My Rock Bottom With Fibromyalgia by Kelly Slevin, Guest Post

Today I am scared.

I want you to know this because all of these things have culminated over the last ten years into what I deal with today and who I have become. It’s always been a goal to write my life story. If I don’t figure out how to deal with all of this, I may not have that chance. I know everyone has a story. I feel like mine is

important to share. For many reasons, but mainly to help myself.

When I turned 16, like every normal teenager, I got my driver’s license, eager to have the freedom and independence to begin to head out into the adult world and lead a life of my own. A life of my own choices filled with responsibilities and independence and fun and adventure and love and purpose... A life leaving behind the anguish I went through growing up, the one where I caught my mother naked in bed with another man in my parent’s bed when I was 5, the one where she eventually chose that man over my father and sister and I and left the three of us for good when I was 7. I would always wonder why my mom didn’t want to be with us, why we were so unimportant as to promise to come and visit and then never show up- leaving our noses pressed to the window in disappointment as every passing car proved not to be hers. Given she isn’t the best mother, she brought me into this world and for that, I love her.

My new life was also leaving behind the eventual step-mother whose absurd rules left me resentful toward both she and my father- I was 10 when they married and she was only 11 years older than me. Just some of those rules included things such as kitchen closing at 8pm, bedtime at 9pm, eating everything on the dinner plate whether we liked what she cooked or not and sitting there at the table for hours until everything had been eaten, washing our own dishes, packing our own lunches, being locked in our rooms when we were a bother and when we broke the rules, the punishments over the years ranged from slaps across the face, hairbrushes and wooden spoons whacked across our behinds, sometimes so hard the object would snap, to even being dragged up the stairs by my hair one time to be locked in my room. Although she may not have been my mother, and nasty at times, she was more of a mom to me than the one who gave birth to me, and I do love her.

At 13 I moved in with my grandparents because I couldn’t take it anymore, my sister came with me. My grandmother (my Mams) had always taken care of me. On top of all of the above, I had been a sickly child.  I had major surgery when I was 4 where they reconstructed the left side of my kidney to correct the defected tubes (I had an extra) connecting to the bladder. Mams had always taken good care of me when I was sick. I remember how sad I was one year when I was lying on her couch feverish and ill, watching Trick-or-Treaters coming to the door for candy. I miss her.

My little sister has always been my “rock.” Being 4 years behind me, she didn’t always necessarily know what was going on, but in my moments of sadness and tears, she would always give me a hug and tell me everything would be ok. She always made me feel better. I can’t imagine being here today without having had her in my life. I love her.

At 15 I moved back home. My sister came with me. The fights continued with my stepmother; even driving me to go so far as to lie myself across the railroad tracks behind my house one night. I’m not so sure I would have stayed there anyway, but the neighbor came over and made me get up. The fact that I even went that far should define the anguish I was feeling.

It's My Party And I'll Cry If I Want To!

I haven't blogged for a long time and it wasn't my intention to start blogging on this particular subject today. As a matter of fact, I actually started a different entry a few weeks ago, but had to set it aside because I hit a mental snag in my train of thought.

Earlier this morning, someone posted a wonderful, uplifting blog entry on my “Life with Fibromyalgia” Facebook page regarding what it feels like to have Fibromyalgia. Another person commented, “Great descriptions and details about how it feels but yet it didn't sound like a pity party...although there's nothing wrong with a pity party once in a while!” While I completely agree with this person's comment regarding the blog entry, I have to say I'm deeply entrenched in my very own private pity party. So much so that I'm singing, “It's my party and I'll cry if I want to, cry if I want to!” through my tears. And, that's exactly how I feel damn it!

Since being diagnosed with Fibromyalgia, scratch that, preceding the diagnosis, I could feel my pain and fatigue levels progressively getting worse. Sure, I get moments of relief from the pain where I think, “Could this be the break I've been praying for? The remission I've been promised?” only to find out not long after,  it's not. I felt that way this morning. For about an hour, I felt human. Imagine, feeling human for an hour – no pain, no fatigue! And, to have it suddenly taken away from you AGAIN.

I've lost friends who no longer take the time to call me, text me, or ask me how I'm doing because (I assume) they honestly do not want to hear the answer.  Rarely if someone does ask, I quite frankly flat out lie and say, “I'm fine.” It's easier and spares us both of the long, uncomfortable silence. If I'm honest about how I'm really feeling, they find an excuse to break off the conversation or out of kindness to them, I break it off myself. Why bother when it's easier to lie? Sometimes I tell them the truth in an email.  A lot of times I never get a response, not even from my “dearest” of friends. I need to stop doing that for clearly I'm setting myself up for disappointment. I find it tiring telling people how much pain I'm in or how fatigued I am and I assume they find it just as tiring hearing about it.  Understandably, friends get tired of asking if I can or want to do something with them because more often than not, I can't. In their defense, I rarely answer my phone anymore because I find listening hurts. Whatever it is – the frequency over the telephone lines – I don't know, talking on the phone is painful (to me).

Today, I planned to clean my house. Typically, on high pain days (most days) I can't clean my house and rely on my family to do a lot of the household chores for me. However, they don't tackle the jobs and deep clean the way I do or did when I was able too. I asked my husband if we could get help. He said, “No, we couldn't afford it without making sacrifices. Your medications cost too much. We could cancel TV.” Sacrifices, eh? What more should I sacrifice, I ask myself? My health has been sacrificed already and I didn't ask for this. No one does. Granted the sacrifices are different – apples to oranges – if you will. I shouldn't compare my physical sacrifices to household budget sacrifices.

Fibromyalgia is commonly referred to as an invisible illness because those afflicted by it don't look sick. I ask you to compare these two pictures taken almost four years apart and tell me what you see.

July 2008

February 2012

A few months ago, I started reading Toni Bernard's book, How To Be Sick: A Buddhist Inspired Guide for the Chronically Ill and their Caregivers. Unfortunately, I put it down without finishing it.  I saved a passage from her book or her Facebook page, I'm not sure, that resonated with me the last time I felt this way. She wrote:

"Self-pity can be so painful. The good thing is that, like all thoughts and emotions, it won't stay in your mind forever. It will arise and it will pass. When it's present, I recommend just being mindful of it and treating yourself kindly about it -- with self-compassion -- even speaking to yourself with phrases such as, "it's so hard to feel this way." Try not to feed it with stories about your life -- the list of injustices, etc. because that will just make it stronger. The idea is to hold it in your awareness without aversion until it passes. If speaking to yourself kindly makes you cry, that's okay because these are just tears of love for yourself. It's hard not to feel that sense of injustice, but life happens to everyone in a different way. We all have our joys and our sorrows, and the only possibility for peace is to be able to greet all of life's experiences with an open . I know there are joys to come for you. I just know. So, try to accept the sorrow you're feeling right now and know that it will pass."

So, yes, I'm throwing myself a pity party without guilt or worrying about having to justify my emotions to anyone; however, I do need to refocus my thoughts and try to let go of the injustices and limitations caused by this chronic pain illness and recognize my sadness for what it is ~ a human emotion. But, let me ask you this, my non-fibro family and friends, wouldn't you cry, too, if this happened to you?

Truly,

Britta

Take the Quiz: Test Your Knowledge of Fibromyalgia (Fibrositis) - on RxList.com

Take the Quiz: Test Your Knowledge of Fibromyalgia (Fibrositis) - on RxList.com

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 …

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.

An Update on Fibromyalgia by AllThingsScience

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

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.

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.

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.

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

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.

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.”

Continue reading this entire article

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.

2. 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.

3. 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.

4. 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!

5. 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.”

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:

Orajel

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.

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.