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Preparation
Be prepared for your visit with a list of your symptoms and medications. Many
patients find that keeping a symptom diary helps them talk to their doctors better.
Ask questions and answer questions fully. Be prepared so you can make the most of
your meeting with your healthcare provider, you will likely have limited time.
Write down your thoughts before you go. List all symptoms you experience on a regular
basis. Describe the symptom clearly but try to keep it as brief as possible. Note when
the symptom began, how frequently it occurs, and how it affects your life. Place
special attention to describing:
Interview Questions
Schedule a no-cost interview with each provider who interests you. Make it clear to
the receptionist or nurse scheduling appointments that this is not a medical exam, just
an interview. At your interview, provide a short list of your medical problems or
symptoms. Be brief. Keep the interview to 10 or 15 minutes.
Write down all of your questions in order of importance. Don't depend on your memory.
Interviewing a doctor can be stressful and you're likely to forget something if you
haven't written it down. By asking the most important questions first, you ensure
those questions will be answered even if the appointment has to be cut short due to
time constraints.
Suggested Questions:
- How often do you treat patients with my type of illness?
- What are your special qualifications to treat my illness?
- Have you participated in any special training for pain management techniques?
- How will you manage my pain condition in terms of medications & alternative
therapies?
- What types of medications do you usually prescribe?
- What types of non-medication therapies do you use?
- Where do you refer patients who need additional treatment?
- Is your clinic listed with any professional societies?
- Are you, or is someone in the clinic, available 24 hours a day if I need help?
- What should I expect from treatment with you and/or your team?
- What do you expect from me?
- Will your services be covered by my insurance?
- Do you accept what Medicare pays?
- How much do your services cost?
- How can I make arrangements with you to pay for these services?
While many doctors will accept what medicare pays for their services, there are many who
don't. Be sure to know this in advance, as you may need to come up with more money
for your visit.
After the interview, jot down your impressions. Did this person believe in Fibromyalgia
or Chronic Fatigue Syndrome? Were your questions answered? Is this a person you feel
comfortable with? Did this person listen intently to you, or were they distracted?
Trust your gut instinct. Finding the right person to treat your FM and/or CFS/ME
is important. Don't give up. Even if you've had bad experiences in the past, things
are improving in FM and CFS/ME treatment. There's a medical professional out there who
is just right for you.
Pain
The more you share about the pain you feel, the better. Sometimes it's hard to find the
right words to say exactly how you hurt. Below are a few ways to describe the pain
of fibromyalgia. Be sure to describe WHERE you feel pain.
- Tender
- Stiff
- Dull
- Burning
- Throbbing
- Sharp
- Deep Pain
- Achy
- Bruised
- Flu-Like Symptoms
Pain often affects the way you live every day. Talk with your healthcare provider about
how you spend each day. Does the pain keep you from doing any of the things you usually do?
Be detailed.
It may help to write this information down. Then, you can be sure you don't
leave anything out. Filling out the log each day will help you describe your pain. It
will also help you identify pain triggers. Share it with your health care provider at your
next visit. It will help them to give you the help you need. Try to focus on a few
questions each day, such as:
- Are you fatigued?
- Does the pain affect your sleep?
- How many hours of sleep are you regularly getting?
- Do you have a normal appetite?
- Are you active?
- What is your daily routine?
Avoid the temptation to say your pain level is 50 on a scale of 0 to
10. Although your intention is to have the severity of your pain taken seriously, it
will have the exact opposite effect. If you exaggerate your pain level, your doctor
will assume you're exaggerating everything else as well. We have come up with our
version of the Pain Scale. Feel free to print it out and use it for
future reference.
Education
The more you know about Fibromyalgia (FM) and/or Chronic Fatigue Syndrome (CFS/ME), the
better prepared you'll be when trying to find a doctor. It's a difficult process, and you
may need to educate a few health-care professionals along the way. Be sure you know the
list of symptoms and become familiar with the various ways FM and CFS/ME are treated.
The crux of the problem is that no medical specialty has "claimed" FM and CFS/ME,
so finding a knowledgeable doctor isn't as easy as with most illnesses. FM and CFS/ME
are not well understood, and many health-care providers have a hard time recognizing
them. Some don't even believe these are actual medical conditions.
All this means that the burden of finding someone qualified to treat you falls squarely
on your shoulders. If you already have a good relationship with a
health care provider, you should urge them to develop an understanding of FM and CFS/ME.
Educate your doctor by providing them with literature about these illnesses.
Support
Support groups may be able to guide you when looking for a health care provider in
your area. You can see a list of your local FM/CFS/ME support groups by
CLICKING HERE.
Call local hospitals. Ask about support groups for Fibromyalgia and/or Chronic Fatigue.
People in those groups will know which health care providers treat Fibromyalgia and/or
Chronic Fatigue.
Keep in mind that many people choose health care providers according to "personality"
and opinions differ among individuals. Most people are not qualified to characterize a
doctor as competent or incompetent. However, compassion and understanding, good
"bedside manner" and an open mind are qualities that count in a health care
provider, especially when treating chronic illnesses like FM and CFS/ME.
Remember
Doctors are people too. They're all fallible, and no one doctor can possibly keep up
with all the new medical information coming out. Doctors, like the rest of us,
have personal opinions and attitudes. They can't be totally unbiased or free
of pre-judgments. If your doctor can't deal with your real medical problems, seek
help elsewhere!
Doctor Types
Traditionally, Fibromyalgia (FM) fell under the scope of rheumatologists. But
today, primary care doctors, podiatrists, osteopaths, psychiatrists, neurologists, nurse
practitioners, and pain specialists are overseeing long-term FM and CFS/ME treatment.
Many rheumatologists have big, demanding patient loads. Some prefer to treat only
autoimmune disorders like lupus and rheumatoid arthritis. Ideally, you would like to
have one provider take care of you. If you can't get that, the next best option is a
treatment team - a provider who manages your long-term FM and/or CFS/ME treatment,
plus therapists who address special problems.
For Long-term FM and/or CFS/ME treatment: Talk to doctors of osteopathy (DO), primary
care physicians, nurse practitioners. If you're seeing a podiatrist, psychiatrist,
or neurologist, talk to them about your overall condition.
For short-term therapy: You will likely need physical, occupational, speech, and
cognitive therapists who can treat certain aspects of your illness. You won't see
them long-term, just for awhile to get exercises you can do on your own.
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