One twenty-five year old woman with fibromyalgia syndrome (FMS), chronic fatigue & immune deficiency disorder (CFIDS) & her quest to find knowledge, harmony & the world's best pillow and strongest cup of coffee.
I am awaiting the results of my nutritional panel, but my last appointment with my internist presented me with mixed results. I am otherwise-healthy (Thank God), but as expected I tested positive for Epstein-Barr Virus and deficient in vitamin D. After my nutritional panel, I intend to get a referral to a good neurologist, to ensure that I am exploring all avenues of potential treatment. I like to be very proactive about my health - especially since I am young & believe that an ounce of prevention is worth a pound of cure!
This is also the last weekend before my spring semester. I am officially a junior in college, woo-hoo! To enjoy myself this last weekend of freedom, I have decided to indulge in a few of my favorite hobbies.
Just when you think that you are moving along, chronic fatigue syndrome comes around and knocks you off your horse!
No matter how organized I am, or how much I am on top of things, fibromyalgia and chronic fatigue immunodeficiency syndrome will always be there to give me a large reality check. But, that is alright, because I am learning to live with and accept the limitations of my body.
Tomorrow I have my second appointment with my integrative medicine specialist and internist. I was very pleased with my first appointment, as she took over 2 hours to examine me and discuss my symptoms. Tomorrow we are going to discuss the results of yet another complete blood panel, as well as have several nutritional analysis tests. I am looking forward to the results, whatever they are. I am hoping I can get a referral to a good rheumatologist and perhaps a neurologist as well (although I work in a neurosurgery office, I would not be comfortable being examined by my own bosses).
My doctor has recommended several supplements, in addition to augmenting my diet. I will also be finding out if trying gluten-free would be beneficial. I do know a few arthritis patients who have benefited from going gluten-free, but arthritis and fibromyalgia are two completely different chronic pain conditions.
In honor of the newfound knowledge I will be uncovering about my own nutritional status, expect a post about nutrition, and a later post about supplements (and what works for me), on deck this week or next.
Whew, the last week has been exhausting! On Wednesday, I started a new job. I am very happy to be working again, but I am glad I had a few months off. I forgot how hard commuting can be! Thankfully, I am able to work part-time, and have days off in-between until I am adjusted to working again.
I celebrated my 25th birthday on Sunday. Of course, any weekend would not be complete for me, without grocery shopping and housecleaning, both of which wore me out.
Although I have been trying (and so far, succeeding) to manage my low energy levels, I still need to make time to exercise. As we all know, exercise is essential to wellness. It can even help to reduce the level of pain we experience.
It is important to remember that we all need to find the type of exercise which works best for us, and always check with our health care providers to ensure that we are exercising safely. Therefore, the definition of the "right" type of exercise differs for each one of us.
What Types of Exercise Work for Me
I try to squeeze in fitness wherever I can. Often, this means getting off one train stop earlier to walk three blocks to work instead of one, taking the stairs instead of the elevator and getting up every hour to stretch when I am working at my desk (and not out running office errands). I admit I find it difficult to stick to a regular fitness regime, but it is something that I am working toward for 2013.
When I can, I like to do a regular yoga routine, as well as other stretches meant to loosen up my hip muscles. Yoga helps me to relax, stretch away many of of muscular aches, and keeps me flexible. If you are cleared by your physician, yoga is an excellent choice for people with fibromyalgia and CFIDS.
Here is a CNN article from 2010 which states that yoga eases pain from fibromyalgia. The National Fibromyalgia Association also has an article about the benefits of adaptive yoga.
This video demonstrates a hip stretch I like to do to help loosen up my hips, which cause me a lot of agony if I don't stretch regularly.
Before I was diagnosed with FMS/CFIDS, I was an avid fitness-lover. I had even began to run. Although I do find it difficult to stick with it, I like to run whenever possible. It helps me to blow off steam when I feel anxious or frustrated. Again, check with your physician to see if running is right for you. If it is, here is an article from LiveStrong about fibromyalgia and running.
I am fortunate that I have access to a pool in the summer months. It is by far my favorite form of exercise. I can swim laps or simply tread water, or I can walk the pool. I always feel great after swimming, and my orthopedic specialist as well as my physical therapist have recommended I continue swimming. If you have access to a pool, or a gym with a pool, you may find swimming to be a great low-impact fitness routine for you. If your doctor recommends it, here is another article from LiveStrong about swimming as a form of exercise for FMS patients: Fibromyalgia & Swimming.
There are many excellent forms of exercise available for fibromyalgia and chronic fatigue patients. The key is to make sure it is alright with your physician, does not cause you undue pain or discomfort, and fits into your schedule. It may be as simple as taking the stairs, or you may establish a routine at home or at a gym. Whatever you choose, it is a fact that exercise is one of the best medicines for fibromyalgia.
For more information on fibromyalgia and exercise, check out this LiveStrong article.
With my FMS, CFIDS, and my anxiety, I found my symptoms to be particularly noticeable (or, rather, impossible to ignore) the week after Christmas. With all of the preparations such as cleaning and shopping and cooking, I found myself completely devoid of energy by December 26th. I had to make up all of the energy I had expended, and then some. Add to all of that social obligations, and by the 31st, I was in no shape to be celebrating New Years Eve as much of the world does. I needed to listen to my body and rest.
I made the decision to stay in and celebrate my way. I put on my most comfortable clothes, dimmed the lights, opened a bottle of red wine, and enjoyed it with some of the leftover holiday nibblers I had in my pantry. By 9:00, I was asleep on my sofa. However, I did wake up at 11:59, in time to watch the ball drop! I went into my bedroom, crawled under my quilt and slept straight through to 10:00 am, with minimal interruption. My body, my mind and my soul needed that rest.
Today is the start of a new year, and hopefully many good, healthy and spiritually-fulfilling things to come. Of course, there will also be the challenges, perhaps even some new, that we as FMS/CFIDS patients face. I have not yet assembled a list of resolutions, although I rarely do. Instead, I try to set realistic goals for myself.
In the spirit of setting realistic goals, I have found that Adrian Dellwo at About.com has written an incredibly helpful guide on goal setting for patients with FMS and CFIDS, which I highly recommend.
Once you have your goals in mind, and perhaps even conquered your brain fog and compiled a plan to get yourself started, take some time to inspire yourself, and revel in the fact that you are an incredible person who has made it through another year, living with the effects of Fibromyalgia and/or Chronic Fatigue Immune Dysfunction Disorder.
Even though we may have never met, writing to you now, I would like to say that you inspire me. My journey is just beginning, and knowing that there are brave people struggling every day with these illnesses, just like me, fills my heart with joy knowing that they are succeeding and that I can, and will, too. As a small token of appreciation, and to help you stay motivated for all of the wonderful things the new year will bring, both large and small, I would like to share with you some of the things which inspire me.
Lea Salonga singing, "I Dreamed a Dream" from "Les Miserables" 25th anniversary concert. A lot of people view this song as very sad, but I personally find it to be very hopeful and uplifting.
Peter Gabriel with Kate Bush, "Don't Give Up", from the album "So".
Finally, the song "Beautiful", by Christina Aguilera. This song has helped me in so many ways since it was released. I always go back to it when I need an emotional boost.
I hope that these serve to inspire and motivate you as much as they do me.
I would like to know, what motivates and inspires you?
