I read your biography at the American Pain Foundation website, so I know that your live with Ehlers-Danlos Syndrome (EDS). EDS can include symptoms of fibromyalgia, which is a condition I have as well. I am wondering how you have been able to successfully advocate for yourself in terms of getting better pain treatment when you live with fibromyalgia.
My experience has been that fibromyalgia is a difficult condition to have when it comes to actually getting some pain relief.
Maggie: Yes, it is a challenge. I think the challenges are with communication and knowing what your options are. Part of that is examining any preconceived notions you have, like: 'This is what I am going to accept.' 'This is what the doctor is going to do for me.' and 'This is what I want.'
There is a delicate balance here: you know what you want, you know what you need and then you need to navigate the healthcare system. Whether it's your HMO or you insurance company, maybe you need to get them to "sign off" on certain things. In a lot of states there is a "fail first" protocol where you have to do it "their way" before they will consider any specialized treatment.
The first step is becoming very clear with yourself about what is going on and outlining your objectives. The next step is documenting your status quo. A good place to start is documenting what your pain level is using a pain notebook. I volunteer with the American Pain Foundation (Maggie is on their Board of Directors), so I'm going to recommend the APF's pain notebook. It has downloadable PDF pages that will help you build a notebook, something that you can share with your healthcare provider that will show the pattern of your pain. Then your nurse will be able to summarize it or highlight things for the doctor to look at.
Also, with pain care in general, some people are very narrowly focused on 'I need to take a pill to do this.' or 'I need to have physical therapy to do this.' or 'I need to lose weight to get rid of my pain.' There are a lot of people who, when they first get into a chronic pain situation, are very clear in their minds and have this image of 'This is what pain-free is going to be and what is it going to mean and how I am going to get there.'
Usually that is not the case.
So being open to the idea that there are six or seven different approaches to pain management, whether it is medications, injections, surgery, complimentary or alternative medicine, implantable devices and/or physical therapy. It is most likely going to be a combination of approaches.
It is more about creating a recipe of what works for you.
So you take a little bit from this approach and a little bit from that approach and then you mix it together. So maybe to start on the road to pain management you'll need prescription medications and physical therapy. You'll need the prescription medications to get your pain down to a certain level so that you can actually show up and participate in physical therapy. Maybe with an increase in physical therapy, the benefits from medications are diminished, so you add in something else like meditation, acupuncture or massage.
As you go along, you learn and get better at managing your pain. So if you have an injury or setback you'll add something back in that worked in the past. Patience is a big part of it, as is tracking your symptoms so you can present a full picture of what is going on with you and have documented proof. It's also about having really good communication skills: not just being able to tell your story, but being able to listen and participate respectfully in conversations.
And finally, don't be shy about letting a healthcare provider go if they aren't giving you the support you need and working with you on your situation. You are a consumer and it is O.K. to go find somebody else.
Selena: That's a good point. I know in my own personal experience it has taken going to several different doctors before finding a doctor that was really willing to look at all the pain treatment options and offer me something from everything available. I found that there were some doctors who were only willing to go so far with pain treatment. Once I tried everything they were willing to offer me, I had to go see someone different because there wasn't anything else they were going to offer me.
I am wondering if, through your advocacy work, this a story that you hear a lot and is this something that you are trying to change?
Maggie: Yes, with everything that I am involved with. Using the In the Face of Pain website is helping me do this; it is one of many tools that I use. Plus there are links on the In the Face of Pain website to medical organizations that are another tool you can use to help find pain management healthcare providers.
I think finding a healthcare provider is just like dating. First you meet, then you decide 'Well, do I want to see them again?' and 'What am I getting out of this relationship?' You might decided to break up with that doctor and start the whole "dating" part over again. And it might take a second, or third, or fourth, or fifteenth round of "dating." It can be very frustrating and it wears people down.
Contacting support organization for your particular condition, or similar conditions, can help. So for example, for people with EDS, I always advise them to consider tapping into support organizations for fibromyalgia, arthritis or heart-related conditions because those are all the symptoms and systems that are affected.
When you have exhausted the list at one organization, take a look at somebody else's list for ideas about who might be able to help you. Sometimes finding good pain care means thinking outside of the box.
To be continued...