One of the most important decisions you can make related to Fibromyalgia is your doctor. Most people I know were directed by their normal doctors to Rhuemotologists or pain center doctors. I have seen both. I also saw a neurologist when I was still seeking a diagnosis and had some strange symptoms (especially a tremor) that they thought may be due to a neurological problem.
The neurologist was less than helpful. I was in a flare at the time (so bad that I had pulled my news to my chest in the car and cried all the way to his office). The tremor was worse when I was tired or stressed out and it didn't show up until almost the end of our appointment. It was the only thing he was interested in - he ignored all my other complaints. His diagnosis and expert advice? I was getting older and "it all goes downhill after the age of 18." I was 28 years old at the time.
Then I saw a Rhuematologist that did a tenderpoint exam and diagnosed me with one of the worst cases of Fibromyalgia he had ever seen. I was relieved to have an answer and did a ton of research when I got home. He was a very nice man - and I believe he tried to help. He put me on medication. The problem was he ignored my medical chart and gave me medicines that interacted with other prescriptions I was taking -- and also ignored allergies listed on my chart. I had a couple very bad reactions before I realized what was happening and asked my primary care doctor to take over management of the symptoms of Fibromyalgia.
The pain management doctor told me Fibromyalgia pain was all "in my head" and due to abuse. When I asked what he meant, he told me most Fibromyalgia patients were victims of child or sexual abuse whether they would admit it or not - and their symptoms were psychological and not physical. Seriously?
It may take some trial and error to find a doctor who listens and you can trust. It's very important though. Some suggestions I have for making the most out of an appointment are:
- Make a list of any questions or concerns you have. Leave space to jot down notes on the answers given as well. When you're in the office, it can be hard to remember everything -- and it may take another 6 months or a year before you're seen again - so you don't want to forget anything.
- Make sure you share any supplements you're trying with the doctor. Some supplements interact with medications making them not work - or even have a bad reaction.
- Note any helpful things you've tried. It may lead the doctor to another medication or activity that could be even more helpful.
- If you have any new negative side effects or symptoms (even if you think it's unrelated to Fibromyalgia) share them.
- If the doctor is prescribing a new medication, make a point of asking if this will interact with any medications you are already taking - and any side effects or allergic reactions you should be on the lookout for. Just asking will probably cause them to take a second look at your chart and could avoid any mistakes.
- Look up those new medications for yourself - and/or ask the pharmacist questions.
Also - if your doctor ignores you, makes mistakes with medications, never has time for questions, etc., find a new doctor. You need someone you can trust fighting beside you.
Take care of yourselves - you're worth it.
