This is Part Two of my interview with Karen Lee Richards about RA and Fibromyalgia. Part One of the interview covers Fibromyalgia symptoms, treatment and history. This second part deals with RA and Fibromyalgia similarities and differences, coping tools and the future of fibromyalgia treatment.
Today, May 12, 2011 is National Fibromyalgia Awareness Day. As many of our users to live with both RA and fibromyalgia, Karen Lee Richards - the Community Leader of our Chronic Pain site - and I interviewed each other about RA and fibro. You can read Karen’s interview with me on Chronic Pain.
People who are trying to get a diagnosis may experience doctors flipping back and forth between an RA and fibromyalgia diagnosis. Why do you think that is?
Both illnesses can be difficult to diagnose and share a number of common symptoms such as joint pain, fatigue, and flu-like symptoms. Since blood tests and x-rays may show up as normal in the early stages of RA, it can be hard to pinpoint whether RA or FM is responsible for the symptoms.
There also seems to be an increasing number of people who are diagnosed with both RA and fibromyalgia - are the two are related?
It’s not unusual for FM to occur with another disorder like RA, osteoarthritis, lupus, multiple sclerosis, etc. Researchers think that some people have a genetic predisposition to FM that may be triggered whenever they develop another illness. It’s also possible that there may be an autoimmune connection between RA and FM, however, thus far that has not been proven.
What are some of the characteristics of fibromyalgia pain that may distinguish it from RA pain?
Sometimes they can be indistinguishable from one another or what may begin as RA pain can turn into FM pain. Let me try to explain what I mean. FM causes our bodies to be overly sensitive. When the average person experiences a pain, their body works to heal itself and relieve the pain. When someone with FM experiences a pain, their body increases its intensity and begins to spread it to other parts of the body. For instance, when the average person stubs a toe, they have pain for a few minutes then it begins to subside. When I stub my toe, I have the initial pain in my toe; then an hour later I notice that my foot is hurting; in a few more hours, my entire leg and hip will be painful. This means that even though you may be able to get the RA pain under control, you may still have some FM pain left to deal with.
I’ve had RA for over 40 years and developed fibromyalgia in 2004. I discovered that many of my RA coping tools either didn’t work or made fibro worse. For instance, being still can alleviate RA pain, but can make fibromyalgia pain worse, so now I make sure I don’t stay in any position for more than 20-30 min. Please share some of your favorite coping tools.
I’d like to share the top five coping tips that have helped me the most:
As you mentioned, moving around as frequently as possible is a very important tool. My pets get frustrated because they can’t sit in my lap for very long before I’m popping up and walking around a bit so I don’t get stiff and sore.
Don’t wait until you can’t stand the pain anymore before taking your medication. Once the FM pain cycle gets started, it can be hard to get it under control.
Learn to “listen” to your body. Our culture tends to admire people who “push through the pain” and keep working no matter how tired they are, but those are the worst things you can do if you have FM. If your body is screaming that it needs to rest, pay attention to it.
Reduce stress. Stress can increase your pain, so try to be aware of things in your life that cause you stress and figure out what you can do to minimize those stressors.
When you have a good day, don’t overdo. Doing too much will most likely send you right back to where you were - exhausted and in greater pain. Do a little more on good days but don’t go crazy.
I remember seeing a commercial for Lyrica for fibromyalgia for the first time a couple of years ago and having this overwhelming feeling of the condition finally being validated. Has there been a significant shift in diagnosis and treatment in recent years?
Absolutely Getting that first FDA approval for a medication to treat fibromyalgia signaled a major turning point for the FM community. As you sensed, it validated the illness in the minds of both the public and the medical community. After all, the FDA wouldn’t approve a medication for a fake illness. It gave family doctors the confidence to diagnose and treat their FM patients. In pre-Lyrica days, many doctors didn’t want to take or treat FM patients because they didn’t know what to do for them. Beginning with Lyrica and now with the addition of Cymbalta and Savella, doctors have treatment options to offer their patients.
What does the future hold for people living with fibromyalgia?
I think the future for people with fibromyalgia is very bright and hopeful.
I was diagnosed with FM 15 years ago, after seven years of suffering and not knowing what was wrong with me. At that time, no one (including me) had ever heard of it and all doctors could tell me was that they didn’t know what caused it, there was no cure, and I’d just have to learn to live with it.
The advances I’ve seen in FM awareness, research, and treatment options in those 15 years are nothing short of phenomenal. As research into the causes and effects of FM continues to increase, it will lead to more effective treatments, possible preventative measures and perhaps even a cure.
Thank key you, Karen, for your insight and information!
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Lene is the author of the award-winning blog The Seated View.