us, but for our families. Stress or anxiety are triggers for many of us. Counseling, especially with a counselor trained in pain management, can be immensely helpful. Not all counselors have the special training, but they can still help you with ways to deal with your stress, depression, anger, and anxiety in a manner which will be less detrimental to your mental and physical health. Another resource the doctor or a member of his office staff may be able to supply is contact with a local support group. No one, not even the doctors understand what we are feeling better than others who share our disease. If there is not a local face to face support group, or you are not well enough to go to one, there are many online groups, including the chat room and message board at

I hope this covers the most important things you need to prepare to see a new doctor. Remember, you will not be a able to cover all of these things in one visit, so decide what is most significant to you. As you continue to learn about your disease, write down questions to ask the doctor at the next visit, or take copies of things you have read for his opinion. Reaching some level of functionality has to be a combined effort. You and your doctor are a team. Take care and be well,

Yours in health,

I welcome your comments and questions at: My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well. Eunice

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