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The Sweet Spot: I have Fibromyalgia and I feel wonderful

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I had just finished seeing my last fibromyalgia patient of the morning, and I was getting chicken salad out of my lunch bag and had time to take a deep breath and check in with myself. Ahh, my body felt great–my muscles moved easily and I didn’t feel pain anywhere. I had plenty of energy, my mind was clear, and looked forward to the afternoon and the weekend.

I had hit the “sweet spot,” the spot where my system was in balance. How did I, someone with fibromyalgia, achieve this balance? I try to practice what I preach: in order to have the best chance of recovery from fibromyalgia symptoms I find that I and my patients need to:

1. eat foods that help you feel well–we are what we eat, it is that simple.

2. get consistent aerobic exercise–we all need at least 20 minutes of aerobic exercise 4 times a week to feel well. Put comfortable shoes on and get moving. You will build new mitochondria over time which will give you more energy and help you feel better.

3. clear well on the guaifenesin protocol–this treatment has proved so successful for me and many of my patients.

Do I feel wonderful all day every day? No, but I feel a heck of a lot better now than I felt 7 years ago when I was first diagnosed. Do your best to follow the 3 guidelines to give yourself the best chance to hit your sweet spot. This is my wish for you.

 

The Making of “Fibromyalgia: Getting Our Lives Back,” Behind the Scenes Part 1: A Surprise for the Doctor

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IMG_1258Even though I had a vision in my head about what I wanted the fibromyalgia film be I had no idea how to get there. How could I help my patients communicate what they had been though? During a patient appointment I ask pointed direct questions (what is the severity of your pain? How is your energy? Has your fibrofog eased at all?) These questions are designed to give me the information needed to quickly and accurately assess how the patient is doing before I exam them and then make an assessment and plan. But making a good movie is different than structuring a good office visit. Luckily filmmaker Tylor Norwood had it all figured out.

“Ask your patients to tell you their story” Tylor said. “Sit in a chair across from them and ask them and listen. I will film it all.” It was that simple but that profound. This was not a situation where the doctor controlled the visit, this was the patient’s chance to describe what was important in their healing journey: to reveal the struggles to get diagnosed, the disappointment when medications and treatments failed to work, and the joy when the pain and fatigue started to ease on the guaifenesin protocol. I had known most of these patients for over a year and yet I learned things about their journeys that I had never known–important and profound things. All I had to do was listen.

My thoughts on the JAMA article “Fibromyalgia: A Clinical Review” by Daniel Clauw MD Part 2

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I love Dr. Clauw’s article. It is a thoughtful and comprehensive review of fibromyalgia. However, I must take issue with the following:

1. Dr. Clauw states that “rarely” it may be “ill advised” to “provide a diagnosis (of fibromyalgia) for a child or adolescent who might use a fibromyalgia diagnosis as a reason to restrict activities.” WHAT? Firstly, I think it is never OK to withhold a diagnosis of fibromyalgia from anyone. Secondly, it is my job as a fibromyalgia consultant to help fibromyalgia patients of ALL AGES understand the importance of consistent aerobic exercise in reducing symptoms, and I would never let a patient’s dislike of exercise keep me from being honest about a diagnosis. I teach all patients how to begin an exercise program so they can minimize pain and maximize the benefits of exercise (see blog on the “exercise envelope” 8/5/14). Dr. Clauw is not the only specialist who feels this way, and sadly many children and adolescents are denied early treatment because of it.

2. Dr. Clauw states; “Usually, the physical exam is unremarkable in patients with fibromyalgia.” Not in my experience. I have examined hundreds of fibromyalgia patients and they all have a distinct pattern of muscle spasm on exam. If a massage therapist ever said “you have the tightest shoulder muscles ever– your muscles feel like rocks,” then you know what I mean. Fibromyalgia expert Dr. R. Paul St. Amand taught me how to carefully examine the muscles, tendons and ligaments of patients to check for muscle spasm and nodules. I do not expect all doctors to travel to see Dr. St. Amand to learn how to more accurately diagnose fibromyalgia (although that would be wonderful), it it is clear to me that fibromyalgia patients have a “remarkable” exam. I am amazed by how many of my new patients tell me that most of their doctors do not even touch them.

3. I am worried that Dr. Clauw’s recommendations for treating “Ms P” will not be successful. I agree that she should limit her to of cyclobenzaprine to 5-10mg at bedtime (although we don’t know if she is already doing this). Dr. Clauw recommends she take her dose of pregabalin at bedtime, which she states she “usually” already does. Next he recommends she add a serotonin norepinephrine reuptake inhibitor. She is already on TEN prescription medications! I would love to see Dr. Clauw discuss a plan to perhaps start a new medication while decreasing and stopping others. Many of my new patients are on a dozen drugs–yes they can reduce symptoms (usually only temporarily), but they have side effects and they can interact with each other! I totally agree with Dr. Clauw that helping “Ms P” understand how to use non-pharmacological therapies to help treat her fibromyalgia is vitally important.

4. One more issue in closing: Dr. Clauw states “effective treatment for fibromyalgia is now possible.” Yes, I believe that with more fibromyalgia research and more excellent articles on fibromyalgia diagnosis and treatment practitioners will better understand fibromyalgia and its effective treatments, but I think it is important to recognize those practitioners who have ALREADY been successfully treating fibromyalgia for years! Many thanks to them–including Dr. Daniel Clauw.

You can access the article here: http://jama.jamanetwork.com/article.aspx?articleid=1860480

 

Exercise in Fibromyalgia: You know you should, but how? Expanding your “Energy Envelope”

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Many new fibromyalgia patients tell me; “My doctor told me to exercise, but every time I go to the gym or work out at home I either wind up so exhausted I can’t move for days, or in so much pain I NEVER want to think about exercise again!”

It’s true that consistent aerobic exercise is a critically necessary part of your recovery from fibromyalgia. Consistent aerobic exercise increases energy, decreases pain (often as well or better than pain medications), improves sleep and mood, and can even improve cognitive function. In fact, most of us fibromyalgia specialists know that if our patients do not exercise they will not feel better, no matter what other therapies they are on.

Many doctors recommend fibromyalgia patients follow a “graduated exercise program” where they follow a prescribed exercise regimen and increase the amount they exercise every week even if they are exhausted and sore. Instead I have found  by adapting the concept of the “energy envelope” coined by Leonard Jason PhD et al (see link below) to my fibromyalgia patients I can often get them exercising and feeling better. Dr. Peter Rowe recommends this approach for pediatric chronic fatigue patients, but I have found it works well for kids and adults with fibromyalgia.

Here’s how to do it: you always need to stay within the boundaries of your energy level–your “envelope.”  If you are very symptomatic then your energy envelop is quite thin. You need to figure out how much exercise you CAN do without bursting through the envelope and crashing. So you walk for 5 minutes every other day for the first week. By consistently doing the exercise that does not stress your body, you stay within the envelope and actually expand it so over time you can walk for 6 minutes then 7 minutes, then 8 minutes in a session–the goal being to get at least 20 minutes of aerobic exercise at least 4 times a week. Your energy envelope has then expanded so that has lots of room inside! You slowly and gently get in shape by adding about a minute of time to your routine every week.

You can read the article here:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596172/

Do you want to get all the benefits of exercise? Start by doing what you can do on a regular basis (4 times a week) and then slowly add a bit more time every week. Swim, walk, bike–your choice. Give yourself the benefits of exercise PLUS enjoy active time with family and friends. See you on the trail!

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My Thoughts on the JAMA article: “Fibromyalgia: A Clinical Review” by Daniel Clauw MD Part 1

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On April 16, 2014 the Journal of the American Medical Association published “Fibromyalgia: A Clinical Review” by Daniel Clauw MD.

What I love about the article:

1. The fact that JAMA published it at all–the last time JAMA published an article on Fibromyalgia was in 2009! The review article notes that fibromyalgia is common (2% to 8% of the population) so it’s about time JAMA published an article about a condition may affect 16 million or so people in the US alone (using 5% of the population).

2. The pain we are feeling is real. Dr. Clauw notes that studies show we “feel more pain than would normally be expected based on the degree of nociceptive input.” That’s right. We feel it. We are not making it up. Just because people without fibromyalgia do not feel pain at lower thresholds doesn’t mean WE  don’t actually feel it. Our pain sensations are real.

3. Don’t withhold the diagnosis from us. Dr. Clauw states “some believe that a label of fibromyalgia may harm patients. However, studies suggest that the opposite is true: a diagnosis of fibromyalgia can provide substantial relief for patients.” Spot on. First we need a diagnosis. Only then we can figure out how to get better.

4. Kids have fibromyalgia too! Dr. Clauw writes; “Fibromyalgia can develop at any age; including childhood.” So true. I treat many children with fibromyalgia, and most of the time they respond to treatment very well and very quickly. Now if only pediatric rheumatologists would get more comfortable making the diagnosis then thousands of children could get treatment sooner, sparing them months to years of worsening symptoms.

5. Your doctor’s toolbox better contain more than just pain meds. Dr. Clauw states; “If clinicians treat fibromyalgia or other chronic pain conditions with drugs alone, they will fail.” So true.

Click here for article.

Stay tuned. Next week my blog will detail what I do NOT like about this article.