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Posts Tagged ‘fatigue’

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)

Fatigue, Fibromyalgia & Denial

September 21st, 2009

Hello friends. I’ve been quiet lately. Had a marathon summer with a lot of work and a daughter to get off to college. She is off, settled in, working hard, and having the time of her life. I flew back from three days away, moving her into her dorm, and then I attended the International Headache Congress in Philadelphia for two days, then I spent a lovely day in Manhattan with cousins from the west coast, then I spent a day working, then I went back to Philly for a first appointment at the Jefferson Headache Center, then I collapsed.

I will post about the IHC, and about my appointment at Jefferson, (both of which were great) later. What I want to talk about today is “then I collapsed” part. Well I do have to touch on the appointment at Jefferson… mostly what was discussed was my Migraines and my anxiety level. I was very happy with the care I got, the thoroughness of the history taken, the look at Migraines in the context of a whole life. I have new treatment options and new hope.

It felt like almost a side note to the exam, when the doctor pressed certain points on my body which hurt tremendously.  Once he had pressed a half dozen, I realized what he was doing – pressing the fibromyalgia tender points.  One of the diagnostic criteria for fibro is pain in at least 11 of the 18 points – well, I had a great deal of pain in 14! He asked me if I feel pain in my body on a daily basis and I said there were days when I’m achy all over, but I’m not aware of much pain in my body much of the time.

But over the next few days I couldn’t stop thinking about it. My 10 day marathon of travel, launching a daughter, conference, appointments, left me bone weary and aching. You know when you first notice something you haven’t seen before, and all of a sudden you see it all around? I had this sense of a puzzle piece clicking into place. Why do I fatigue so easily? For the last few years when I exert myself in any way, whether it’s physical exercise, mental or emotional stress, or just being on the go for a number of days in a row, afterwards my entire body aches. For days. I have become terribly sensitive to touch, where someone bumping into me actually hurts, instead of just being jarring.  My husband and I were lying on the bed talking the other day and he had his hand on my calf. His thumb was resting on my shin, and after a few minutes just the weight of that thumb began to actually hurt.

I know people with fibromyalgia, and there are plenty of Migraineurs who also have fibro. I’ve read about it, and I have wondered for some time if I might have fibro too. You’ll see in my profile that I say I have chronic fatigue, but I’ve always had some question about that diagnosis, which was more of a suspicion by my family doctor than a real confirmed diagnosis. Up to this point, though, I have avoided looking into it for myself. I don’t want to face having another chronic illness. I want to live in the illusion that my limitations will go away someday. Ha! Oh well, a girl can dream.

I will investigate this further; I will talk about it at my next headache appointment. I know there are treatment options and support available. It’s kind of silly, really, to prefer denial. Having all the symptoms I have and no name for it really isn’t better than having the symptoms with a name. Knowledge really is power. I hear that the drugs used to treat fibro are really good for treating Migraine too, and many people’s Migraines improve when their fibro is treated. We’ll see. I still kind of want to stick my head back in the sand. Except I know my neck would hurt for days afterwards.

– Megan Oltman

Logan Square fountain image courtesy of Conspiracy of Happiness; shoulder image courtesy of Barbarellaa.

Tags: denial, fatigue, fibromyalgia, fibromyalgia tender points, migraine
Posted in Communicating, Managing, Medicine | Comments (2)

Coping with Fatigue

March 1st, 2009

It’s my second day in a row where I feel achy and tired all over and just can’t get going.  I’ve had my 8 1/2 to 9 hours of sleep; I have been taking it slow and easy.  This kind of fatigue is a common reaction for me when I have travelled or otherwise exerted myself over several days.  I guess a 3 1/2 hour drive to Washington, an evening of training, a late night, a day of lobbying with a Migraine at the end of it, a morning meeting then another 3 1/2 hour drive, then 2 busy working days, count as exerting myself.  It feels as if the tiredness stores itself up in my muscles and doesn’t drain out for days on end.

It used to be that I felt like this every day, five or six years ago.  That was before I began taking thyroid supplements and bio-identical hormone replacement therapy.  It was also before I began practicing good sleep hygeine to manage my Migraines – getting enough sleep and the same amount, at approximately the same time, every night.

I have learned not to push myself when I feel this way.  I will recover faster if I rest and take it slow than if I try to power through and get a lot done.  It’s hard, though, to cope with the mess around me and not be able to do much about it.  It’s hard to cope with the reality that I have a lot of days like this, and I can’t get done what I once could.

My primary doctor diagnosed me with chronic fatigue syndrome about six years ago; his treatment approach to it is mainly to seek to balance my hormones and that has helped a lot.  Coach Debra Russell of Artist’s Edge helped me too; she and I traded coaching and it was Debra that taught me that when I am fatigued, I need to rest. Period.

Now I find myself wondering what else is available.  As I work with migraine sufferers and other chronically ill folks, I have read some more of the chronic fatigue and fibromyalgia literature.  I have to admit to a certain level of denial rearing its ugly head for me once again – I don’t want to face the possibility that I might have fibromyalgia as well.  Of course we all know how silly this is (and denial always is silly, powerful and destructive though it may be) – because if I have it, I have it, whether I know it or not, and it’s knowledge that is power, not ignorance.

Well, friends, I make my promise to you – I will go read up on cfs and fibromyalgia and find out what else I should be doing to take care of myself.  Today it looks like I’ll be getting the taxes ready from my semi-recumbent position. Nice and restful, eh?

– Megan

Tags: bio-identical hormone replacement, chronic fatigue syndrome, Debra Russell, fatigue, fibromyalgia, migraine, over-exertion
Posted in Communicating, Managing, Musings | Comments (0)

Migraine Prevention – Early Success

November 12th, 2008

Shhh… I’m whispering so the Migraine monsters don’t hear me and punish me… Oh yeah, that’s kind
of like believing in ghosts. But I seem to be having some success with the topamax I’m on for Migraine prevention. I have a Migraine this evening, but I’ve been running six to eight days between Migraines, for the last three or four weeks. For a year and more before that I had been getting several Migraines a week. So the frequency is cut in half, which makes a big difference. These are early results – I’ve had good 3 or 4 week stretches before, so I can’t predict whether this will continue. But I am hopeful!

I’m still on the minimum topamax dosage. I would have increased it several weeks ago but for a switch in insurance carriers making it necessary to delay the glaucoma test Dr. Gerhardstein wants me to have before increasing the dosage. Now I am happy we have taken it so slowly. Clearly my body has had a chance to acclimate itself to the medication. I am not experiencing any of the side effects I had in the first couple of weeks, either.

The biggest surprise to me is that I have more energy generally. I am not exhausted in the afternoon and evening; I feel motivated and I am getting more done. The constant low level of head pain I lived with most of the time is just gone – it seems to me that pain may have been responsible for a lot of my fatigue in the last year. The last two weekends I have done yardwork and projects around the house that I have wanted to do for ages.

There is a downside, though. It’s very easy to start feeling like Wonder Woman in contrast with how I felt before. So once again I need to practice what I preach! Along with my clients, and you dear readers, I need to find that middle ground! For over five years now I have known that to have balance and well-being, to keep my energy up and my Migraines minimized, I need to pace myself. I need frequent breaks, and shifts in focus. I need time off in the middle of the day where I truly rest. I need to pay attention when I feel myself getting wired, when my blood pressure goes up, when I start moving and talking fast, when I feel the muscles in my forehead and scalp begin to contract. These are danger signs for me. Not least because I enjoy them – I like that edgy feeling of moving fast and powering through. But that energy is inevitably followed by a Migraine crash.

A few energy management tips:

1. Take a break or shift your focus every 45 – 90 minutes. If you are at a computer get up, stretch and do something else for a few minutes.
2. Take “green breaks” where you go outdoors, look outdoors through a window, look at a green plant, or at the very least look at a picture of a green plant. 2 – 5 minutes can make a huge difference.
3. Take deep breaths to slow yourself down if you feel your energy or stress level mounting.
4. Be sure to take a real break in the middle of the day – don’t work through lunch.

I failed at finding the middle ground today. I got a lot done, but there’s a price and I’m paying it. And so I learn my lesson again. I’m grateful to have more energy and less pain, and I’m committed to maintaining my energy by using it wisely! Let me know how you’re doing with your energy today!

– Megan

Tags: energy management, fatigue, Migraine preventive medication, relaxation, Topamax
Posted in Managing, Medicine | Comments (2)

Where did Megan go?

August 13th, 2008

A big gap in posts here, but not due to Migraines and illness, for once.  I took my daughter on a trip to look at four colleges in the mid-West.  Perfect weather almost all week, some very promising colleges, and we had a fun time – many hours of cracking each other up

in the car, and some lovely visits with old friends.  We were in the Windy City,

and the Twin Cities, and many miles of America’s Dairyland in between!

I had only one Migraine on the trip – the day we flew in.  The triggers were two nights of insufficient sleep, stacked with the change in altitude on the flight.  I had two marathon days of driving, which certainly exhausted me, but didn’t trigger any Migraines, I’m happy to say.  Clearly fatigue and stamina are issues for me, but I was glad not to be coping with frequent Migraines as well.  Stress may not be a direct trigger (I have my doubts) but a trip away from the daily stresses of my life is always welcome!

– Megan

Walker Sculpture Garden image courtesy of Eli Duke; Wisconsin Farm image courtesy of Randen Pederson.

Tags: fatigue, migraine, Migraine triggers
Posted in Travel | Comments (3)