05.11.12 Wellness

Living with Fibromyalgia: Reclaiming Life

Living with Fibromyalgia: Reclaiming Life

BY Kelsey Meyer

About a year and a half ago I was diagnosed with fibromyalgia. After facing two previous years of a potentially fatal illness, my body’s immune system was in complete shambles. Even though I had survived, I was left with the life-long effects of the illness; and those effects had a name: fibromyalgia.

Looking upon my life from the outside, one would assume that I am a young and healthy twenty-two year old female, but often what we assume about one’s life is far from the truth. Fibromyalgia is a painful disease, with no specific cure. The disease affects the musculatory system of a person’s body and decreases one’s threshold for pain; thus, leaving a person with seemingly unexplained pain radiating throughout the body.

Upon learning that there is no cure for fibromyalgia or the pain I was experiencing I became increasingly disheartened. The type of pain I was facing was completely debilitating. I spent almost a year in bed, unable to get up or go about daily activities and I couldn’t image living the rest of my life in that same state. Because there was no physical evidence of the pain I was feeling, no one understood what I was going through. I lost many friends and felt completely alone. How was I going to live my life with this disease? How was I going to be able to take care of myself, to pay my bills, to have a social life? I began worrying that I would never be able to leave my house and that I would never be able to move forward with my life – have a career, fall in love, get married, or have children. A big part of me wanted to give up, wanted to resign myself to the fact that I would most likely be spending the rest of my life in bed, watching TV. A part of me didn’t want to get my hopes up for a bright future, because I was afraid I would never be able to have it. But I decided, I wasn’t going to let that belief rule my life. I was going to beat fibromyalgia, or at least learn to live a fulfilling life coping with it.

I made the decision to find new doctors, to learn everything I could about fibromyalgia and about alternative treatments for the disease. The more I started learning about fibromyalgia, the more I found out about how common it is in women. Women have been suffering from fibromyalgia for years, but Western societies and medical journals are just starting to recognize it as a legitimate condition. I’m sure that every woman has gone, or will go, to the doctor complaining about being sore all over and having no energy. But the doctor turns them away, saying that they are just over-worked or stressed and need to get more sleep. However, muscle pain, sore tender points and fatigue (often extreme) are all symptoms of fibromyalgia. In this recent recognition of the disease, media, women’s journals, and health magazines are starting to publish material relating to the subject and drawing attention to the fact that Western medicine needs to support more research efforts regarding treatments or a cure. Just recently Dr. Oz dedicated part of his daytime talk show to informing American’s about the ‘realness’ of Fibromyalgia.

Now that the media is bringing attention to this painful and debilitating disease, more women are standing up and saying, “Yes! I have fibromyalgia too!” I know how I felt when I started realizing that other women were suffering too. I thought, “I can do this, I’m not alone, there are other women out there who understand what I feel!” Joining in the discussion about fibromyalgia and attempting to connect with others who have the disease, is one of the largest benefits of the healing process. Once I realized that I was not alone, I had a stronger belief in myself and in my efforts to beat the disease. I knew that part of my healing would center around raising awareness of fibromyalgia and helping others join into a public discussion about what treatments they have tried, and which ones they have found to be the most helpful in relieving pain. In order to start the discussion, here is my story, and my advice:

After I started reading literature about the disease and seeing new doctors, I was able to open myself up to trying new ideas for treatment options. Finding a doctor who truly believes in you and wants to help you in any way possible is the most important step towards recovery. When searching for a good doctor, I like to think of it as a sort of ‘dating’ game. I can’t even tell you how many doctors, or ‘bad dates’, I had to go on before I found the right one. It took me almost three years to find a doctor who was willing and excited to help me recover. She provided me with many different outlets of treatment I could try and let me tell you; I’ve tried them all!

The most basic form of treatment is through medication. I have found that pain-regulating medication was the first major step in recovery for me. All of a sudden I was in less pain, and I was able to get out more! Part of relieving the pain of fibromyalgia is fighting against it, getting out for walks or doing yoga and trying to activate your muscles to the extent you can handle. Finding the right medication allowed me to be able to take that next step toward recovery and actually use my body and exercise my muscles.

Now, when I was in high school I was a major workout-aholic. I was in the gym lifting weights three times a week as well as participating in multiple athletic teams. So, learning how to slow down my workout routine and listen to my body was a new experience for me. I still don’t consider what I do now as ‘working out’. If I have time (and energy) to exercise my body, the most I can tolerate is light yoga, swimming, or bike riding. But I find that my body and my muscles, still thank me the same. Learning how to build a workout plan for you body is difficult with fibromyalgia, because the level of pain and energy often fluctuates throughout the day or from day-to-day. I used to be so hard on myself; I thought that I would be back in the gym lifting weights by now. But I have found that best thing to remember, is to not be hard on yourself. Many people with fibromyalgia get very angry and upset when they are facing a set back in their road to recovery, but during those times I always try to remember how far I have come and how far I will continue to go in the future.

Medication and light exercise may be the two founding blocks on the road to recovery, but diet is just as important. The food we eat and the nutrition we bring into our bodies helps (or harms) the way our body functions. In order to increase my level of energy, I have found that eating a gluten-free diet has helped immensely. I feel lighter and more energetic and also feel less pain. Of course, sometimes I cheat and eat pizza or a burger (breads and carbs are my weakness!) but it’s important to remember that hard work always deserves a little reward and not to get sidetracked from your ultimate goal.

When discussing alternative forms of treatment, I have found that acupuncture, massage and counseling have helped me a great deal. I believe that finding a good counselor or therapist is extremely important in learning how to deal with fibromyalgia on an emotional level. Just like with my doctors, I viewed potential counselors as ‘dates’. It took me a couple of bad dates before I found the right match for me and I couldn’t be happier. Having emotional support as well as an emotional outlet is crucial, because keeping emotional pain bottled up inside you will just eventually cause that emotional pain to manifest into physical pain– often leading to a worse degree of fibromyalgia suffering. In order to deal with the emotional stress that goes along with having fibromyalgia, my therapist has often suggested meditation. Of course, I often forget to meditate or when I do, I get so relaxed that I fall asleep (woops!). But I think that the important point to grasp is that you must learn to relax your mind and your body in order to cope with the daily stress related to this disease.

Acupuncture and massage therapy are the more expensive forms of alternative treatment. Both forms of treatment attack the fibromyalgia from two areas: direct contact with the body and inducing a form of relaxation and emotional release. I am currently undergoing a six-month acupuncture treatment for my fibromyalgia and I have had great results. I feel much more relaxed and calm after my treatments, and I can feel a significant level of decrease in my pain. When it comes to massage treatment, I only participate once every couple of months. Massage therapy has seemed to be less helpful in sustaining its positive effects and it can become very costly. Of course, if I were rich I would get a massage everyday, but I don’t know a girl who wouldn’t!

It has been a little over a year since I decided to attack my fibromyalgia head-on and I can’t believe I have come as far as I have! A year ago today, I would have only been able to go out for about two or three hours before feeling the debilitating pain and fatigue – but now I am enrolled in three summer classes and starting to rebuild a social life! I’m nowhere near where I want to be. I still can’t stay out late and I still have to manage the level of my pain daily – but I don’t feel as hopeless as I once did. I tell myself everyday not to give up, to keep moving forward and to keep positive. I believe that one day I will be able to live the life I’ve always wanted and to have the things I was afraid I would never have (a career, a family, etc. etc.) If I have learned anything from this experience it is the importance of reaching out toward others who might have, or who do have the disease. If you think you have fibromyalgia, or you have fibromyalgia, you are NOT alone. Many women are facing this disease. It is real and there are ways to cope with it – ways to make your life better. I hope that my story and my experience with this illness will help others to find a treatment process that works for them.

Always remember: we may have to live with fibromyalgia, but we don’t have to live alone.

If you are interested in viewing the segments from the Dr. OZ show, you can go to his website and search for ‘Fibromyalgia: A Real Illness’ under the section for ‘Videos & More’ and read more from Kelsey at fibro-files.tumblr.com.

Featured image by Tea Shafie on Flickr

Kelsey Meyer is a college student in her mid-twenties living in Middle America. Growing up she was an inquisitive child and this nature has served to be an ever- present source of inspiration and motivation to question the world around her. Some of her ultimate goals in life are to raise awareness of domestic abuse as well as sexual abuse and women’s issues.

Comments

  • I could have written this. I, too, am a young fibro sufferer. I’ve also lost the majority of my friends because they didn’t understand why I couldn’t go out with them. If it weren’t for my husband’s support and my dog just making me feel better emotionally, I’d be a complete wreck!

  • I had Epstein Barr for many years and was totally debilitated so understand your journey !

  • First symptoms of FM came after falling off a horse in Australia 03/1993 where I fractured my skull against my left shoulder. Yet could get by mostly until a car accident in the US in 2000. Back then half the docs said it was all in my head, the other half agreed their was evidence that FM was real and I had it. Still you end up half mad, confused, angry and tired, oh so very tired. Who is this chick that’s too tired and always bitchy? Who was I? You don’t recognise yourself anymore when you look in the mirror. 12yrs later, FM was just the 1st sign of problems to come – like herniated disks in neck, neuropathic pain down entire left side of my body. Still…I don’t “look” broken to others, unless I tell them and telling anyone was very hard to do. Maybe because that meant admitting it to myself? Admitting there were new limitations that I had to learn to work around. These days I am no longer silent. Very open and very outspoken about it. Had to grieve the loss of who I was, and learned to love me, again. Today I fight for everyone’s right for fair and proper treatment. Remember, MS not that long ago was called “the hysterical women’s disease” yet today they know those women were not hysterical, they were broken. Once you know what it is you are dealing with, you are able to work towards making life a little better, for everyone.

  • Nick

    its great to see im not alone only uncomfortable aspect im a teen in my senior year of high school, and oh yeah im a guy i still to this day have not hear of a young male fibromyalgia patient which makes me feel so odd

    • Fibromyalgia In Men is seen a lot less, but you are not alone! Sorry your having to deal with this, stay strong!

  • Dee

    Im reading a good book ” cure your fibromyalgia in 5 weeks” Its an emotional thing. Trauma gets trapped in your body because you cant handle the intensity of whatever it is you went through so your mind stuffs it. But even though emotions are unprocessed and stuffed, your brain churns out stress chemicals to remind you that there are emotions that need your attention and tending to. All these chemicals cause overstimulation on your nervous system so you have overactive nerves,thus pain,numbness,ect. Read the book and heal your life. Fibromyalgia is not a disease. Its not all in your head either. Its the minds way of getting your attention to suppressed emotional trauma. Im gradually getting better. Was diagnosed 9 years ago and Im not getting worse anymore but improving.

  • Amy

    be nice to find a doctor in Terre Haute. No one believes in FM for a 38 year old woman. Been to them all. Leonardo, My PCP, oh, and a new on Henry Davis that stood me up for 1 hour 40 minutes waiting to see him so I left. No one cares. I have hip burstites and have to have shots, SIJ dysfuction, neck spurs, 2 bulging disks, lower DDD, and FM. suffer from RLS at night, sometimes sleep and sometimes don’t, have CDH and migraines. Today marks day 4 for a headache. I have numbness in hands from CTS. But lets check out my med list…….nothing. Only daily headach, and vertigo medicine. Yes, I suffer from vertigo real bad. I wonder whats truly wrong with me sometimes.

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