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Posts Tagged ‘fibromyalgia’

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

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Posted in Communicating, Managing, Musings | Comments (0)

How much Pain?

December 2nd, 2009

My daughter had her wisdom teeth out yesterday. Once the anesthesia wore off she started feeling pretty serious pain. She took her first Lorcet and called me on the intercom about half an hour later, sounding panicked – she needed more pain meds, right now! We got her some ibuprofen, but tried to explain that the meds take a while to take effect, and to give it a chance. Today she is in bed with a swollen face, pain and nausea, quite miserable. We’re bringing the ice packs, the medications, the mushy food, and trying to comfort her the best we can.

I’ve been thinking about the nature of pain. At nineteen, my daughter has never had surgery before, never had a broken bone or other serious injury, and the only serious illness she has had was the chicken pox at age four. Her pain today is real and I can’t be the judge of how much pain she has. Her pain may be worse because unfamiliar. When I was her age, I had had: Migraines for at least six years, a broken arm, stitches on my face, major abdominal surgery, the mumps, the chicken pox, scarlet fever, the measles… Pain and I were old acquaintances (I won’t say friends). I have written before about how you never get used to pain. Pain is, in some ways, continuously and horribly new every time, every moment. But at the same time, pain can become familiar, and for that reason, perhaps less frightening.

The most severe pain I can remember was when I broke and dislocated an elbow. I went into shock, I believe from the pain. Both my labors were quite painful, as I had an unproductive pattern of contractions, which came two or three in a row without pause, and each set didn’t do as much work as one normal contraction. Childbirth pains are different, I think, because any pain you experience is for something, something big and very important, and you know there is an end in sight. At twenty-nine I fell and herniated a disk and lived for years with nagging, stinging pain in my low back and right leg. I have also had Migraines where the pain was so intense I felt moment by moment as if I could not stand one moment more, where all I could do was rock myself and sob, to quote a Migraine buddy of mine. I also had my wisdom teeth out at twenty-two and I don’t remember how that pain compared, but I do remember two miserable and very drugged up days.

I have learned, though, that something changes when pain is familiar, when it is not mysterious. Yes, frequent severe pain is debilitating, exhausting, dis-enheartening beyond belief. But at the same time, with familiarity it can lose some of its power over us.

What do I mean by that? This is difficult to talk about. Pain is real, but at the same time our experience of it is subjective. It’s not “all in our heads” in the sense of being imagined. It is not produced by neurosis or by being weak or hysterical. But at the same time, we can change and effect our experience of pain. When my Migraines became very frequent, I learned a practice of deliberate relaxation, based in yoga, biofeedback and guided imagery. A part of the practice is to look at pain head on – to be very aware of the experience of pain. Not to fight it or try to pull away from it, but to meet it, recognize it, describe it and observe it. In that process we get some detachment from it. Sometimes we can reduce it significantly, or make it disappear. Even if that doesn’t happen, we can make it much easier to bear.

I teach these relaxation techniques to Migraineurs and others with chronic illnesses because I believe we can truly make a difference for ourselves when we learn to focus inward. I believe we should fight for better treatment, strive and work to understand and manage our own systems, but when faced with pain we must practice a kind of acceptance. I’m not talking about being a doormat or giving up. I am talking about looking the pain in the eye – saying yes, there it is, it feels like this, it is this much better or worse than any other pain, it is located here, it behaves like this. Observing it, allowing it to be and allowing it to fade.

I’m not saying this is easy. Don’t ever let anyone tell you you should “just” learn to live with it. There is no “just” about it – it’s hard and takes continual work. I use relaxation zealously in the tough times and then I slack off, and have to pick it back up and get back in practice when the next challenge comes along. Overall I have developed an awareness of my system and its ups and downs. I have less pain in my life, and the pain has less effect on me, than before I began these techniques.

There may be some kind of threshold level beyond which the rules change, or become distorted. I haven’t experienced really frequent or chronic severe pain. Six years ago my Migraine pattern suddenly increased, from a monthly menstrual Migraine plus one or two big ones a year, to three or four major Migraines a week. That was the closest I have come to experiencing truly chronic pain. And three or four times a week I felt something like the panic I heard in my daughter’s voice yesterday. Nowadays pain doesn’t panic me. I may get cranky and resentful, but sooner rather than later i say to myself, Okay here it is again. Be with what’s so, and do what I can to help it ease or pass.

I am learning a new kind of pain as I adjust to fibromyalgia. My body has become a pain amplifier, and a small pain can grow outward with ripples over a day or more until I hurt everywhere. I am having a flare-up today. I ache from head to toe. I am grateful that despite the allover aches, I don’t feel the constant severe pain I hear of from some with fibro. I am practicing what Migraines have taught me, to pace myself, to push only gently, to be with the pain, not to fight it, to know that this too shall pass.

I’m hoping for a better tomorrow, for me, for you, for my daughter. In the meantime, I will be with what’s so. My arms ache and I’m going to rest now.

- Megan

Wisdom tooth image courtesy of Steve Montgomery; broken elbow image courtesy of H Dragon.

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Posted in Managing, Musings | Comments (3)

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.

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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

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