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"How do I find a good doctor?" is one of the most often asked questions that we hear from people with Fibromyalgia. The answer to this question, however, is not a simple one.
Fibromyalgia is generally diagnosed by a rheumatologist who will tell you that this is a condition that involves self management, and that your GP would be the most appropriate person to take over your care. So along you go to your local GP, thrilled that you finally have a diagnosis and ready to do whatever it takes to begin on the road to recovery. Now if you are very lucky this will all go smoothly. However, it is at this point that many people have the greatest difficulty.
Before I had this illness I was like a lot of people. That is, I saw a doctor maybe once a year at the most if I needed time off work with the flu or maybe for an occasional pap smear. I went to the local Health Center or somewhere close to work. I didn’t have my own GP who knew me and understood my previous level of fitness, and my reluctance to take to my bed unless I had no other choice. Therefore I, and I’m sure a lot of you as well, had to start from scratch.
I can only talk about my own experiences, but I’m sure they’re not unique. I would announce to the GP that I had Fibromyalgia, and that I had come to them to find out how best to manage it. Some said things like “What makes you think you’ve got that?” or, “Who told you that?” usually with a smirk or in a patronising tone of voice. When I named the rheumatologist there was then an outpouring of admiration for her and agreement that she was probably right. Others just ignored my announcement that I had Fibromyalgia and decided they would rather talk about areas that they had a better chance of actually fixing, like my asthma or high blood pressure. Then again, others couldn’t get rid of me fast enough. This wasn’t going at all like I had expected.
The problem is this – at the moment there is not a cure for Fibromyalgia or Chronic Fatigue Syndrome or whatever else it may be that we have. I don’t want to depress anyone who is looking for a way to get well, there are things you can do to feel better, but a cure has not yet been developed; we don’t even know why or how we get this illness! You will hear of or read theories about our illness and how to cure it but, although some things may work for some people, these treatments have not been proven to work for everyone. So how can we expect our local GP to help us?
Some people might think if a GP can’t fix us, and as we are often told the most important element in our health care is self management, it’s not that important to see a GP. Despite that, I would say that it is important to have an ongoing relationship with a GP precisely because we don’t have a cure yet.
We need support dealing with a chronic illness. We also need to be aware that we may have or could develop other health problems, and that not every new symptom is ‘just Fibromyalgia’ and should be checked out and perhaps treated separately.
Also there are a variety of treatments that can ease a lot of the symptoms of Fibromyalgia - for example, the pain of gastric reflux can be relieved with medication - and so improve your general wellbeing. It may take a fair bit of trial and error before you arrive at a health care program that suits you, so it is good to have extra support and advice through this process. It is also helpful to have a comprehensive record of various treatments that have been tried and their effectiveness.
Ideally our relationship with our GP should be one based on mutual respect. This is one of the reasons why information gathering is so important. We can’t expect our doctors to have all the answers, and nor should we. But if you go along to your doctor having read as much material on this condition as possible, then the chances are you will be as knowledgable about Fibromyalgia as your doctor, or perhaps even know more about it than they do. You should then be able to discuss and possibly question your current care or new areas of research rather than just being told what to do.
It is also important that your doctor has empathy for you - which doesn’t mean that they feel sorry for you, but just that they display understanding and, most importantly, believe what you say.
You may have a relationship with a doctor that works very well for you but if you don’t what do you do? You shop for one just as you would for any other service. If your mechanic isn’t satisfactory you don’t keep going back; if your hairdresser is rude to you and won’t do what you ask, you look for someone else.
So where do you start? You can ask other people in your support group, although keep in mind that the person I really like might irritate you terribly. The ACT ME-CFS Society, like most, also has a list of doctors that their members have found useful, and they will usually give you a list of the doctors in your area over the phone. Just keep in mind that though these doctors that their members have found satisfactory, they are not necessarily experts. You could also just work your way through the phone book.
When you have your list of possible GPs then think about what it is that you want from them. Is it expertise in the area, is it understanding, or is it something else? Then write a list of questions and start interviewing. Be honest, tell them what you are doing and why. If the doctor is not comfortable with this then it’s a pretty fair indication that they are not the right one.
Some questions you could ask are:
The list is neverending and of course needs to be tailored to your own special needs.
Just keep looking until you find the doctor that seems right for you because chances are you are going to be spending a lot of time together.
Just a final thought – many doctors are good doctors, that is capable or knowledgable, but finding one that you are happy with means that you will feel less stress and therefore have more positive outcomes. Choosing a doctor is one of the most important choices you can make – it is about helping yourself and taking control. Good luck!
by Janine Jeffreys
March 1999
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last revised 13 July 2002