Monday, May 23, 2011

This Is Just My Life

Michael Corleone said, “Just when I thought I was out, they pull me back in.” Boy, do I know how he feels. Of course, he was talking about the mob while I'm thinking of a different type of crime family – The Chronic Illness Mafia.

Last Thursday marked day three in bed. I had zero energy. I could barely keep my eyes open and any activity, be it getting a glass of water or letting the dogs out to do their business, zapped me of my reserves. I was exhausted beyond the point of exhaustion. My body felt heavy, especially my legs. So heavy, I checked the foot of my bed to make sure I wasn't sharing it with a horse's head.

Earlier in the week, I hardly felt fatigued at all. I ran errands in the morning, prepared dinner and even went for a nice walk in the evening along the waterfront. I felt good. I paced my activities. I didn't overdo it. I continue to faithfully take all my medications and supplements, exercise ~ I do everything I am told to do. So, why is it that every time I start to feel better, it just pulls me back in?

I'm beginning to wonder if I'm not only fighting Fibromyalgia and Lyme Disease, but also Chronic Fatigue Syndrome. Fibro and CFS are virtually identical in symptoms, the only difference being the absence of tender points throughout ones body. So, it remains a possibility. It's also been speculated that Lyme Disease could be the “catastrophic event” that causes Fibromyalgia or the infection that lingers causing CFS. Maybe I'm on the wrong track entirely. Maybe my problem is that I am spending too much energy “fighting” and not concentrating enough on healing? Or maybe I'm expecting too much too soon. I'm only on week three of a four week doxycycline protocol to treat Lyme Disease.

A friend of mine suggested I see a Naturopath because they can further investigate where the energy loss is coming from ~ essentially look at all things more closely that an MD doesn't look at and treat it homeopathically. For instance, is my body making enough cortisol? Is my thyroid low? Do I have a hormonal imbalance? They even look at neurotransmitter levels and vitamins in the body. I'm hoping to find a really good Naturopath, one who works under the umbrella of a doctor's office so my insurance will cover the visits, once I'm finished with the antibiotics.

I'm also going to accept the fact this is just my life. I am chronically ill. I am tired of fighting. Its time to look inward and start healing. As Zen teacher, Joko Beck, said: “Our life is always all right. There's nothing wrong with it. Even if we have horrendous problems, it's just our life.” I may not be able to work outside of the home again or socialize a lot, but I have my family and close friends. I have this life ~ this one life ~ so try as you might, I will make the best of it and you will not pull me back in …

Friday, May 13, 2011

Repost: Why Bother Spreading Fibromyalgia Awareness?

During the maintenance process yesterday, Blogger ate my post! Regrettably, I couldn't retrieve it nor upload the repost until today.

Hello Friends.

Today is Fibromyalgia Awareness Day and I wanted to write something meaningful and encouraging for all those who suffer from this debilitating illness as well as informative and educational for those who have family members or friends affected by it. I have all these ideas about spreading awareness from sharing articles to personal experiences but it all seems futile. I mean, why bother? How do I spread awareness effectively when so many in the medical community continue to treat us like second class citizens or worse criminals on trial. Any progress we make as individuals suffering from fibromyalgia will be negated so long as physicians do not recognize the severity of this illness.

My primary care physician referred me to a neurologist for myoclonic jerks. The consultation took place last Tuesday afternoon. Had I known what I was going to encounter during the appointment, I would have cancelled it rather than endure the abuse I was subjected to. I left feeling unworthy and devalued and was at the point where I NEVER wanted to receive treatment by a physician again. I also wanted to quit taking all of my medications. All of them. Of course, now that the dust has settled, I realize how unrealistic my emotional reaction was. Eventually I will have to see another doctor and obviously discontinuing medications to manage my symptoms is not an option I can afford.

Between my fits of anger, disappointment and resentment towards certain members of the medical community yesterday, I stumbled upon the following presentation by Dr. Sean Mackey, assistant professor of anesthesia at the Standford University Medical Center. In his presentation, he discusses the current understanding of fibromyalgia, its pathology, diagnosis and treatment. After watching it, my hope and belief in the medical community was renewed. I ask you to please take the time to watch it as well and to pass it along in support of Fibromyalgia Awareness.
I also came across some eye-opening statistics. Do you know that between 3-6 million Americans suffer from fibromyalgia, yet the NIH only funds $9 million in research compared to 3,630 Americans suffering from West Nile Virus with $46 million in allocated research funds? Research Funding Comparison

To answer my own question, why bother spreading awareness when it seems futile? I think the answer is clear. We need to advocate for our own health to ensure - scratch that, demand proper treatment by the medical community. I cannot emphasize the importance of finding a doctor who listens and respects you and hasn't forgotten the Hippocratic Oath of DO NO HARM. We also need to demand more research money is spent towards finding a cure for fibromyalgia. Last, we need to educate the masses. Please watch Dr. Mackey's presentation.  Fibromyalgia is more than just aches, pains and ongoing fatigue!

Thanks for letting me share Fibromyalgia Awareness Day with you!

Truly, Britta

Saturday, May 7, 2011

Encountering Cement

Hello friends. 

It’s been close to two weeks since my last blog entry and although soon after publishing it, I had a draft of my next topic composed in my mind and ready to tap out on the keyboard, I couldn’t do it. Weeks of unending sleep deprivation from insomnia finally caught up with me. I could barely string an entire sentence together in written form let alone a blog entry. Fibro fog, short term memory loss, all of the problems associated with sleep deprivation were getting the best of me. Finally I had enough and I rescheduled my doctor’s appointment. As far as the topic is concerned, which I wanted to write about next, it will have to wait another week. It seems I’m going to have to do devote more time to it than I’m willing to today. For now, I thought I’d update you on how I’m doing.

My appointment this week went really well. However, I think I overwhelmed my doc with all of my notes and everything we covered. I mentioned I was bombarding her with information and she kind of let out a nervous laugh and said, “Yeah.” As usual, she took her time with me, really listened, took notes of her own and set in motion a new plan of action.
In case you’re curious, a part of the new plan includes a recommendation from a book my best friend suggested called Figuring out Fibromyalgia by Ginevra Liptan, MD. If you have Fibromyalgia, I encourage you read this book. In fact, I highly recommend it. If you want to know more about Fibromyalgia, I recommend you read this book as well. Anyway, I gave a copy of the book to my doctor. She’s going to help me get the Elisa/Act blood allergy testing recommended by Dr. Liptan. She also ordered another round of blood tests – 6 vials total. She tested everything again! As it turns out, I tested negative for Lyme Disease, but positive for a strain of Lyme. I’m starting a four week round of antibiotics today. Unfortunately, I don’t know what this means yet in relation to Fibromyalgia. I did read online that Lyme Disease can be a trigger for Fibromyalgia, but before I jump to any conclusions I need to consult her. She also sent my blood work in for further testing – Rocky Mountain Spotted Fever. It’s not prevalent in this area, so I’m not concerned.

Monday, April 25, 2011

Old Silver Fillings, Mercury Poisoning & Fibromyalgia

I'm currently experiencing an unpleasant (as if it could be pleasant) metallic taste in my mouth and have been for quite some time actually. At the end of a teleconference I recently participated in with others interested in learning more about Fibromyalgia treatments, we were given the opportunity to ask questions. Naturally, I asked about the possible causes of metallic taste in ones mouth. One of the doctor's hosting the teleconference said the three main causes of metallic taste or ringing of ones ears (which I have as well) are:

  1. Nerves over-firing
  2. Metal toxin exposure
  3. Medication effects

Initially I was inclined to believe the horrible taste stemmed from my nerves over-firing because I experienced the same thing shortly before the onset of Bell's Palsy in 2006. I ruled out side effects from medications because my doctor hasn't changed them in a very long time or at least not coinciding with the onset of my new symptom. I highly doubted metal toxicity too.

A few days ago my friend, Kim, suggested old silver fillings. Apparently, she had the same experience and after her dentist removed her old silver fillings, the metallic taste went away. She also said, “I have seen the cons of silver fillings. At my office and many other dental practices, amalgam fillings aren't even offered to patients. 60 minutes did an episode on mercury fillings about 10 years ago. Scary stuff!!” Considering she's worked in the dental field for over 20 years, I took her suggestion seriously and began my research online.

Saturday, April 23, 2011

Understanding Fibromyalgia and Your Family

A fibromyalgia patient typically experiences the “seven stages of grief” when they hear the words, "There is no cure." I know I did. Looking back and plotting along my timeline, I can almost identify each stage. I say almost because of this damn "fibro fog" and my memory problems. Anyway, for the most part, I think I've finally reached acceptance. Of course, this doesn't mean I've given up on my search for a more effective way to manage my symptoms. I will continue my search until researchers develop a cure.

The most difficult path traveled on my journey towards acceptance, aside from how it affected me, was knowing how my illness affected my family.  Last winter, while I sat wrapped in a heated blanket, my son cuddled up next to me and asked, “Mom, when are you going to be fun again?” Knife.Stab.Gut.Twist.Heart. Wrench. Both of my children remember and miss their fun mom. The mom that played four-square, basketball, freeze tag and a countless number of other games with them. The mom that took them to Skate Rattle and Roll on Friday nights and the mom who coached their soccer team. The mom I'm desperately trying to resurrect, while accepting my limitations and learning to pace my activities at the same time.

Of course, the children aren't the only family members missing me as I once was. My husband does, too. He misses his fun-loving wife, his best friend. The person who could hold her end of a conversation without having to search for words or loses her train of thought because of "fibro fog." He misses other things, too, like going out to the movies and/or socializing with friends. We RARELY do these things anymore. I'm either too tired or too sensitive to the noises and lights in environments outside of our home. Mostly, he misses the passion.

So many marriages have crumbled because of this illness and I thank my lucky stars everyday that I married a man, my soul-mate, who loves me and truly accepts me in sickness and in health. I fight so that we can continue on our journey through this life together, as soul-mates, lovers, and best friends.

Tuesday, April 19, 2011

New "Cutting Edge" Treatment in Fibromyalgia?

I recently participated in a teleconference hosted by Dr.'s Katinka Van Der Merwe and Dave Pascal of the Neurologic Relief Center in Fayetteville, Arkansas. They devote their practice to providing “cutting edge” treatment techniques in relieving a variety of symptoms to include pain associated with illnesses such as Fibromyalgia, Chronic Fatigue Syndrome, Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Lupus, Multiple Sclerosis and other neurological conditions.

Dr. Van Der Merwe opened the conference addressing why their techniques aren't well known to a large number of patients struggling with chronic neurological illnesses. According to her, they have tried on numerous occasions to educate the public through media exposure with limited success. Although she has appeared on the local news and Dr. Pascal on the Discovery Channel, they rely on Facebook, for the most part, because it's difficult to get national exposure on mainstream news media channels. Since the inception of their Facebook page, they've attracted 2,160 fans and are growing.

Saturday, April 16, 2011

Fibromyalgia Awareness Day 2011

Fibromyalgia Awareness Day is May 12.  My balloon is on a journey to visit people and places all around the world and needs your help to pass it along!

Fibromyalgia Awareness|Tribute Balloon

From the National Fibromyalgia and Chronic Pain Association:

The observance of National Fibromyalgia Awareness Day, officially May 12, can take many forms. The 2011 theme Walk to CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia) is the rally cry for fibromyalgia patients and supporters to make their collective voice heard.”

For more information on how to spread awareness and observe this day, click on the following link NFMCPA

Friday, April 15, 2011

Pedal to the Metal

Hey you, yeah you! Listen up, okay? I want you to turn down your TV, music, children or whatever you have going on in the background. I need to whisper something in your ear. Are you ready? Did you do as I asked? Great!

{whispers} I feel human today. Yes, it's true. I can hardly believe it myself. Gone is the fibro fog, mental exhaustion and physical fatigue. I'm not sure how long this is going to last, but I'm going to savor this day and take full advantage of it. Play out in the sunshine, hop, run, skip and jump! Perhaps even do some gardening. You know, do all the fun things I haven't been able to do in a while. Maybe we can end the evening with dinner out and a show like “normal” people do. Doesn't that sound grande? I have no idea what's playing at the local theatre; I'm sure we can find something to suit our taste.

Whoa, slow down there Nelly. Remember to pace yourself. Wait, did I just refer to myself a horse? *facepalm

On second thought, I'm not going overexert or do anything to cause a flare today, especially since last week I willingly participated in activities that exacerbated the beginnings of a flare. What? Yes, it's true. Last week, I pushed the envelope knowing I would hurt even more for it later.

Tuesday, April 12, 2011

Trauma and Unlocking Tissue Memory

Last week, I mentioned the mind, body, spiritual and emotional connection and how trauma can be stored in the muscles and cells of a person's body. While I couldn't find the original article to reference in my post, I found this article which supports the belief memories of traumatic events can be stored in areas of the body other then the brain.

Learn How To Unlock Tissue Memory
by Nicole Cutler, L.Ac.

Many scholars believe that pain and trauma are incidents prevented from being completed. These can be single damaging events such as a car accident, continuous bombardments requiring emotional defenses, or over-training of isolated muscles that lock the body into a recognized pattern. Traumas can be considered anything that keep us locked in a physical, emotional, behavioral or mental habit. Recovery from trauma is the process of the body finding balance and freeing itself from constraints. All too often, the recovery process is halted, preventing the traumatic occurrence from completing.

There are many reasons traumatic incidents cannot be completed, creating stagnation and causing a cascade of physiological protective mechanisms to separate the trauma from affecting everyday functioning. Because our bodies and emotions can only safely handle a limited amount of stress, trauma results whenever an experience exceeds our abilities to handle and cope with its consequences. The energy of the trauma is stored in our bodies’ tissues (primarily muscles and fascia) until it can be released. This stored trauma typically leads to pain and progressively erodes a body’s health.”

Monday, April 11, 2011

Rules Are Not Meant To Be Broken

I can hardly believe how late I stayed up the other night. When I looked over at the clock and saw the time, I thought, “Wow, you are going to pay for this tomorrow.” The combination of a short nap and an afternoon cup of coffee turned what’s normally an early night to bed into a late night TV marathon with my husband, Todd. However, by 1:30am, I knew I had to call it a night.

Once I finally found a comfortable position in bed, I noticed parts of my body twitched a lot more than usual. On any given night, my legs and/or arms twitch, but that night my shoulder and neck twitched too. And, not to feel left out, my entire body twitched once right before I fell asleep. The body twitches don’t happen frequently and are a real treat. [insert sarcasm]
It didn’t take me long to fall asleep because I take enough medications at night to tranquilize a horse! Now, if only they kept me asleep. As far as paying for it, I woke up with my normal aches and pains, but slept until 7am. Yay! Happy me! My internal clock was kind enough to compensate for the hours I missed by allowing me sleep passed 4am.
Funny, okay maybe not so funny, how quickly I can go from feeling relatively okay to completely crappy. Its like going from 0 to 60 mph in under 4 seconds and, basically, that’s exactly what happened:
I left the house to go on a grocery run. A dreaded chore now; however, one I loved to do before I got sick. Yes, from scoping out the produce section for the freshest fruits and vegetables; trying to avoid the junk food section, only to return and grab that bag of salt and vinegar chips; to comparing prices of toilet paper and wondering which brand of paper towels truly was the quicker picker upper, I enjoyed all of those things. Okay, I’ll admit, I didn’t enjoy grocery shopping when my kids were younger and I had to drag them with me.
This shopping trip, however, was especially bad. I felt excruciating pain in my back simply from pushing the grocery cart down the aisles. And, each step I took seemed to cause every muscle in my body to spasm and my legs to weaken. My stride slowed considerably as my body stiffened from my ever-so-aching joints. Even the fluorescent lights and the noise from the other shoppers and store employees caused discomfort; random pain searing through my head. I could feel a migraine coming on.
Fortunately, Todd and the kids accompanied me. The kids helped out immensely by getting the dry goods from the list and Todd took over when I could no longer push the cart. He also loaded the groceries on the belt and into the van when we left the store. Without their help, I probably would have abandoned the groceries in the middle of the one of the aisles. Needless to say, my next few days were shot.
While recovering, I berated myself for breaking certain rules we, as fibromyalgia survivors, must follow. Dr. Jacob Teitelbaum, a board certified internist and Medical Director of Fibromyalgia and Fatigue Centers, defines these rules “as the five common no-no’s,” we commit when trying to manage our illness:
  1. Exercising too much or too little
Fibromyalgia reflects an energy crisis in your body, so you can only exercise to a certain point. Beyond that, you get what is called “post-exertional fatigue,” where you feel completely wiped out the next day. Be careful to avoid this as it can discourage you from the moderate exercise that is vital to healing fibromyalgia. On the other hand, insufficient exercise results in de-conditioning and clearly can worsen your ability to function.
  1. Not Knowing When to Say “No”
Being too agreeable to things you don’t really want to do is a major stress that aggravates people with fibromyalgia. Try more often to allow yourself to say “no” when what is being asked of you doesn’t feel good.
  1. Not Listening When Your Body Tells You it’s in Pain
Widespread muscle pain is one of the most dominant symptoms associated with fibromyalgia. When you feel pain, remember that that’s your body’s protective system signaling you that something needs attention. Don’t dismiss the pain or try to “play through it.” Instead learn how to manage fibromyalgia-related pain using a comprehensive approach.
  1. Eating Excessive Sugar
Eating excessive sugar (especially in sodas or fruit juices) can severely flare fibromyalgia by worsening adrenal exhaustion and Candida/yeast overgrowth. Eat a high-protein diet and substitute Stevia or Saccharin for sugar. Sugar-free ice cream with Splenda and sugar-free chocolates with maltitol are also okay (in small amounts). Dark chocolate can actually improve fibromyalgia and chronic fatigue syndrome symptoms!
  1. Not Getting Enough Sleep
It may seem counter-intuitive, but people with fatigue-related illnesses, such as fibromyalgia, often get too little sleep. Getting eight to nine hours of good quality deep sleep each night is critical to eliminating fatigue and pain.”

Wednesday, April 6, 2011

Sometimes Advice Should Be Ignored

I had an interesting conversation with a woman during my physical therapy appointment yesterday and it only reinforced the importance of seeking advice from a physician, pharmacist or just flat out using common sense.

According to her, extra strength Orajel can be applied to other areas of the body, not just on the gums of a person's mouth. Apparently, she said, it contains a better numbing agent then some of the other creams on the market.

I thought, you know, maybe she's on to something here. Orajel is used all the time for teething babies. Why not other types of pain?

She recommended applying a good-sized goop along with some heat and swore the pain would disappear for three years.

My therapist and I exchanged looks and I jokingly said, “Well, I guess I'm gonna have to fill my tub with some Orajel tonight.”

Come on, a three year pain cure? Taking nothing for face value, I looked up her claim on the internet as soon as I got home and found Orajel or rather its active ingredient, benzocaine, is used as a numbing agent for certain medical procedures and even minor skin irritations; however, it should NEVER be applied over larger areas of skin. An overdose can cause fatal side effects.

Don't believe me?  Please check it out for yourself:

Monday, April 4, 2011

The Mind, Body, Spirit and Emotional Connection

I often wonder what triggered my fibromyalgia. What flipped the switch in my body to make my own Central Nervous System turn against me? Aside from childbirth, I never experienced a physical trauma. Maybe I sustained more of a emotional trauma than I realized, when my Mother passed away from cancer in 2006. Of course, the possibility exists as well that it was triggered by a virus. Perhaps, it's a culmination of all three.

The more I research Fibromyalgia causes and treatments, the more I am inclined to believe a connection exists between the mind and body. Don't misunderstand me, I'm not suggesting our pain exists in our heads. On the contrary, I read somewhere (I wish I would have bookmarked the page to reference it here) when your body experiences any kind of trauma, it stores the memories of the experience(s) in the muscles and cells in your body. It's those muscle and cell memories, along with Central Nervous System abnormalities, which cause pain throughout the body. It makes sense to me because I believe the human body is not wired to exist in separate parts – we are body, mind, emotion and spirit. Inseparable, until death.

For this reason, I tried Craniosacral therapy for the first time last week. For those of you not familiar with this type of massage therapy, it involves light touch between the cranial (head) and sacral (lower abdomen) areas of your body. In the most simplest of terms, the massage therapist gently places his/her hands above and below parts of your body, following the path of your spine, and uses energy to release tension and blockages, thereby stimulating the flow of cerebrospinal fluid. This type of massage is credited for managing many types of conditions to include migraines, neck and back pain and chronic conditions such as Fibromyalgia.

You may be wondering if it worked for me. I cannot commit to an answer either way just yet. It's very likely I will require more sessions to experience any substantial relief from symptoms. However, I can relay my experience with you.

Before starting the session, Joyce and I discussed my condition and I explained this was my first time. She assured me it would be a pain-free experience (unlike some other massage modalities) and a very relaxing one. She also warned that some clients become emotional because of the release of tension and blockages within the body or that I may feel the need to stretch my arms and/or legs. She also said she would not speak unless I had questions; she would follow my lead.

Joyce worked differently than what I expected. She started at my feet and moved to my knees. She then moved to my lower abdomen and slowly up to my head. Once she reached my head, she stood behind me and gently cupped my head in her hands. I felt immediate pain in my neck and shoulders and she could tell. She gently placed my head back down on the pillow and worked around my neck and face. Then she continued down my spine back to my abdomen. This time while she worked on my lower abdominal area, I felt the most amazing warmth come over my entire body. With my eyes closed, I saw different hues of purple. I felt a sense of indescribable calm and peace. It was the most amazing feeling and I didn't want it to ever end. Unfortunately, Joyce spoke to me and interrupted my calm. Ironically, she explained what I might start feeling and that some clients begin see colors at a certain point when blockages are released. As hard as I tried, and maybe that was my problem, I couldn't get back to that state of calm. As Joyce continued with the massage, I noticed she concentrated a lot on my right shoulder, both hips and right knee even though I never mentioned these areas as bothersome. She mentioned feeling drawn to these areas and perhaps that's why she began at my feet as well. At the end of the session, she returned to my head and cupped it again. This time I felt no pain.

I left feeling drained, exhausted of all energy, and dreading the drive across town to get home. Joyce warned me to drive carefully because my senses would be dulled as would my reaction time. When I arrived, I don't think I was home for more than 10 minutes when a surge of emotions hit me hard. My tears flowed freely as I described the session to my husband, Todd - the overwhelming sense of calm, and beautiful, vivid shades of purple. Overall, I think had it not been for the interruption, the session would have been a more satisfying holistic experience. That's not to say the massage was unsatisfying. Remember at the beginning, I felt pain in my neck and shoulders when Joyce cupped my head, but at the end I didn't. This is why more sessions may be necessary to really benefit from Craniosacral therapy or any alternative therapy really. For as we all know, there's no such thing as a quick fix.

Thursday, March 31, 2011

Allow Me to Introduce Myself

My name is Britta and I was diagnosed with Fibromyalgia during the Fall of 2009.   I wish I could say my life has gotten easier or better since being diagnosed, but it hasn't.   I do my best to manage my illness, which is about all any of us can do.  I have two children, aged 11 and 8, and a husband I adore.  I'm not able to do a lot of the things I'd like to do with them; the things "normal" people take for granted.  I find I struggle almost on a daily basis and have to rest because I am either in too much pain or too fatigued to do anything else, especially during a flare.  I am slowly learning how to better pace my tasks, so that I can enjoy my family.  Unfortunately, it is a trial and error learning process and I find I tend to overdo certain activities. My greatest desire is to just be in the moment with my beautiful family and forget my health woes.

Life with Fibromyalgia causes an endless amount of frustration, because there's so much we have yet to discover about this illness.  Let there be no doubt, the Fibro fight is an uphill battle.  And, it certainly doesn't help when naysayers in the medical community or elsewhere discredit Fibromyalgia as a "fake illness."  Let me assure you, Fibromyalgia is real, very real. 

When you are first diagnosed with Fibromyalgia, your doctor begins prescribing medications to manage your ongoing list of symptoms and typically recommends alternative therapies.  If you are lucky,  you tolerate the medications and respond well.  If you're not lucky, the medications don't help or you may even suffer from horrendous side effects worse then Fibro itself.  In a nutshell, Fibro survivors have to work closely with their doctors to find the right combination of medications to manage their symptoms.  

My intention with this blog is not to paint a bleak picture of this illness, but to share all I can about my Fibromyalgia treatment experiences with you as well as explore options* and coping techniques. Mostly, I intend to share my experiences as a Fibromyalgia survivor, wife and mother.

*Please keep in mind I'm not a medical professional and cannot make any recommendations regarding what treatment plan you should pursue.