Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online self help courses for ME/CFS, and fibromyalgia patients in moderated discussion group format, with free follow-up programs & support.
One important set of relationships for people with CFS and fibromyalgia is those they have with their doctors and other healthcare professionals.
Given the complexity of chronic illness and the likelihood of having several medical problems, you may assemble a group of providers to help you live better.
Physicians: Medical doctors often seen by CFS and fibromyalgia patients include both primary care physicians and specialists. Among the latter are:
• Rheumatologists (doctors who specialize in arthritis and related illnesses, including fibromyalgia),
• Psychiatrists (doctors who specialize in mental and emotional problems and who prescribe medications for problems like anxiety and depression),
• Doctors who specialize in pain management,
• And doctors who treat sleep disorders.
Other Medical Providers: Doctors may refer you to physical or occupational therapists, who can help you address problems through physical manipulation, exercise training and adjustments to daily activities. Many patients also receive spinal adjustments from chiropractors.
Other Sources of Help:
• You can receive help with emotional problems triggered by long-term illness from psychologists and therapists. They work both with individual patients and with families.
• Massage therapists provide relief with hands-on treatment.
• Nutritionists address problems with nutrition and food allergies.
• You may also get help from teachers and group leaders if you join exercise programs or take classes in subjects like yoga or Tai Chi.
It is reasonable for you to expect some things of the people helping you. They should know about your illness or be willing to learn about it. They should believe your illness is real, treat you with respect, and be willing to experiment to find treatments that work in your individual circumstances.
You should have realistic expectations of your providers.
• Since there is so far no cure for either CFS or FM, it is appropriate to focus on treating symptoms to improve your quality of life.
• Since there are no medical treatments that are consistently helpful for people with CFS and FM, you will probably have to try several to many to find what works for you.
Finding a Doctor
How do you find a doctor who is knowledgeable and whom you trust? One good starting point is referrals from fellow patients. Support groups offer a good way to meet other patients.
• The CFIDS Association of America maintains a state-by-state list of CFS support groups in the United States. They will mail a list of groups in your state at no cost. (You can contact them at 800/442-3437 or email your request to SupportGroups@cfids.org.)
• The Arthritis Foundation sponsors fibromyalgia support groups in many places in the US. For information on groups and physician referral lists by area, visit their website (www.arthritis.org/).
• For other lists of FM support groups, see the website of the National Fibromyalgia Association (www.fmaware.org/) and also the ProHealth.com website (www.prohealth.com), which also has listings for CFS groups.
Other resources for finding doctors include:
• The “Good Doctors” list at Co-Cure (www.co-cure.org/Good-Doc.htm),
• The FMS Community website (http://fmscommunity.org/findingadoctor.htm),
• Devin Starlanyl’s site (http://www.sover.net/~devstar/provider.htm),
• [And a relative newcomer, at ChronicFatigueTreatments.com, which offers a growing listing of CFS doctors in the US, UK, Canada, and Australia.]
Making Doctor Visits Productive
With long-term illnesses like CFS and fibromyalgia, both you and your healthcare providers have different roles than in acute illnesses. Because your condition is an ongoing one and you are the day-to-day manager, the patient/provider relationship is more appropriately a partnership.
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How can you make good use of your doctor visits? We suggest you think of them using the phrase “take PART.” The letters mean Prepare, be Active, Repeat and Take action. (This acronym is adapted from advice about doctor/patient relationships in The Arthritis Helpbook by Kate Lorig and James Fries.)
Before the appointment, make a list of your questions or concerns.
Are you worried about a new symptom? Would you like to try a new sleep medication? Write down your concerns, recognizing that probably no more than two or three issues will be addressed in one visit.
As part of your preparation, consider rehearsing a concise description of your symptoms and situation.
Studies suggest that doctors allow around 20 seconds for a patient to describe her concerns before interrupting, so be prepared to state succinctly your concerns and what you want from the doctor.
If you are uncertain that you can explain yourself adequately or remember the doctor’s response, consider asking someone to accompany you to the appointment.
Begin the visit with a brief description of your main concerns. For example, you might start by saying something like, “I came in to talk about improving my sleep. I’ve been having trouble falling asleep and I wake up several times during the night. The drug I’ve been taking doesn’t seem to be effective any more.” If you have a written list of concerns, give it to the doctor.
In addition to making a clear and concise statement of your concerns, take an active role in the meeting by interacting with the doctor.
• If you don’t understand something, ask her to explain it again.
• If you think a proposed treatment won’t work or you are unwilling to try it, tell the doctor.
• If your insurance doesn’t cover all the proposed treatments, make your financial constraints known.
If the doctor suggests a medication, ask:
• What is the purpose of the medication?
• How and when should I take it, and for how long?
• How soon will the effects appear?
• What are the most common side effects and what should I do about them?
• What are my other options?
• How and when should I report to you about my experience with the drug?
To check your understanding, repeat back to the doctor the key points she has made. For example, you might state that you understand the doctor is planning to prescribe two medications for sleep, one to help you fall asleep and the other to help you stay asleep.
If you aren’t clear, ask the doctor to repeat. The purpose of repeating is to make sure that you and the doctor have a common understanding of the discussion and to clear up misunderstandings of the diagnosis and of the steps you will take after the visit.
As the visit is ending, ask yourself if you have everything you need to take action after the visit is over.
• If you discussed a medication, did you receive a prescription?
• If so, do you understand how long to take the drug, how many times a day and at what hours, how long it will take for effects to appear and what side effects to expect?
• What about follow-up? Does the doctor want you to return and if so, how soon? Is it OK to check in by phone or to contact her only if you have a problem?
If you are not clear about what you should do as a result of the visit or you are not certain you can remember, write down the doctor’s instructions or ask the doctor to do so.
“Managing Your Medications.” Medications can play a useful role in managing CFS or fibromyalgia. Even though they won’t cure either condition, they can help you to control symptoms and reduce suffering. While drugs often produce benefits, they can also create problems. This article discusses five common problems with medications and what to do about them.
This article is reproduced here with the author’s kind permission from his CFIDS & Fibromyalgia Self-Help website (www.cfidsselfhelp.org).
Note: This information is general, meant for support and educational purposes only, and is not intended to substitute for medical or other professional advice. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.