As a fibromyalgia patient, what are your expectations when you arrive for your doctor appointments? Do you arrive prepared to work with your doctor on how best to manage the troubling symptoms of fibromyalgia, or do you arrive hopeful that he/she will have some treatment, some answer that will once and for all end your suffering?
One of the first things I tell new members of FibroHaven support group – above everything – we need to learn to be our own best health advocates. Fibromyalgia is a condition with no known cure. There is not, and likely never will be, a single approach to treat and manage the condition. Most doctors do their best within their limited resources in identifying and trying to treat each of the separate symptoms of the condition, but few are masters of treating the whole.
In their desire to bring you relief, you may leave with one prescription for pain, another for sleep, and still another for IBS. And when those fail to bring the desired results, or when the side effects are worse than the condition they are intended to manage, you start all over with a new prescription, and new hope that this time it will be the answer. And the cycle continues. Even for those whose symptoms are improved, and their days are made more manageable, the condition remains.
So our anger and frustration builds. We see doctor after doctor hoping this one can help – that one will know, and when they can’t, and when they don’t, we blame. We blame our doctors for not understanding, and we blame the pills for not working. We dwell in a state of feeling hopeless and misunderstood. We lose faith that it can ever get better. We become defeated, and in doing so our symptoms grow in strength and severity because we have relinquished our control. Fibromyalgia wins. We lose.
Can you see how depleting this continuous cycle of hope and disappointment can be?
It is this disappointment and incredible letdown that I believe can be alleviated if we reevaluate our expectations of the fibromyalgia doctor-patient relationship. Despite all efforts, our doctors are limited in the relief they can provide. If we understand this going in, and set reasonable expectations for what we hope to achieve under their care, we free ourselves to possibility rather than despair.
First, we must change our expectations of what a doctor can do.
A good doctor will partner with you and guide you to make the changes necessary to improve, but even the most fibromyalgia literate doctor cannot make this go away. Know this going in and you are much more likely to have a positive experience and partnership with the right doctor.
I did not start healing until I took control of my health out of a doctors hands. Once I understood they do their best, but their best is limited when it comes to fibromyalgia, I began to make the changes I needed to begin healing. Because I chose to manage my symptoms without the use of pharmaceuticals, my need and expectations of my doctor were reduce considerably.
I incorporated alternative medicine, finding tremendous relief from a holistic chiropractor. His treatment was unconventional in that he rarely adjusted me, but used laser therapy and also addressed my nutrition, introducing me to a gluten-free diet. He also worked to eliminate several infections I had including heavy metal toxicity.
Once my chiropractor worked with me to consider how nutrition played a role in how I was feeling (something, remarkably, I had never considered), I began to examine all areas of my life to see what changes I could make to begin living well with fibromyalgia.
I incorporated yoga to get moving again. I began meditating to help me find balance and peace amidst all the chaos of chronic illness. I became more active with my support group to connect with people who validate my feelings and experiences. And I began to improve. Slowly, gradually, I improved. But more beneficial than any physical improvement was my emotional improvement. I found hope.
By making these changes I took control of my health. A loss of control is something we all struggle with. When we give that control to our doctors, and they fail to make acceptable improvement in our lives, where does that control go? Do we keep giving it to others who, despite their intentions, are limited in their ability to help, or do we take it back. I say take it back.
Walk into your doctors office and let them know, I know you cannot cure me, but let’s see what we can accomplish together to make me better. Better than anyone, you can – and should – determine what is best for you.
From the time I first read your blog, you inspired me. You’ve helped me make the baby steps I’ve taken to take care of myself. I am less dependant on doctors and their opinions and more willing to take responsiblity for my health. Thank you just doesn’t seem like enough.
Kathy, thank you for encouraging me to write this post! I didn’t think I had anything relevant to contribute on the subject, but you helped me see that I do. You have given me a tremendous gift and reinforced that what I say really matters. Every blogger should be so lucky to have a one time commenter become a new friend. Thank you!
P.S. Congratulations on all the great work you are doing with the blog carnival. It is a great platform to help build community, share information , and spread awareness. Bravo!
I don’t have fibro but do have a blood disorder called Sickle Cell Anemia which results in chronic pain throughout the body! While I still see my hematologist on a regular basis I must agree with Dannette that we must take a high level of responsibility for how we manage our illness.
For me, I find the doctors are doing the best with what they are giving by means of education and if you do some research you will find that the pharmaceutical industry fund many of the best medical schools & medical research. However these same companies are mostly looking at the best interest of there stockholders. So in the end, it’s still about dollars for them, not our health. So while I believe the doctors are doing their best, their perspective comes from the view point of the pharam companies.
I have been studying alternative healing myself and find meditation & yoga useful. Nutrition plays a vital role in maintain a high quality of life also. I honestly believe with proper nutrition all dis-eases can be eradicated however with the grocery stores not selling food and more people working in the agricultural offices than actual farmers it make it difficult for us to obtain live, healthy foods.
Yes, unfortunately Rasheed, health and wellness is big business. But if we all learn to be progressive about our own wellness, especially in regards to nutrition, we can at least diminish the control they have over us personally. If enough people do that, well there could be big changes in the health industry.
Thanks for commenting and sharing your prospective. My best to you!
Ari @ The Frugally Rich Life says
This is a good article. I’ve been looking into doing more natural medicine with my fibromyalgia also…I’ve already gone GF, dairy-free, refined sugar-free, and still suffer a lot. What things helped you? I also see a chiropractor weekly. I am trying to start exercising too.
Hi Ari. First I have to say I took a look at your blog and now I am totally craving peanut butter cookies! Yum!
Truly, the one thing that has helped me the most is yoga. At one point I would not have been able to answer so definitively, because I began doing yoga and cut out gluten around the same time. I was not sure which was helping me the most. Then I went back to work and my yoga practice suffered. I went from 2-3 times a week to 1-3 times a month. My body let me know pretty loud and clear that this was a mistake.
I have since cut back on work (which is why your frugally rich concept really appeals to me!) and am back up to yoga twice a week. And I am feeling much better. My goal is to eventually get to 3-4 times a week.
I admire you greatly for going dairy and sugar-free as well. I have tried myself several times and failed. I am going to try again! Maybe your recipes will inspire me.
Theresa W. says
Way to go Dannette! Your blog is a favorite on
http://fibroblog.org/ from the NFA National Fibromyalgia Association New FibroBlog post: Some of our favorite blogs and posts.
The fibromyalgia community is fortunate to have many talented writers who, despite everyday challenges of living with chronic pain and other debilitating symptoms of fibromyalgia, continue to raise awareness of this very real condition by sharing their personal and poignant stories on their blogs.
Your writing is so inspiring to us all!
Theresa you are simply awesome!!! I am so happy we are on this journey together. Thank you so much for your friendship and support.
J Musser says
It doesn’t have to be that way! I have had fibro for 11 years. And yes, finding adequate treatment was very frustrating at first. I have now found two MDs and a PharmD whose work together has rendered me virtually symptom-free. Check out the new publication or website by Dr John Lowe, The Metabolic Treatment of Fibromyalgia. It is fabulous and while it is indepth biochemistry (your doctor will understand or at least should!) it validates you…it validated me. It has given my caregivers new and well researched treatment options as well as …ta da!!! a diagnostic protocol to follow and then continue monitoring. We are not the only ones in fibro-fog…many physicians are too. An excellent resource is Marla Alhgrimm, PharmD & CEO of Women’s Health America. jwm
Thanks for sharing your story and insight J. It sounds well worth looking into. Kudos to you for doing what is necessary to foster a knowledgeable and supportive medical team.
Dr. Mike Swierczynski says
As a chiropractor myself, I would like to applaud your chiro for addressing different “areas” of your life that can easily contribute to your fibro symptoms. I would also address your stress levels, sleep and current medications. These can also contribute to your overall fibro symptoms.
Dr. Mike Swierczynski
Like you I chose to treat my FM, for the most part, non-pharmaceutically. I may have to incorporate yoga, although I currently try to attend a specialty FM/arthritis exercise class that runs 2 x a week in my area. What type of yoga do you do?
Kathy, I do mostly gentle and restorative yoga. I made the mistake once of believing beginning yoga meant gentle yoga. It does not! The gentle and restorative classes are really suitable for people with limitations and health concerns. Chair yoga is another option and is becoming more and more popular. The great thing about these classes is that the instructors really guide you and allow you to honor your limits. And your limits can change from day to day.
How wonderful that you have found a specialty class in your area. I would love to know what types of exercise are involved.
Sandra Lee says
This is a very important article. You are so right – doctors are usually very limited in what they can offer patients with fibromyalgia and other pain conditions. We can accomplish quite a bit more by taking responsibility for our health, looking at our total load, and chipping away at it one piece at a time.
I really admire how you have devoted yourself to yoga. I’m glad it brings such benefit to you. I know both Qigong and stretching help me so much, but it’s always been a challenge for me to stay with it as regularly as I would like. Being gluten free has also helped me considerably.
Thanks for telling it like it is!
It’s interesting you bring this up…I was just reading a book called “The Culture of Pain” by David Morris, which talks extensively about the responsibility we’ve placed in the hands of doctors. Not only do we hold them responsible for healing our PHYSICAL pain, we expect them to solve the mysteries of our MENTAL pain. Basically he breaks pain down into a dichotomy of where our pain comes from, why it frustrates us, and what we can feasibly expect doctors to do about it.
I think we’re seeing the medical industry being so dependent on prescription medication because we have placed such a large responsibility in their hands…solve all facets of our pain. Doctors aren’t miracle workers, I agree, I don’t think you can go into an office expecting to be cured, especially when we understand and realize how comprehensive our pain is.
The Culture of Pain sounds like a very good read. Thanks for sharing it here Paul. It is understandable that we look to the “experts” for our answers, but in the case of fibromyalgia, that usually means the best person we can look to is ourselves.
dollar - South Africa says
Thank you for all for sharing your experiences. At first i was saying i was alone but when i came across with this site i knew i had family members who knows what i’m going through.
When i had pains for 24/7 i did not understand, i was stress all the time but now i enjoy my life to the fullest. the are many things that i cannot do but i excell to the one’s i can do. I’m still working by grace and hope to do it till the end.