Finding a doctor willing to consider a fibromyalgia diagnosis can be a long and difficult process. On average it takes about five years to get diagnosed partly because some doctors don’t believe in fibromyalgia and others aren’t willing to treat a condition with no cure.
My personal experience fits into this narrative as it took me two years and seven doctors to get a diagnosis. I started having strange symptoms shortly after the birth of my son. I developed a rash, I was tired all the time, my neck felt stiff, my body ached all over, and I started having trouble remembering things. Unfortunately it was easy for doctors to dismiss my symptoms as something that comes with a new baby. Even as my baby grew older I was continually told that I was just tired. I tried to explain the difference between tiredness from sleep deprivation and being fatigued no matter how much sleep I got, but no one would listen. By the time I made it to the seventh doctor I was more than a little discouraged.
The seventh doctor I saw was an Internist recommended to me by a friend who found the doctor to be a good listener. When the doctor walked in and said she knew something was wrong with me, I was in tears; finally, someone who saw me. Based on my symptoms she believed I had Lyme disease, fibromyalgia, or possibly both. I was tested for Lyme disease, thyroid problems, and other autoimmune diseases to see if they were the cause of my symptoms. To my surprise the Lyme disease test was the only one that came back positive. However, my doctor also believed that I had fibromyalgia induced by Lyme disease due to the years between when the rash appeared and when I was able to start treatment for Lyme. For a long time I wasn’t sure if this was the correct diagnosis, but some studies have shown that Lyme disease can trigger fibromyaligia. I will always be grateful for that doctor who was simply willing listen. It isn’t easy to find a doctor that is right for you, but here are six things to look for in a fibromyalgia doctor:
- They are willing to say “I don’t know”
Fibromyalgia can be complicated to diagnose and troublesome to treat. It presents differently in each person and it’s difficult to tell whether symptoms are attributed to fibromyalgia or something else. Oftentimes when physicians are presented with a complicated disease, it’s easy for them to believe the problem is in the patient’s head. You need a doctor who is willing to admit they don’t know everything and can say “I don’t know, but let me refer you to someone who might.”
- They keep up with the research
Fibromyalgia is a relatively new diagnosis and as a result new research is coming out all the time. For example, a diagnosis of fibromyalgia previously involved tender points or 18 areas spread around the body that are painful when pressed. In order to receive a diagnosis patients had to have 11 of 18 tender points. However, fibromyalgia is now diagnosed based on the patient’s symptoms and not just the number and placement of tender points.
You need a doctor that is aware of these research developments in order to get an accurate diagnosis and get the best care possible. Even if your doctor hasn’t had a chance to study the most recent research you’ve found, they should be willing to look into it if you bring it to their attention. Don’t accept a doctor who runs in, talks to you (or over you) for three minutes, and then runs out without giving you a chance to have a discussion about the most recent research.
- They are non-judgmental
You should be comfortable telling the truth about your health to your doctor without being judged for it. Your doctor needs to know your entire medical history, so you need to be comfortable with him or her. You shouldn’t be afraid of being accused of being depressed or lazy because of your symptoms or behaviors. Additionally, a common concern that fibromyalgia patients have is discussing weight with their doctors. Your doctor should be able to discuss weight and how it’s affecting your health without shaming. If your doctor regularly shames you for your weight and doesn’t offer helpful suggestions on how to deal with it, find a new one.
- Willing to discuss treatment for pain
Pain is one of the hallmarks of fibromyalgia, and yet many doctors are not willing to discuss solutions for it. There are a number of different medications approved for fibromyalgia, but they do not help every patient. When I was first diagnosed I tried several different medications, but none of them worked. I also tried alternative treatments, as well as making lifestyle changes in order to better manage my pain. While these did make me feel slightly better, I still couldn’t sleep at night because my pain levels were so high. As a last resort I approached my doctor and asked if there was any pain medications that might help me. I was lucky enough to have a doctor that knew all the effort I had put into minimizing my pain and was therefore willing to discuss the next best option. There was no shaming involved, only a willingness to keep trying different methods of pain relief. Your doctor should not dismiss your pain. They need to be willing to experiment with possible solutions, or be willing to refer you to a pain specialist that could better fit that role.
- Ease of communication
Ease of communication is one of the most important requirements for a doctor. How hard is it to get an appointment? Does it take days of back and forth calls and being put on hold before you can get anywhere? If you have a problem, can you easily communicate with the nurse or do they ignore your phone calls? Unfortunately my experience in this area has not been positive. I have a great doctor who is impossible to get ahold of because of her unhelpful staff. I have found myself looking for a new doctor just because it’s so difficult to get any assistance.
Ideally your doctor needs to have a responsive office staff that facilitates communication. Some offices even allow for special accommodations for fibromyalgia patients, like communicating by text.
- They aren’t threatened by patient knowledge
Because doctors generally focus on multiple conditions it isn’t unusual for a patient to know more about their disease than their doctor. Unfortunately some doctors find educated patients threatening and consider them to be “difficult.” You need to find a doctor who is willing to keep up a continuing dialogue about treatment. You should feel comfortable bringing up new research and asking questions about how it can affect you.
Finding all these characteristics in a doctor might be difficult and will take some time. The best advice I was given by a doctor was to keep fighting for my right for quality treatment. Every person who lives with a chronic condition deserves to be given respect. Don’t give up until you find a doctor that is willing to work with you to make decisions about your health.