Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Thursday, December 16, 2010

Put Out the Fire: Fibromyalgia Flare-ups

Fibromyalgia, like a fire, burns whoever, whenever and wherever it can. Like a wildfire, FM can strike unexpectedly, at any time. But how do you put out the fire?

When a major flare-up hit me this fall, I had a dream that I was working at a daycare center when a small fire broke out behind the building. None of the teachers knew how to react or what to do. I shouted at them to get the children out and send them home. Then I grabbed a fire extinguisher and ran outside. I put out the fire but the ground was still hot and flames would start spontaneously. I kept putting out the flames and eventually disaster was averted. However, one of the fathers was irate because he had to come and pick up his child and demanded to know the protocol for emergencies. I was angry with the owner of the daycare for not having a policy for dealing with emergencies.

When I woke up, I was struck by the message: Put out the fire! I had to put out the fibro flare-up before it raged out of control. The women in my dream circle asked me what kind of policies I needed put into place for emergencies, in my dream as well as waking life.

Here is the list I came up with:

  1. Sound the alarm - Listen to your body. My body was sounding the alarm loud and clear through extreme fatigue, flu-like aches and pains as well as acute depression and anxiety.
  2. Evaluate and Evacuate - Evaluate how extensive the "fire" is. Do you need supplements or heavy-duty drugs? Make sure all your "children," whether emotional, physical or mental parts of yourself, are out of harm's way as soon as possible. 
  3. Call for help - Don't be afraid to ask for help. Within a week of the flare-up, I had called on my doctor, my therapist, my acupuncturist and my dream circle for help.
  4. Notify loved ones - I told my family and friends what was happening to me so I could get the help and support I needed.
  5. Douse the flames - Deal with the flare-up before it becomes a conflagration. Through supplements, acupuncture, hot baths, good sleep hygiene, meditation and lots of love and support, I kept putting out the flames until they didn't come back anymore.

Tuesday, December 14, 2010

To Hell and Back...

I woke up yesterday feeling "normal" for the first time since last summer. This has been one of the most intense, painful and scary journeys I've ever endured - and I've endured quite a few in my life! I feel like I was under attack and I've been in fight or flight mode (mostly fight - it's hard to run away from yourself) for months.

Now that things have calmed down, I'm a bit shell-shocked. What the hell just happened to me? Why? Will it happen again?

I'll continue to seek answers to those questions over the next few months. Meanwhile, I'm just grateful to feel like "me" again. To feel like a human being!

Saturday, December 11, 2010

When Tigers Appear, Adventure is Near

Tigers have been stalking my dreams, both waking and sleeping, for the last few weeks. According to Animal Speak by Ted Andrews, tigers symbolize passion, power, devotion and sensuality. If a tiger enters your life, new adventures will begin within the next 6 to 8 weeks, and it will reawaken your passion and power.
If tiger has shown up, there will begin to manifest new adventures and renewed devotion and  passion for life. ~ Ted Andrews
M/Y/D/S Animal graphics

Andrews asks: Do you need more passion for life? Has your energy been down? The answer is a resounding YES and YES!

Even during the summer when I was feeling great physically, I noticed that my passion for life was sub-par. Things that usually bring me joy, such as painting en plein air (outdoors), left me bored and uninterested. Then I had the mother of all fibro flare-ups this fall followed by a series of painful episodes beyond the fibromyalgia, from a stiff neck to excruciating back pain to barely being able to walk on my right foot.

But I fought like a tiger, scratching and clawing my way out of the pit and back into the light. Here are some of the weapons in my arsenal: SAM-e and 5-HTP elevated my mood and regulated my sleep without having to resort to prescription medications; meditation combated the anxiety; acupuncture, chiropractic adjustments and physical therapy helped alleviate the pain.

Now I'm ready to reawaken passion in my life.
I'm ready for a renewed devotion to my creative work.
I'm ready for adventure.


Tuesday, December 7, 2010

The Good News: No Brain Tumor!

The good new is that my latest bran scan was completely normal, confirming that the benign brain tumor I had removed in 2005 has not returned. The bad news is that I still don't know why I've had extreme pain from head to toe over the past several months. The last time I had these symptoms, an MRI revealed a meningioma, a benign brain tumor, pressing on the sensory part of my brain.

Chronic inflammation is always an issue in fibromyalgia patients, but this goes way beyond FM. It started last August with a stiff neck so painful that I couldn't move my head. My doctor recommended physical therapy, which I've been doing twice a week since September.

Just before Thanksgiving I ended up in the ER with back pain so severe that the doctor thought I was passing a kidney stone. It was worse than giving birth! But the labs were all normal, so he sent me home with a diagnosis of muscle pain.

Now I can hardly walk on my right foot. I've had Plantar Fasciitis in the past, but this is much more painful than ever before. I feel like my body is screaming at me, but I just don't know what it's trying to tell me. My doctor recommended a neurologist in Boston, but it turns out she only sees epileptic patients or pregnant women with headaches. I'm not epileptic nor am I pregnant nor do I have headaches. So, I'm back to square one in figuring out this mystery.

My acupuncturist suggested that I get tested for Lyme Disease. He warned me that the standard blood test for Lyme is only 65% accurate - that means that more than a third of patients are misdiagnosed! He recommended that I ask for two tests called CD 57 and Western Blot.

For now I have to accept the mystery and manage the pain as best as I can. Will keep posting on future developments.

Sunday, November 28, 2010

You Might Have Fibromyalgia If...

I'm no Jeff Foxworthy, but if you recognize yourself or a loved one in many of these situations, you or your loved one might have fibromyalgia.

You Might Have Fibromyalgia If...
  • You sleep 8 to 10 hours and wake up more tired than when you went to bed
  • A short walk around the block leaves you completely exhausted
  • While recovering from your walk around the block, your leg muscles twitch like crazy
  • You're so exhausted from grocery shopping that you put away only the perishables and leave the dry goods on the counter until after you can take a long nap
  • You need to take a nap after a hot shower or bath

You Might Have Fibromyalgia If...
  • A cloud of fog descends around your head and follows you where ever you go
  • Radio static is playing inside your head and you can't change the station
  • You read a recipe over and over because you can't remember how many teaspoons of salt you need between reading the list of ingredients and actually measuring it out
  • In the middle of a conversation, you can't recall the specific word you want to say and every one stares at you like you're a complete idiot

You Might Have Fibromyalgia If...
  • Your whole body aches so badly that it even hurts to blink your eyelids
  • While doing dishes, you want to shrink yourself down to fit in the sink so you can soak your aching body in the hot water
  • Going up and down the stairs is like running a marathon
  • No matter what chronological age you are, you feel like you're 85
  • You're experiencing so much pain that brushing your hair hurts

You Might Have Fibromyalgia If...
  • Your PMS is on steroids and your symptoms are 100 times stronger than ever before
  • You develop all kinds of food sensitivities like dairy and wheat then realize everything has wheat in it
  • You take so many supplements that your medicine cabinet looks like a pharmacy
  • Your immune system is shot and it takes 10 times longer to recover from every cold, flu or virus
  • One day your plumbing is all clogged up and the next day it's running like crazy

You Might Have Fibromyalgia If...
  • You're so depressed that you can't tell if you're depressed because you feel so bad or if you got depressed which makes you feel bad
  • You feel anxious at any point during the day or night for no particular reason
  • You cry at anything, including sappy Hallmark commercials
  • You crave chocolate so badly that a Hershey bar is better than sex
  • Your hands and feet are cold even in 90 degree weather

You Might Have Fibromyalgia If...

For a complete list of symptoms, check out the Fibromyalgia Symptoms Checklist

Sunday, November 21, 2010

How Do I Know if I Have Fibromyalgia?

A friend of mine asked me that very question the other day. She has various aches and pains and feels fatigued enough that she needs to nap every day. First I told her to consult her physician. Other diseases or syndromes with similar symptoms such as lupus or rheumatoid arthritis need to be ruled out first. If my friend's doctor thinks fibromyalgia is a possible diagnosis then she should make an appointment with a rheumatologist.

The problem with diagnosing FMS is that is doesn't show up on any lab work, blood tests, x-rays or MRI's. Many people are misdiagnosed or told it's all in their heads. It can be hard to find a doctor who knows how to diagnose fibromyalgia let alone treat it. Finding a competent doctor is the first step.

In the old days - like back in 1997 when I was diagnosed - the diagnosis was based on as system of tender points affecting every quadrant of the body. If 11 or more of the 18 tender points were painful when pressure was applied, then fibromyalgia was the diagnosis. The doctor also looked at other symptoms, such as extreme fatigue, waking unrefreshed, brain cognition issues (the good old fibro fog), depression, irritable bowel syndrome and a whole host of other physical symptoms such as numbness and tingling, headache, and nausea.

While researching the diagnosis for fibromyalgia, I learned that there are new diagnostic criteria in 2010. Critics of the old system felt that it was too subjective and unreliable. Someone might have 11 painful tender points one day and only nine the next but still have FMS. The new system takes into account more symptoms than just the tender points and provides a scale for measuring the severity of the symptoms.

The widespread pain index (WPI) lists 19 areas of the body. The patient is given one point for each of the areas that have been painful in the last week for a scale of 0-19. For the symptom severity (SS) scale, the patient rates a list of symptoms on a scale of 1-3 for a total of 0-12.

For a diagnosis of fibromyalgia you need EITHER:
  1. WPI of at least 7 and SS scale score of at least 5, OR
  2. WPI of 3-6 and SS scale score of at least 9
To read more about it, take a look at The Fibromyalgia Diagnosis

Tuesday, November 16, 2010

My Meditation Method - it works!

English: Djana leads Tibetam Nadabrahma MeditationImage via WikipediaMeditation and other stress relief techniques have a positive impact in dealing with fibromyalgia, not to mention life in general! As a visual person, I tend to use guided visualization techniques. I run a script in my head and visualize the scene in my mind's eye. A series of influences converged to help me create a specific guided visualization technique that seems to be effective in dealing with my latest fibro flare up.

While visiting my dad over the summer, I found an old copy of The Power of Positive Thinking by Norman Vincent Peale. I brought it home with me because I've found that positive thoughts have a huge impact on fibromyalgia (not to mention life in general). I put it on my nightstand and forgot all about it.

In the fall, my fibro flared up and I noticed quite a bit of anxiety along with all the familiar symptoms of fatigue, pain, sleep disturbances and depression. I would wake several times a night, and as soon as my conscious brain realized I was awake, I'd be flooded with a wave of anxiety from head to toe. Of course, that just made it all the more difficult to fall back to sleep. No wonder I was waking up exhausted and achy!

One night, I rediscovered The Power of Positive Thinking on my night stand. I read the chapter called "A Peaceful Mind Generates Power." According to Peale, lack of energy can be caused by the accumulation of a lifetime of anxiety and worry. He suggests that everyone take time each day to empty the mind of fears, hates and worries then refill it with peaceful thoughts. During the day, practice thinking peaceful thoughts when those old worries and fears try to edge back inside.

So, here is the technique I created to empty my mind and fill it with peace. Part of the technique was adapted from a book and tape called Prepare for Surgery, Heal Faster by Peggy Huddleston, which I used during my brain surgery five years ago. I share it with you in hopes that it will help you, too.

Filling The Mind With Peace:

First I put myself in a quiet space, like soaking in a tub. I close my eyes and imagine myself gathering all my worries, anxieties and fears as if each one were a small stone. I collect all the "stones" in a basket until my mind is clear. Then I imagine myself standing on a footbridge over a babbling stream (think Monet's Japanese Bridge at Giverny). I drop each of my "stones" over the bridge into the water. Sometimes I drop them one by one, sometimes I just dump the whole basket of stones at once.
Monet's Image via Wikipedia
Once my mind is clear, I imagine a healing white light coming down from above and entering the top of my head through my crown chakra. The light fills my skull, surrounding my brain in healing white light. It soothes my worries, raises my serotonin levels, aligns and balances all my brain functions. Then I imagine the light going down my neck and spine. It goes down my right shoulder, arm and hand. It goes down my left shoulder, arm and hand. It fills my chest cavity and pelvis. It heals all my organs and internal systems. Then I imagine it flowing down my right leg, pushing all the old, tired energy into my foot and out into the Earth. I imagine the same thing on the left leg.

Now I picture my entire body filled with healing white light. I feel energized, healthy and whole. Every system, every cell in my body is in perfect working order.

I go back to that image periodically during the day to stay peaceful and positive. I've had much less anxiety during the day and especially when I wake at night.

Try it out. It can help even if you don't have fibromyalgia!


The Power of Positive Thinking
by Dr. Norman Vincent Peale

Prepare for Surgery, Heal Faster: A Guide Of Mind-Body Techniques
by Peggy Huddleston
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Thursday, November 11, 2010

There is HOPE for Fibromyalgia and Chronic Fatigue Syndrome!

After more than a decade of feeling like I was trapped in a bottomless black hole, I finally found the right place with the right doctors who were able to help me climb into the light. The doctor who first diagnosed me with FMS told me to go home because there was nothing I could do to treat it. What a jerk!

Luckily I didn't believe him. I sought out an assortment of health care practitioners from Eastern to Western and everything in-between. Step by step I made improvements, but I was far from well. Finally a friend gave me a postcard announcing a new clinic called the Fibromyalgia and Fatigue Center (FFC). It wasn't cheap and they didn't take health care insurance, but I would have paid anything to get my life back. And they delivered!

Unlike most doctors, the staff at the FFC actually knew how to treat FMS and CFS and they attacked it on many fronts. The first priority was to regulate my sleep. I could sleep for 10 hours and wake more exhausted than when I went to bed. Fibromyalgia patients tend to stay in the light Alpha waves of sleep and never get to the deep, restorative Delta wave cycle. With a combination of prescription meds, supplements and a strict sleep hygiene, I began to feel better. It's amazing what a difference a good night's sleep (or week's or month's) can do! They also regulated my thyroid hormones, boosted my immune system and lifted the pain and depression (I called Cymbalta my "happy drug").

Unfortunately, the FFC near me closed just as I was about to reach the maintenance level. They offered a long distance plan at a center three hours away but I never proceeded with that. I've been trying to manage on my own, but it's been difficult.

The good news is that I tracked down the doc who really helped me at the FFC. She's now with the Harvard Vanguard Pain Management Team. I'm hoping to get an appointment with her as soon as my referral goes through.

If any of you out there in the blogosphere suffer from FMS or CFS, I highly recommend that you check out the Fibromyalgia and Fatigue Center or call 866.443.4276

Good luck and don't give up hope!

Wednesday, November 10, 2010

The Universe says "YES!"

If I was feeling a bit uncertain about starting this blog and putting my life out there for the whole world to see, I'm sure I'm doing the right thing now.

My friend sent me a link to an article titled "6 Ways to Feel Better with Fibromyalgia" on the Everyday Health website. Lo and behold, the second bullet point encouraged writing about your experiences as a way to help deal with the pain. And I quote:
Unleash your creativity. Expressing the way you feel through writing or art has been proven to relieve pain and improve symptoms. One study found that female fibromyalgia patients who wrote about their traumatic experiences had a significant reduction in their pain and fatigue and became more psychologically healthy overall. 
Check out the entire article for more tips such as listening to music, relaxation techniques (I use guided visualizations all the time and it really helps),  and aroma therapy.

6 Ways to Feel Better with Fibromyalgia

Sunday, November 7, 2010

It's Not Easy Being Pink

Being a woman can be difficult. During our childbearing years, our hormones force us on a monthly roller coaster ride  until we finally burst into hot flashes and burn out. We get headaches from bumping into all those glass ceilings (we still don't have a woman President or Vice President in the White House). And we're afflicted with a myriad of health issues from breast cancer to autoimmune disorders. Did you know that 75% of those with autoimmune diseases are female and that autoimmune diseases are one of the leading causes of death and disability in females under 65?

I've had fibromyalgia since 1997 and that's why I started this blog. Not only to share my own experiences, but to give women a place to bitch and to listen; to seek advice and give advice; to find a community that understands what it's like to go into crying jags for no particular reason or feel like aliens have taken over our bodies or to look in the mirror and swear that every pair of jeans we own makes our butts look big!

So leave a comment and bitch away...