Fibromyalgia
The FAQs and More
Fibromyalgia: The Doctors
Warning!
Watch out for quack doctors, therapists, and drugs/pills/procedures promising a cure. With chronic illnesses such as fibromyalgia, you will see many outrageous claims that feed on the desperate. They may not do anything at all if you are lucky, but sometimes it may make your condition worse or give you new problems. Always consult with whomever you have chosen to lead in your treatment management before you try something which may conflict with what you are doing.
An example could be something that may seem as simple as taking ginseng and St. John's Wort tea to cope with pain and depression that might be otherwise effective, unless you are taking a drug such as an SSRIs (Lexapro, Prozac, Zoloft…) or SNRIs (Pristiq, Cymbalta, Savella) and certain drug categories for depression, IBS, or pain. Combining these drugs with ginseng and St. John's Wort can cause serotonin syndrome which can be quickly fatal or cause lasting harm.
If you are feeling constant pain all over your body and having that inner sensing that something is not right inside, you need to see a doctor to check it out. While it may seem a time saving factor to go straight to a specialist, it does not quite work that way. Most specialists will not see you unless given a referral or a definite diagnosis made by a PC (primary care) doctor. Even if you suspect it is fibromyalgia, it could be several other things which can mimic this syndrome.
In the beginning, consult with your PC doctor who will usually start off with a series of initial tests, blood work and check up, then make sure you are up to date on your inoculations (that is if he/she is any good at what they do). If they cannot figure it out from the initial visit and the pain persists, a good doctor will either pursue it further or refer you to a specialist. A doctor you will want to avoid is one who automatically assumes it is all in your head.
Your first line of defense should always be the doctor who is most familiar with you and your medical history. This is a doctor with whom you should have an ongoing running dialogue that you see at least once a year for a checkup and you feel comfortable seeing during the year when an illness comes up (preferably one who will see you the same day whenever possible).
If you do not have one which fits this bill, shop around for a PC doctor. Consult with your insurance company to get a list of doctors within your network and then investigate them by doing an online search (type in the doctor's name and city of business and you should run into several web sites where patients rate doctors) and do a search with the BBB and/or any local business/medical boards.
Next, you should find other patients who use that doctor and get their opinions. Ask questions of patients:
- Does the doctor take time to explain any test results?
- Does the doctor try and schedule you within a reasonable time in an emergency?
- How long are you usually waiting in the waiting room or in a cubicle until you are seen?
- What is their bedside manner like?
- Does the doctor encourage or get annoyed at your questions?
- Does the doctor have a curiosity to dig deeper when he/she does not know the answer?
Interview your doctor because face it, he or she will be working for you. This is a relationship of trust, so ask the questions you need to know in order to trust and feel comfortable with the person who will be looking after you. Feel free to ask him/her these questions and others you might think are necessary to you:
- Where did the doctor go to medical school?
- Is the doctor board certified?
- Does the doctor have certain thinking about the nature of disease?
- Does the doctor continue going to school or find other ways to keep up-to-date?
- With which hospital is the doctor affiliated?
- What type of insurance is accepted and how are payments handled?
One of the questions, "Does the doctor have certain thinking about the nature of disease" is actually to screen out potential quacks and others who are convinced they are god. Some doctors may also have a bias with ties to certain pharmaceutical companies which pay bonuses for writing up certain prescriptions or may be selling something specific like a book. You may get a doctor convinced all disease is caused by lack of sleep and will have blinders on when investigating other causes of illness suggesting you get more sleep or a doctor convinced that people who get sick a lot are depressed may write off all future illnesses as all in your head. If you have a chronic illness and the doctor tends to get stuck on one way of thinking, he/she may overlook other ways to help you.
Don't be afraid of offending a doctor that does not fit the bill. Chances are if they are not meeting up to your needs, they are probably burned out in their job and are doing you no service other than taking your money. If you have, or suspect you have fibromyalgia, then you are going to be seeing a lot of him/her, in order to diagnose and manage it.
First understand fibromyalgia is diagnosed by ruling just about everything else out. To get an accurate diagnosis, you will go through many, many tests. This process can take months or even years. You will likely get frustrated and lose patience during this process; that is why it is important you have a PC doctor that you feel is competent and on the same page as you. Your PC doctor may at certain points refer you to other specialists whom will be running tests to rule out more specific things. You may be given a series of MRIs, CTs, EEGs, EKGs, cardiac stress tests, biopsies, or whatever is needed depending on your specific complaints.
When everything else has been ruled out and you have persistent pain all over your body for longer than 3 months, you will likely be diagnosed with fibromyalgia or one of the similar symptomatic conditions (Lyme disease, multiple chemical sensitivity, myofascial pain syndrome, chronic fatigue syndrome, major depression).
All too often a patient will see a doctor who either doesn't recognize he/she has a problem or who doesn't believe the problem exists. While it is crucial that organic disease be ruled out, which does not mean the following thought should be: "As all tests are negative, there is nothing wrong with you." A doctor who may suggest there is nothing wrong with you and you are a hypochondriac (you know your body better than anyone, if you are really feeling pain all over along with other symptoms and a doctor says that, RUN!!). You don't have to take a diagnosis on face value, feel free to get a second or third opinion.
If you feel comfortable with the diagnosis, you will need to start with an effective plan to treat your symptoms. Please note there is no cure, only daily management strategies to cope with fibromyalgia; this includes medication, exercise, diet, counseling, and sometimes therapy. Just because you have it does not mean this is the end of enjoying life, although you can let it get the best of you which will only make it worse. You must also understand that even if you are doing everything you are supposed to do and have a positive attitude, there will be some days worse than others.
Your PC may either take charge of helping you come up with a plan to manage your fibromyalgia or refer this job to a rheumatologist or neurologist that specializes in this syndrome. Most PC doctors can cope with milder cases, but sometimes after trying numerous drugs and therapy he/she might be stumped or cannot think of something else to do, or is not familiar enough with this syndrome and in those cases will refer you to a specialist.
If you feel more comfortable with a specialist, keep in mind one is only a specialist in his/her field after regular educational credentials to become a medical doctor, they must also endure an additional three years in a specific specialty accredited residency program and pass a board test. Many specialists start out as internists ("A physician who specializes in the diagnosis and medical treatment of adults. This specialty, called internal medicine, is dedicated to adult medicine") and then find a niche such as an internist in neurology or an internist in gastroenterology.
If your PC cannot handle or refer you to a specialist knowledgeable about fibromyalgia you can find a doctor through fibromyalgia support groups by asking members who live nearby who they are seeing and go through the same round of questions and investigation before you decide on one who is best suited to your needs.
A rheumatologist is a medical specialist who can diagnose and treat arthritis and diseases of the joints, muscles, and bones including fibromyalgia, rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, bursitis, and tendinitis.
A neurologist is also is a medical specialist who can diagnose and treat nervous system disorders, headaches, back pain, muscle disorders, fibromyalgia, carpal tunnel syndrome, and reflex sympathetic dystrophy.
Your PC doctor, rheumatologist, or neurologist should serve as the coordinator with the team of doctors who will be treating you. In addition to these three types of doctors, one of whom will be the team leader in your case, you will probably see other doctors, specialists or therapists including: Pain specialists, orthopedists, opthomologist, psychologists, physiatrists, gastroenterologist, urologist or gynecologist, naturopaths, chiropractors, osteopaths, and acupuncturists. One or more specialists may be required depending on your specific symptoms. Keep in mind, just because you have fibromyalgia, does not mean whatever new shows up is necessarily "just the fibro". People can have primary (fibromyalgia is the only syndrome going on) or secondary fibromyalgia (something else is going on such as rhumatoid arthritis or lupus). If in doubt, investigate it.