When did you first get sick? How did you come to your diagnosis? Please describe a little bit about the process for my readers.
I initially became ill in 1988. It felt just like I got the flu, except that it didn’t resolve. I remember being very worried that there was something terribly wrong with me. Tests kept coming back negative and I would begin to doubt myself, but then all I would have to do was draw my attention to the aches, chills, tiredness and pain and I would regain my certainty that something was there.
It took four years to get a diagnosis, and I had pretty much self-diagnosed by then and simply sought out a CFS specialist who could confirm my suspicions. I had been to many doctors who wanted to test me repeatedly for innumerable conditions, but were reluctant to, or adamant not to give me a diagnosis of CFS.
Up until the diagnosis, I also experienced doctors who wanted to delegate each of my symptoms to a distinctly separate cause or origin. For example, they said my wrist pain was carpal tunnel syndrome and my blurred vision was age-related. That felt very unsettling to me and my gut knew it was wrong.
What was life like before CFS?
I think I had a pretty typical life before I got sick. I was young enough that a lot of my life was yet to unfold and reveal itself, so there was this promise of possibility in each day. I had a great job, but hadn’t gotten a degree yet. I was married to a great man, and we hadn’t had children yet. We had a large social circle and family close by, so there was a lot of hanging out with loved ones.
I guess I had a lot of energy. I remember working through many of my lunch breaks doing some volunteer projects. A friend describes me like a tornado entering a room. My job was central in my life and I socialized with colleagues after hours. I was in my thirties, life was bright, I had many friends and we were buying a house in a lively urban neighborhood. Our quality of life was great.
I was very healthy and always had been with one exception. When my older sister died in 1979 of leukemia, I developed panic attacks and depression and was put on anti-depressant medications. They did work for me and I had been pretty stable on them for several years when I got CFS.
How did you reach the point of self-awareness that allowed you to make such significant attitude changes?
The first thing that comes to mind is that I was observing how everyone else was approaching this illness. Doctors and patients alike seemed to me to be spinning their wheels with treatments that simply weren’t effective. I knew people who were taking twenty or more supplements and prescription medications each day. It didn’t look to me as though most of them were benefiting – it just looked like they were being swallowed up and becoming wiped out financially along the way. At the same time, I saw a lot of martyr-like behavior, little self-love, an intense rejection of their current reality and a struggle to get back to where they were pre-illness.
I realized that my CFS might not be going anywhere and I calculated approximately how many more years I could expect to live and that made me see that things were simply unacceptable as they were. I honestly have a hard time accepting powerlessness in my life. I knew that what I was looking for wasn’t going to be found in a pill or a healing modality. So I did the only thing that was left and looked inside myself.
I was ready to be honest with myself and I could easily see where I played the martyr, for example, by not taking good enough care of myself. I asked myself who benefited and saw that no one did. It was obvious that it only served to hurt me by hindering my recovery. So I made a conscious choice to love myself enough not to do that anymore. This meant resting, making appropriate adjustments in my job, saying no to invitations or obligations when I really needed to rest; things like that.
I don’t think the self-awareness was as difficult as the self-honesty. It’s hard to admit to some of your own dysfunction. I had spent a lot of time around others who were ill and it was much easier to see it in the way they dealt with their own poor health. I, too, was consumed by my illness – I had let it define me. I knew this was not serving me.
I like to use the analogy of Alice falling down the rabbit hole. When you get a chronic illness, you fall down that hole. You land with a thud on bare earth, in the dark. Your old life is barely visible above, but you can’t get to it. You can sit there in the dark for decades and cry about the life you had and try to figure out ways to get back there (that’s just a new life in the hole) or find another way out to a different life.
I think there is a role for the medical practitioner. They are essentially throwing a lifeline down into the hole. But you can’t be passive. You have to grab the rope and haul yourself up. It’s a joint effort. I think it’s common in our culture to be passive and expect that the road to cure is someone else’s responsibility. The illness is indeed physical, but the mental healing is far more arduous. We may be unable to cure the physical part, but we can comfort some of the symptoms medically. We can absolutely cure the mental part, which gives us back our life.
What is the best advice you've ever been given that has helped you cope with chronic illness?
To monitor my fear of what is happening to me. Frequently, my fear is far larger than the actual event. It helps me to keep my perspective.
How are things for you now?
I rarely have relapses or symptoms anymore, but I do take preventive measures as I speak about in my book. I work a thirty-hour week and my employer is great about accommodating me. For instance, I don’t have to be there at a particular time in the morning and I am set up to work from home, which I do for about twenty of those hours.
The one thing I don’t do much is go out at night. A doctor once told me that people with chronic fatigue syndrome live between 10:00 am and 4:00 pm. That is an incredibly accurate description of me. It’s not my old life, it’s not a life pre-occupied with my limitations, it is a life that is pleasant and where my limitations are diminished in importance.
What are the three most important things, in your opinion, that you need to combat CFS?
Commitment to doing whatever it takes to heal yourself, enough self-love and compassion to put yourself first and the ability to hold onto a belief in a better future and keep the commitment going even in the times of inevitable relapse.
Why do you think that so many spend time, as you put it in your book, "chasing a cure"? How can a person shift from chasing a cure to chasing joy?
I think it’s perfectly reasonable to focus your attention on a cure. In my case, I found it to be acting as a substitute for getting on with my life; for climbing out of the rabbit hole, dusting myself off and figuring out what kind of life I was going to have, if not my old one.
It can also be a distraction and a form of denial or even bargaining. It’s resisting where you find yourself. I found it to be energetically draining with its tendency to build hope and then dash it. To me, it was a sign that I was unwilling to accept that my old life was gone. But what had I substituted it with? Many people I know have two, three appointments a week between their primary care doctors, their endocrinologists, their psychiatrists, their acupuncturists, physical and massage therapists. This is their new life. I didn’t want that for myself. I knew that I didn’t want my new life to be focused on the fact that I was sick.
In my case the shift came when I accepted the reality of my situation and saw clearly that I needed to change the way I had been dealing with my illness, Following the instructions in My Own Medicine for making a joy list should be enough of a wake-up call to shift behavior. When we see how little we tend to such a simple thing, it is a call to action. And joy, as I like to point out, is so exquisitely powerful that a little goes a very long ways.
How do you keep joy in your life on a day-to-day basis?
When I first realized how important joy is in the healing process, I had to be kind of vigilant about it. I had made my list, as outlined in the book, and had added many of the simple joys. Even today, I have to check my closet a few times a year to be sure my clothes are colorful and that I own some things in periwinkle, my favorite color.
I acknowledge the financial reality, as many of us must. Still, I can easily have lilac in my yard and bring a bouquet into the house so I can smell that wonderful scent. When I wake up in the morning, the first thing I see is the adorable faces of my dogs, eager for me to get up and start a new day. So, I always start out with a smile.
I make sure I take the time for joy. So many things that give me joy can only do so if I am noticing them. I can’t enjoy a sunset if I don’t make the effort to slow down and look at it. Our culture is all about Fast! Fast! Fast! At one point I attempted to work a 40-hour week again and I had to bail. It just didn’t leave time to notice the changing of the seasons. It seemed like forever since I’d seen a squirrel in the yard. They were there, I just was pre-occupied working so many hours. There was no room for joy.
What's the most important thing you learned throughout this journey?
That you have to love yourself enough. That most people don’t. Excuses mean you aren’t.
Or would it be that you can’t wait for someone or something else to come along and pull you out of the rabbit hole. You have to make it happen yourself.
Or maybe that our expectations define our reality and that we therefore must let go of identifying so strongly with our diagnosis or our symptoms. Focus on something else – anything else. Focus on joy, on a bubble bath, on helping others, on coloring or painting or writing a letter to a friend.
Why did you write the book and what can we find in its pages?
I began writing My Own Medicine when I realized that there were no books out there that went beyond symptoms and treatment options, none of which produced any significant benefit. I was obviously getting better myself and I really wanted to hear about other people who had done the same.
Some time into my writing I realized I had been waiting, like so many others, for some magical cure to come from somewhere or someone outside myself. I had continued to mistreat myself long into my illness, by clinging to roles that no longer fit or denying my body the rest it needed out of a need for approval and my own stubborn definitions of what made me worthwhile.
I discovered everything in the book as I wrote it. I hadn’t realized I had been using a “formula” until I wrote it down. I didn’t realize I’d redefined and recreated my life until I was done. I wanted to share this with others because it is so simple and I thought that the information might help people reach a better place. CFS is miserable. Quality of life is hard to find. This book helps you find it. It gets you unstuck.
In the book I outline my own process from onset of my own CFS/FMS to diagnosis and through all of the challenges we are so familiar with in regards to relationships, self-worth, career and others. I offer up five steps to explore and I lead the reader through them. These steps are meant to be revisited and maintained. They are healthy, free of charge, require no appointments and are practical. If I relapse, I always look to these steps to see where I might need reinforcement. I offer them as a way out of the rabbit hole of grief and despair.
Is there anything else you'd like to tell my readers?
It’s not about whether you see the glass as half empty or half full. The glass just is. With chronic illness, it’s not helpful to pretend the glass is half full (denial). It’s also not helpful to see it as half empty (victimization, helplessness). When you can see that it just is what it is, you are ready to get on with living. My Own Medicine leads you to and beyond this point.
I send wishes and hopes to everyone with a chronic illness – that they can find their way out of the rabbit hole to love and laugh and warm their hands by the radiant fires of life.
©Diane Kerner2005 Deanna Couras Goodson Fibromyalgia and Chronic Fatigue Syndrome Hostess http://www.bellaonline.com/site/fibcfs fibcfs@bellaonline.com
Interview for Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome
This interview is for the second edition of the book, so it builds on the interview performed for the first printing.
Since completing our original questionnaire, has your condition improved, worsened or gone into remission?
At the time of the first questionnaire, I was just beginning to understand how to make choices that truly supported my healing and allowed me to move on from being consumed by my illness to learning to live life with my illness. I am not cured, but am less impacted by my CFS/FMS on a daily basis.
I still struggle with the learning, trying not to fall back into seeing myself as a victim when I have relapses, which can feel as devastating as ever. I especially remind myself not to fear the relapse. I have found that the fear I add makes it much more unbearable than it would be otherwise. That, at least, I can control.
Other than my attitude, which can certainly be useful as a self-help tool, my illness has remained pretty consistent (meaning inconsistent – isn’t that its nature?!)
How has your life changed since we last talked to you? Have you begun to work again? Have you furthered your education?
I am still working roughly 30 hours a week, as I was before, but my employer has added more accommodation. I am now set up to work completely from home, but normally go in to the office two days a week totaling maybe twelve hours. I am also allowed to start work later in the day.
Because an education generally means that you have to show up somewhere pretty consistently, I have ruled that out for myself. That can make me sad, as I love learning. Distance learning would be an option, but the idea of sitting at the computer that much is unappealing. If the finances didn’t get me first, these things would. I read a lot on my own and think of life as my university. I don’t think of my life as over or that my future will look just like my present, but remain open to the possibility of surprising and exciting possibilities showing up at any moment.
How to include volunteer work has been a burning question where my limitations have often disturbed me. At last, a friend and I have come up with a way to feel like we are able to do something positive in that regard. We started a company called Peter’s Garden in which we give away free dahlia tubers in exchange for a promise that the grower will give the flowers away as random kindness bouquets during their long blooming season. Also, when they divide these plants themselves in years to come, they can pay it forward by giving the tubers to others who commit to giving the cut flowers away. This gives us a great feeling of spreading good in the world, yet we only need to do a bit of work every other spring or so dividing and giving away the plants. Giving and receiving fistfuls of beautiful dahlias makes everyone feel good and Peter’s Garden grows exponentially without our direct involvement. This is something we can do.
In addition, I have written and published a book on chronic illness and am starting to do speaking engagements for people with chronic illness and also to doctors and other practitioners who treat people who are chronically ill. The idea of helping others with CFS/FMS is something familiar to many of us. Writing a book felt like a monumental task until I broke it down into smaller steps without insisting to myself that it must become a book someday.
What have you learned about yourself since completing our original questionnaire?
I have learned that my answer isn’t necessarily everyone else’s answer, that different things work for different people and that what helped one person, might not be the best avenue for another. I’ve learned to be my own best judge and counsel and to do whatever I can on my own to help myself have a better life. I’ve learned that you really have to love yourself enough to do whatever it takes to get as well as you can. I’ve come to understand how many people with chronic illness become stuck in the grieving process and how it is necessary to recognize this and learn to move on and create a new life. Also, I’ve learned that the subconscious mind cannot be ignored in the treatment plan.
Has having FM and/or CFS changed your outlook on life?
Oh yes! I don’t take my health for granted. I don’t neglect to care for myself and practice loving myself enough to do what nurtures me. I can always look at all that I have lost, but prefer to see that I just live differently than I had thought I would - for now.
It’s easy to feel left out of life. All of the television, movies, books and talks of going after your dreams, reaching peak physical fitness, looking and feeling younger, showing up for events that occur at night – this is not a world I normally can play in. I figure I am most likely to have functional time between 10:00 am and 4:00 pm - that’s six hours a day times seven days equals forty-two hours a week to carve out some kind of quality of life for myself. I try to use it well and cram in as much of the stuff that gives me joy as I can.
I returned to work when I felt that I could for financial reasons and, I guess, a kind of mind-set that that is what people do: they work. In retrospect, it is hard to understand why I focused on that as my brass ring of successfully getting through the CFS. Perhaps I thought that going back to work would make me “normal” again and I would magically get my old life back. I think that if you can do work that you love and are passionate about, that is an enhancement to your life, but if you’re just working because that’s what’s expected or you need the money, you might regret it and you may be more symptomatic than you would otherwise be.
With CFS loving the ordinary is my challenge. I have learned to get more mileage out of the beauty of a cherry tree in bloom than a night out on the town.
Think back to before you experienced symptoms of FM and/or CFS. How does your life now compare to your life before your illness?
My life is completely changed. I was much more active physically and socially before I became ill. I had my whole life ahead of me and all options were open. I sometimes become acutely aware of how I am not like everyone else. There are many things I do not even dream of doing now, so letting go of the thought that I can do whatever I dream of has been lost. At the same time, I think that if you can be creative and flexible enough you might be able to do many of the things you want, you just might have to approach them differently.
Compare the goals you had before your illness with the ones you have established since your diagnosis. How have your goals changed since we last talked to you? Have you achieved any of your goals?
Before my illness I wanted to go to college and get my degree in child play therapy. I have tried to manage school twice since becoming ill and have had to drop out. I still believe that a psych degree would have been the best fit for me. I have a job, but it is not what I would have chosen to do had I felt I had limitless options.
I have completed my goal to write and publish a book and my goals today center around promoting and helping others through my book. Otherwise, I remain open at all times to things I am able to do and feel passionate about. I always know that the perfect thing is coming. I am ready to dive in.
I live each day with the intention to get the rest I need, enjoy everything there is to love in my day, and attempt to keep the internal chatter positive.
Do you try to think positively about your illness? If so, how has this "positive thinking" been beneficial to you?
I don’t think positively about my illness, rather I try not to think about my illness at all so I can feel more positive. I think this is especially important to prevent being swallowed up by self-pity and dire expectations. I am happier if I can separate myself from my illness – I am so much more than a person with CFS.
What drives you forward every day? What are your rewards in life?
There is reward in each moment I am focusing my attention on something beautiful, like a flower, a scent, the face of a loved one, the warmth of the sun, the sound of water, the possibilities for joy. And, of course, any moment I can eat chocolate!
In terms of driving me forward, I’m not sure I am driven. I just live. I know that there might be another day for me. If there is, I hope I use it well. I think you just can’t feel sorry for yourself – you have to get over that. You can’t really start living again until you can let that go. This is what you get for today.
Has having FM and/or CFS effected your spirituality or religious beliefs?
It’s given me time to explore more. I’ve always loved to read and I’ve always hated boredom, and it’s easy to get bored with CFS. I read a lot – mostly non-fiction and a lot of books that give me hope. I would love to belong to a spiritual community and especially to join a choir or a group that chants, but so far my energy has been too unreliable to commit to things that require that I actually show up somewhere.
I’m still full of the questions. I swing in and out of phases where I add spirituality into my routine; things like meditation or ritual.
Do you find there are societal pressures on people who are chronically ill? If so, how do they effect you?
I feel that there is a lot of cultural insensitivity, but no real pressure.
Have you identified your personal life-stressors and are you actively dealing with them?
Oh yes. Stress can be toxic, so I must deal with reducing it. Some things cannot be changed. I try to set my life up so there are few of these situations. I stay aware of and honor my thresholds.
How do you cope with having FM and/or CFS? Do you have any everyday tips you would like to share with other patients?
These are the things I do to cope: I try to focus on living my life rather than living my sickness, I try not to be afraid for the future. I have a few friends who are also ill and who I can groan to/with occasionally. I get joy wherever I can. I pamper myself always. I pace myself, taking lots of breaks and switching tasks frequently throughout the day. I avoid too much couching because it interferes with my sleep and tends to set me up for aches and despair. I keep a sleep routine and don’t rush out of the house in the morning, but allow myself to wake up slowly (and with delicious coffee and a great book!) Staying warm and comfortable are priorities. I don’t spend a lot of time with doctors and taking medicines or even supplements. False hope can be devastating.
Are you able to take care of yourself? if not, who is helping you?
I can care for myself, but I am married and my husband does help a lot when I am going through periodic rough times. He is a blessing and I know I am fortunate. During a relapse I can’t even fathom being on my own. My husband does the driving and will take care of dinner. He offers companionship and relief from boredom. He is very even-keeled and mellow, so he is a fairly reliable energy.
Do your family and friends treat you with respect in regard to your FM and/or CFS? Do you have what you consider to be a good support network?
I have wonderful support and several friends who are ill themselves who get how chronic illness impacts a life. I don’t know what I’d do without them.
I don’t think that most people who know me understand even slightly what I go through. Early in my illness I would try to explain, but I got such a variety of reactions. In many instances I got the vibe that the person figured I could just snap out of it if I really wanted to. I didn’t like hearing myself complain just as much as I didn’t like some of the reactions I got, so I just closed up. I did, in fact, become more socially isolated, preferring not to deal with it.
It also seemed like everyone had a suggestion for a cure and if I balked, I felt their judgments. I know what it’s like to try to help someone only to have them reject every suggestion you have. I know that it makes you wonder if they actually want to hang on to their misery. But what I know now is that we all have to find out own way in our own time. It’s been a valuable lesson and made me a better person.
Do you talk about your illness with your friends, your family, local support groups or online support groups? If so, which do you find the most helpful?
My friends are my lifeline. When I do need to talk about my health, I call one of several good friends who are also ill or a best-friend-forever who is not ill, but who is compassionate, knowledgeable about medical issues and who loves me absolutely unconditionally. In general, though, I try not to talk or focus so much on being sick. As the beloved George Harrison might say, “It’s a drag, really.”
Has FM and/or CFS affected your relationship with your romantic partner?
It has definitely changed both of our lives. It’s difficult for my husband to deal with my illness – he is always afraid I will have a severe relapse and go back to the point where I am acutely ill, like I was for the first six or so years. There are a lot of things that we don’t do that we might have otherwise – like life after dark - but I am fortunate that we both love being at home with our dogs.
Please talk about your emotions regarding FM and/or CFS. Are you angry, scared, do you feel alone?
After seventeen years, it’s only once in awhile that I entertain the severity of the impact CFS had had on my life. Earlier, I was afraid. By the time experience demonstrated the permanent nature of my CFS, I was used to it and had moved forward with a newly created life. When the reality of it’s impact surfaces, I feel grief and anger, but usually only briefly. Grief is more likely to surface in the hibernating seasons of late fall and winter.
I try not to be frightened by the big relapses, but that can be difficult when they last longer than I am used to. It’s kind of like a post-traumatic fear, since once, long ago, I got what I thought was the flu and the symptoms didn’t abate for eight years. So when I relapse hard, I have this fear that it will last for years again.
I do fear being alone. I am married and my husband picks up the slack a lot. Without that live-in help, I think I’d tend to isolate. I go through many home-bound days because of difficulty tolerating cold temperatures. Even changes in the temperature from room to room in my house can throw me off. At these times, the brief walk from the warm house to the car can set me into a relapse, so I stay indoors. This can get lonely and boring.
Tell us about your career and the impact FM and/or CFS has had on it since you completed our last questionnaire.
Well, my employer has had to make a lot of accommodations. I don’t usually have to come in early mornings or at any specific time. I can go home when I need to. Most of my 30 hours per week are done at home. I go into the office Tuesdays and Thursdays for 5-6 hours. I am totally set up to work from home and am lucky to have a job in which that is possible.
My supervisor and I went to a couple of conferences together and she had the chance to see firsthand how my health reacted to a few 8:00 – 5:00 days in a row. I feel that she is totally supportive of me.
Sometimes it’s difficult even with the accommodations. I am more isolated than I’d like to be from the work community. I don’t socialize after-hours like I did before I got ill. I am tired during the week and pretty much turn into a pumpkin at about 4:00 pm.
Have you faced financial challenges as a result of having FM and/or CFS?
Not being able to work has its economical challenges and working does as well. I think it’s a challenge to have to stay in a job because you need the income. It’s a challenge to try to segue into a new line of work because you don’t have the energy to moonlight or get special training. So it’s easy to feel stuck, which is not good for the psyche.
Are you receiving social security benefits and/or private disability benefits because of your FM and/or CFS? If so, how long did it take to qualify for these benefits?
No.
Have you taken legal action regarding your FM and/or CFS? For example, to gain social security benefits or compensation following an accident.
No.
TREATMENT
Has medical science caught up with FM and CFS?
Please provide us with your thoughts on the following statement:
"Fibromyalgia and Chronic Fatigue Syndrome are now regarded as legitimate illnesses. Most medical practitioners are well-informed on the subject and readily able to recommend a treatment program.
The above statement is not my experience at all. It’s very difficult to find a doctor that understands when you need to be treated differently than someone who does not have FMS/CFS, thereby avoiding doing harm. I often will not mention that I have CFS to a new doctor, as I find the chances are pretty good that they will write off all of my complaints as related to the CFS or write me off as a hypochondriac. I have had practitioners say to me that people with FMS are “energy vampires” (of course, they did not realize that I have it at the time they said that).
Recently, I had damaged a nerve in my leg and my primary doctor decided it was my fibromyalgia even though I insisted to her that it was not. She referred me to a rheumatologist who told me to drink tonic water. The next doctor ordered an MRI and found a slipped disk (now we were getting somewhere!), but the subsequent referral for physical therapy led to the discovery that the nerve damage had nothing to do with the ruptured disk. Through it all I had to be a strong advocate for myself in order to get the treatment I needed.
Have you researched your illness? Have you been keeping up with FM and/or CFS periodicals and the medical literature available online?
I did a lot of research during the first six years or so of my illness, then I stopped. I still maintain that when they find something that works for everyone or is true for the majority of us, it will be on the news and on every magazine cover in America, so I can’t possibly miss it. Spending too much of my time paying attention to my condition is unhealthy for me. Time to move on.
If you do keep up with medical advances, which new or forthcoming treatments for FM or CFS seem to offer the most promise? Where do you go to find your information on new treatments for FM and/or CFS?
I’m much more interested in hearing they’ve discovered the cause than about treatments that may or may not help with symptoms. I seriously question taking medications that just cause other problems and then taking other medications for those problems. I truly think I’m better off without drugs. I have prescriptions for sleep, pain and anxiety, but I use them only rarely, preferring to ride out my symptoms or use natural medicine such as acupuncture, massage or herbs.
If you have been diagnosed with CFS, what are your thoughts on the name of this illness? Does "Chronic Fatigue Syndrome" accurately describe the etiology of this illness? The term Myalgic Encephalomyelitis (ME) is commonly used in some countries and the term "Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) has also been suggested as an alternative. Do either of these terms seem to better describe CFS? Do you have another suggestion?
I don’t have much faith that a name change will ever happen – it’s been a hot topic since the early nineties. Perhaps time is better spent teaching the public and the medical professionals to respect this as a legitimate, life-altering, debilitating and yes, somewhat mysterious (for now), disease.
Do you have the same primary care provider you had when we last talked to you? If so, what about them has made you want to continue seeing them over the years? How would you describe your relationship with this person?
I do not have the same doctor and have switched doctors numerous times. It’s difficult to find someone who respects you as a person and isn’t intimidated if you have learned to be an advocate for yourself and have learned a lot about your condition on your own. I find most doctors want to over-treat me when they hear I have CFIDS and FMS. I don’t want their treatment, so I stay away.
If you have a different primary care provider, what made you make the change?
I don’t currently have a primary care provider. I have been to patronizing rheumatologists, well-meaning and over-zealous naturopaths, physicians who only understand surgery and medications, practitioners of all stripes who think they have the cure, a D.O. who claims the simple act of exercise cures FMS, a nurse practitioner who calls me “too complicated” and more. Everyone I see seems to send me off with pills, herbs or supplements and I just don’t have any faith in these things or in the people prescribing them. Call me jaded.
Has your health insurance or HMO influenced your decisions regarding your primary care?
Unfortunately, money is a consideration and so, yes, my health insurance does affect my choices. For instance, my muscles in my upper back are always very tense and I think massage would help me overall. Insurance coverage for massage means the difference between once a month and once a year.
Over the last six years the climate in managed care has changed. There are now restrictions on who can qualify for care and limits on doctors' time. Has this effected your care? If so, in what ways?
Doctors cannot possibly offer good care for people with chronic illness in a fifteen-minute office visit. Period.
Do you take medications and/or supplements for FM and/or CFS? If so, what kind do you take and do they help?
I currently take Klonopin at bedtime – just .75mg. It helps me to fall asleep, calms my restless bladder at bedtime and takes the edge off my anxiety. That’s all I take.
I have Ambien that I will take only if I have gone many nights without good quality sleep, which rarely happens unless something unusual is going on in my life.
Do you see a mental health professional for stress directly caused by your FM and/or CFS? If so, in what ways does this help you deal with your illness?
I don’t currently see anyone, but I have in the past. I think that underlying issues need to be addressed and statistics have shown that many people with FMS in particular have post-traumatic stress of some kind preceding their illness. I read about a couple of reputable studies that showed 57-58% of us have post traumatic stress compared with 9% of the general population. So I think it’s a good idea to get to the root of that when it applies. In my own experience, it is quite conceivable that chronic stress plays a role somehow.
Since we last talked to you, do you now find yourself more likely to consider alternative therapies over western medicine? What has influenced your decision here?
I have always been open to natural medicine and find more hopefulness there. I still frequently encounter insensitive, uninformed doctors and don’t have a primary care practitioner of any kind at this time because I simply can’t find anyone who can take into consideration the complicating factors of my CFS and FMS when treating me for other things.
I am totally turned off by all the medical professionals who think they have it all figured out.
Have you tried any of the following therapies to relieve your symptoms of FM and/or CFS? Acupuncture, chiropractic, osteopathy, physical therapy, yoga, movement therapy, massage, exercise, tai chi, chi kung, craniosacral therapy. Tell us about your experiences with these therapies. Did they help? What about them works best for you? What didn't help?
Although I have tried many of these therapies in the past, I haven’t found any of them to be so beneficial that I use them on an ongoing basis. Many are wonderful while I have the energy to do them. I loved my hatha and kundalini yoga classes, but when I would relapse, I would stop going. I have trouble being consistent with exercise, so I am very informal about it. Gym memberships are a waste of money because I invariably fall into a relapse and cannot go for months at a time. Appointments mean I am not resting or relaxing, and I prefer to do that with my time.
Do you practice meditation and/or guided imagery? Tell us about your experiences with these techniques.
I have trouble sticking with these. But I find meditation to be powerful in many ways. When I have time and remember to, I like to meditate daily. I don’t bother myself by requiring that I do it for a certain amount of time or complicate it in any way because then I’m less likely to do it or to enjoy it.
Have you tried Reiki? If so, in what ways has this helped you?
No.
Are there any alternative treatments we haven't mentioned here that you have found particularly helpful, or that you would really like to try?
The alternative of taking incredibly decent and loving care of yourself and getting past your grief and moving on with your life. You have to create a new normal for yourself, as opposed to trying to get the old you back. You have to find your way back to life in the world instead of getting stuck in life in your illness.
Source: Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome © 2006 by Mari Skelly and Helen Walker. To order, please call (800) 266-5592, fax (510) 865-4295, visit www.hunterhouse.com, or write to Hunter House Publishers, PO Box 2914, Alameda, CA 94501.
