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Posts Tagged ‘disease management’

Fibromyalgia – a New Context

January 7th, 2010

The context in which we look at an issue can make a huge difference in our way of perceiving and interacting with the issue. When I began exploring the on-line world of support for Migraineurs and chronically ill folks, I came very early upon Teri Robert’s site, Help for Headaches, and there on the site, she had this badge:

I wondered at the time, was this really empowering, to emphasize having a disease? It is a disease, but we can have an impact on our own health by developing an awareness of our own systems, and learning to relax and calm their reactivity. I had spent some years learning that myself and that’s what I wanted to share with others.

The more I looked at it, though, the more I got Teri’s point. I realized that for the many of us who have had our condition minimized and scoffed at, the recognition that we have a disease is empowering. Our problems are real, and biologically based; our pain is real. We live with the consequences of having a hyper-reactive nervous system. For those of us who have wondered what was wrong with us, if we were crazy, if we were somehow bringing the pain upon ourselves, it is empowering to recognize that we have a disease, not just a headache! Starting from the context of a disease, we can learn about it, learn what impacts our disease for better or worse, learn to manage the disease, and to manage our life with the disease. Acceptance is the first step, and gives us a foundation to build on. It makes it possible to move forward. We can say, “Okay, I have this disease. Now what? What am I going to do about it?”

For over 15 years, since I was pregnant with my son in the fall of 1994, I have been living with fatigue, lassitude, body aches, on and off difficulty concentrating, frequent sinus infections, difficulty fighting off disease, and, in the last 10 years, ever increasing Migraines. I have gone down many paths to address these issues. With regard to the Migraines, I learned a great deal about the disease, worked with doctors to find medication and supplement combinations that helped me, and learned to practice relaxation to calm my system. My Migraine frequency is down considerably. Not so the fatigue and general pain issues, however. I have tried many different nutritional regimens, and learned a lot about what foods are most helpful to my body. I have gone great lengths to balance my hormones, and have definitely seen an improvement in my overall health and stamina through doing that. No matter what I did, however, the fatigue and pain issues did not change much.

Many people with Migraine also have Fibromyalgia, and as I got to know more people with Migraine I heard a lot about the other disease as well. My reaction for quite a while was, “Oh, I probably have that one too, but I don’t want to know about it.” It felt overwhelming to me to have to deal with another diagnosis. I practiced active avoidance. Then I saw Dr. Young at Jefferson Headache Center and he listened to me talking about my fatigue, and he pressed the Fibromyalgia tender points, and I gained a new context. Thanks, Dr. Young!

I’m not kidding with the thanks. It was just like Teri’s badge above, the pieces of a puzzle came together. I already knew that my central nervous system had some serious processing issues, well this was just another manifestation of that. In addition to having my neurons fire off and produce Migraines in reaction to certain stimuli, I have an increased reaction to pain and exertion. If I bang my elbow, the pain moves out in ripples from the point, increasing for a time like an echo in an echo chamber. If I expend more muscular energy than usual, my muscles ache for days as if I had the flu. If I am active and push myself either physically or mentally, I have a kind of fatigue that is beyond tired; it is the bone-weary exhaustion of someone who has been pushed beyond the limits of their endurance.

I have gained a lot from the context of having another disease – Fibromyalgia. I have gained a community of fellow sufferers, who care, who understand, whose wisdom and experience are available to me. I have gained the relief of knowing that I am not lazy, or losing my mind, or fundamentally bad, I am a person with a(nother) disease. And this context helps me to find solutions. I know now that stretching helps, and I can push myself to stretch when my muscles hurt and I really don’t want to. I know that my fatigue is not something to fight or to cover over with caffeine, but that it is a signal to rest. I know that getting some gentle exercise each day, and gradually increasing my exertion, will help me. I know that there will be better and worse days, but that each day can be handled, one at a time.

I haven’t posted for a while, and I’m glad to say that my new Migraine preventive is helping a great deal. My Migraine frequency is down by about 60% over the past few months. The medication also helps to damp down my anxiety and makes me very sleepy. It seems to increase my REM sleep, which is a sleep stage that Fibromyalgia often steals away. Sleeping better definitely impacts the Migraines; it also makes me less fatigued and less anxious. So at the same time that I have taken on this new diagnosis, Fibromyalgia, I have seen some of its symptoms decrease.

I’m learning this one. It’s a listening to my body, to my inner sense of myself, in a new way. Similar to the way I already listened, a familiar tune but in a different key, perhaps. The biggest gain from the new context is another level of self-acceptance. I am not a bad person trying to be good; I’m just a sick person learning to be as well as possible.

– Megan Oltman

Tags: disease management, fatigue, fibromyalgia, migraine
Posted in Communicating, Managing, Musings | Comments (0)

Managing Life with Migraine – Calls with the Experts

March 27th, 2009

If you’ve read my blog (and I know you’ve read it cover to cover, all 140+ posts, right? oh, well…) you may know something of my story. I’ve been working from home since my daughter was six months old, almost 18 years ago, when I discovered that my legal job wouldn’t allow me to return to work part time.  Three and a half years later my son was born and that’s when my odyssey with chronic illness began.  I learned a lot about managing life, with a business, with children, and with chronic illness.  Eventually I put aside my legal practice and became trained as a professional coach.

After 7 years of coaching I had one of those aha moments where I realized I had a lot to offer, to help Migraine sufferers and other chronically ill people learn to manage their lives with their illnesses, to live the best, most purposeful and rewarding lives they can, to build businesses or stay employed if possible, to minimize the impact of their disease and maximize their joy. I helped a few face-to-face clients this way, but started exploring the internet as a way to get more help to more people, more affordably.  That’s why I’m here.  That’s why this blog, this site, the relaxation teleclasses and recordings, and some more products to help you coming soon…

In the course of starting this, of creating this thing called Migraine Management Coaching, I have gotten to know all these wonderful people who are committed to making a difference for people with Migraine and chronic illness. First and foremost, my dear friend Teri Robert who has taught so many people how to be an informed medical consumer and get the care you need. And so the idea of the Managing Life with Migraine free teleconferences was born.  We’re starting in two days , on Sunday March 29th, and continuing on the last Sunday of each month, 4 PM eastern time, talking with a series of experts on topics that will help us manage our lives with Migraine!

Register now for our first call on Sunday, March 29th with Teri Robert – Writer, Author of Living Well with Migraine Disease and Headaches; Patient Advocate; Lead Expert, My Migraine Connection.

Topic: Taking Charge of Our Migraine Care – What Do We Need to Know and Do to Advocate for Ourselves and Be Informed Medical Consumers.

There is no charge for the call, but you need to register to get the call details!  You can Register Here.

– Megan Oltman

Tags: disease management, managing life with migraine
Posted in Advocacy, Managing | Comments (5)

Update from Migraine-land

May 5th, 2008

My computer is well again, thank goodness.  And I have just been through a bad migraine patch – 6 of the last 11 days.  For those with Chronic Daily Headache or Chronic Migraine (Migraine 15 days out of the month), that may not sound too bad.  A few of my migraineur friends have lived with the same migraine for 6 weeks or 5 months.  On the other hand, for others who have 1 or 2 migraines a month, or less, that may sound awful.  I used to have 2 a year.  The good old days!

(By the way – do I have Chronic Migraine myself, or is mine still considered episodic?  I have not hit the 15 days a month marker yet, but I seem to be close some months.  We’ll see what Dr. Young has to say at the Jefferson Headache Center when I go in June.)

But life goes on.  I learn more all the time about managing this disease.  I always try to share what I am learning.   I have been thinking a lot about managing Migraine triggers.   Part of my recent bad streak is probably due to having been in a course that activated many triggers for me.  Lack of sleep, florescent lights, lots of noise, having to concentrate way beyond my fatigue point.  It took me about 4
days to recover from 2 days in that course.  It was a price I paid willingly for a useful piece of professional knowledge.  I can’t always avoid triggers.  But I will try not to do weekend courses like that without spending a few days in bed afterwards.

My friend, neurological-chiropractor Dr. Heidi Kaufman introduced me to the concept of neural fatigue.  I
haven’t found a good reference on this yet, but basically the idea is that neurons get tired out and stop functioning as well.  I experience this when I am exposed to a lot of noises at the same time – I lose my ability to sort one sound from another and all I hear is undifferentiated noise.  Parts of the course were like that, as some participants insisted in talking across the instructors.  I believe this is an instance of what Dr. Hayrunnisa Bolay described in her research findings of

a mechanism that leads to problems with discrimination of tones and
lateralization of sound, particularly in a noisy environment, in
patients with migraine.

“Cochlear Dysfunction Apparent in Migraineurs,” April 12, 2008, RM Global Health. (Thanks to Rain Gem for pointing me to this fascinating study.)

Another instance of just how weird this disease is:  for some time now when I am fatigued, I have trouble with spatial perception.  This occurs most often in a car, where I have trouble perceiving how close or far away other objects are.  It feels like everything is moving too fast for my brain to catch up, to quote one of my buddies in a recent discussion on the MMC Forum.  I find myself afraid I am going to fast, or that I am about to hit something when there is actually plenty of room.  In case you’re worrying, I pull over right away if this happens when I’m driving.  It happens most often when my husband is driving, and I flinch and gasp at what appear to me to be near misses, when actually he is leaving sufficient distance, slowing down and stopping quite appropriately.  I am wondering if this is an instance of Alice in Wonderland Syndrome, an unusual sort of migraine aura which affects spatial perception.  I enjoyed this article in the NY Times blog a few months ago, and here’s a new one from Teri Robert: Alice in Wonderland Syndrome – The Basics.  Since Lewis Carroll was a migraineur himself, he may have been describing his own experience when he wrote of Alice’s strange growth and shrinking.   Adventures in Migraine-land.

I may appear to be rambling.  I may, in fact, be rambling.   I’m leading an exploration of migraine triggers right now at WEGO Health.  It’s part of a series of lessons on Migraine Management Coaching.  Please come and visit if you’d like to look more deeply into what may trigger your migraines, and how to manage your triggers!

– Megan

Now the dogwoods are blooming – life is great!

Tags: Alice in Wonderland Syndrome, chronic fatigue syndrome, chronic migraine, cochlear dysfunction, disease management, migraine, migraine aura, neural fatigue
Posted in Managing | Comments (4)