Hobbies & Activities with FMS/CFIDS, or An Ode to Hands

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.

Back on the Horse

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.

Until then, keep moving forward!

Fibromyalgia & Exercise

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.

Happy New Year, Fibro Friends!

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.

Setting Goals for the New Year with Fibromyalgia & Chronic Fatigue Syndrome

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?

Tools for Getting Organized for 2013

With 2013 just around the corner, a lot of people are looking to get organized. I have found that this is especially important for people with fibromyalgia and chronic fatigue syndrome. When I was first diagnosed, I spent a lot of time Googling how to manage my condition and keep my life smoothly moving along. Concerning lifestyle modifications, the one thing that kept coming up was to get - and stay - organized.

Why is being organized so important for people with FMS and related conditions? There are many reasons. First, as patients we need to recognize, accept and work within our limitations. Fibromyalgia is an "energy crisis" - our bodies are exerting more energy on natural, normal and every day processes than we can produce.  Using lists, calendars and apps can help us realistically manage and stay on top of what we need and want to do and what we can realistically do on any given day.

Another reason is the infamous "fibro fog" and the fatigue which characterized our condition (read more about fibro fog and fibromyalgia's cognitive processing issues here, here and here). How often have we forgotten to pick up an item at the grocery store, or even paid a bill on time? For me, this has happened more often than I would like to admit! Seeing a list, or having a pop-up on my laptop screen or iPhone is an instant visual reminder of what we need to do.

Finally, being organized makes life easier, more enjoyable and gives us more time to enjoy ourselves. How great is the feeling of knowing you accomplished the tasks you could on any given day? Remember, our abilities are different from day-to-day, depending on what symptoms we are/are not dealing with. However, setting realistic goals, sticking to a schedule and completing tasks we are able to can really give us a great sense of pride, accomplishment and, best of all - time to relax.

Understanding that being organized makes life better for those of us dealing with fibromyalgia and chronic fatigue syndrome is the first step toward improving our lives. The next step is finding the right tools to help us.

I personally have several methods of staying organized which I use inside of my home:

- White Boards: I have a white board I bought at Target. It hangs in my dining room, which I pass through every morning on my way to the kitchen to fix myself my morning coffee. Seeing it first-thing, and anytime I pass it, reminds me of what important tasks I need to complete that day. Each night before I go to bed (remember that sleep hygiene  is so important), I erase the tasks I accomplished and write down what I need to do the next day. This not only serves as a hard-to-ignore reminder, but helps me not to ruminate on what I need to do before bed.

- Dry-Erase Calendars: I keep a dry-erase calendar on my refrigerator, where I write the due dates for bills, assignments for school, important events and weekly tasks. I use a variety of colored dry-erase markers and color code the tasks.

- "Go-To" Stations: I have a desk in my living room, on top of which I keep a basket.This is my "go-to" station when I head out the door and when I come home. There I keep my keys, my wallet and anything I might need when I go out, like lip balm, tissue packs and train tickets.

- Pendaflex PileSmart: I love the PileSmart for organizing paperwork, bills and other assorted mail before I file it. It is color coded, with separate tabs and I use the same colors as the dry-erase markers on my dry-erase calendar.

When I am outside of my home, I have a few methods which help me keep on top of things:

- Assignment Book/Planner: When I was in middle school, the school gave us assignment books to write  our homework in. It took me a few years to see what a handy tool I had at my disposal. I have an assignment book from Staples that I use to write my school work, to-do lists, grocery lists, as well as plan meals. It is a more detailed, portable version of my dry erase calendar.

- Google Calendar: I sync my Google calendar with my iPhone and use pop-up reminders. As long as I have my phone with me, it serves as a handy reminder. Of course, it is available for the Andriod platform as well.


- Apps: I love apps. I really, really love apps. Here are a few I  often use and highly recommend:

• Astrid Task Manager: Astrid is a to-do list organizer that is available online, for Google Chrome, Andriod and the iPhone.

• Agenda: Agenda is a very attractive yet easy to use app, and best of all I can sync it with multiple calendars, including my Google Calendar.

• iPeriod: This one's for the girls. This app is very handy, especially considering how FMS can wreak havoc on the menstrual cycle.

• Pocket Pharmacist: Pocket Pharmacist helps me to organize my medications, research their uses and potential side-effects, keep track of when I last took them, in addition to my doctors' and my pharmacy's phone numbers.

Hopefully, you will find these methods of organization as helpful as I do. Do keep in mind, however, that it is most important that you find what works best for you!

If you are interested in becoming more organized for the upcoming year, here are some online resources I have found to be very helpful:

A Bowl Full of Lemons - A Bowl Full of Lemons is an attractive, fun blog with hundreds of organizing tips, and best of all, they are realistic ideas that can be easily implemented. I highly recommend this blog.

Creative Organizing - Another very helpful blog, with lots of lists to help you get started. A Year of Organizing Checklists is fantastic.

Innovativley Organized - Even more checklists to help you organize everything from your work life to planning a vacation.

My Fridge Food - My Fridge Food helps you keep track of what you have on hand in your pantry, and helps you plan meals using what you already have. It is a great way to stay organized and plan meals.

How I Use Routine to Successfully Manage Fibromyaglia

Fibro Tips for Living with Fibromyalgia

I hope that these resources help you as much as they have helped me.

Good luck in your quest to become organized and I wish you a happy, healthy new year!