FM Support Group

After all these years, I finally found a fibromyalgia support group close enough to make it feasible for me to attend. While there are many forums and information on-line, nothing replaces face-to-face contact.

I met with the group for the first time last week. It was a gratifying and humbling experience. Gratifying to talk to others who understand that the simple act of getting showered and dressed to go out can be completely exhausting. Humbling to hear some of the trials and tribulations others have faced. Many had other serious health issues on top of the fibromyalgia such as migraine headaches, lupus and serious environmental allergies. Many had symptoms I've never experienced like sweating profusely with the slightest exertion or severe Tinnitus, ringing in the ears. It made me grateful for the good health that I do have!

I also met a guy with FM, which was a first for me. There was some discussion among the group about how commonly FM occurs in women vs. men. I've heard around 80% of those affected by FM are women, but the leader of the group insisted it was only about 60%. She said most men don't get diagnosed because they just tough it out. Either way, the majority are women.

I found the support group by searching on-line. There were several sources that listed fibromyalgia support groups based on location. If you're looking for a support group, I suggest using our good friend Google to locate one.

Que Sera, Sera - What Will Be, Will Be.

Here's a confession: I'm scared...I'm anxious...I'm worried. There's something wrong with me (besides the fibro) and I don't know what it is. Just this week, I've had a chest x-ray, blood work, and an EEG. So far, I've eliminated a brain tumor and lung cancer - two bullets dodged!

Not knowing is killing me. On the other hand, I'm afraid to find out what it is. I did a tarot reading to try and get some clarity on the issue. The first card I pulled was the Five of Disks - the worry card. The Five of Disks represents worry about a physical concern such as health or money that is keeping the person in a state of anxiety. How appropriate is that?

According to The Tarot Handbook by Angeles Arrien, worry is a state of being:

It is the state of being/consciousness that always takes us back to the past or into the future but never has one handling the present.

That is very true for me. I'm either worrying about all the health issues I've had in the past and how difficult they have been to overcome or I'm worried I have some terrible, debilitating disease or tumor.

Arrien goes on to say:

...you can collapse worry by staying present and not getting pulled into future concerns or past experiences.

 Now every time I start to worry about what horrible disease I might have, I hear Doris Day singing:

Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

And I swear it helps!


P.S. Blood work showed that I DO NOT have rheumatoid arthritis or Lyme disease. Two more bullets dodged! My doc is stumped and referred me to her favorite rheumatologist. She sent him my "sad story" so he'll have all the background details.

Wishes for a Healthy New Year in 2011

The holidays are over and we can all breath a sigh of relief. In fact, take three deep breaths right now. The holiday season can be filled with fun, family and friends, but it can also be filled with stress and system overload, especially for those of us with fibromyalgia. But it's a new year, a new day. Time to take time for ourselves. Time to get back into an exercise routine, but rest when you need it. Time to be kind to yourself and not expect too much. Time to take it easy, relax. You deserve it!

My New Year's Resolution for 2011:

To be healthy and vibrant and cope easily with life's changes.

Life is full of changes, whether it's menopause, children growing up and going off to college or simply the change of seasons. These changes can cause stress on our bodies which can depress our immune systems, cause fibro flare-ups, sleep disturbances and other unhealthy responses. The trick is to cope with the changes in a way that keeps us healthy and strong.

My strategy to be healthy and vibrant in 2011 is to continue to look for the root of the pain I've been having in various areas of my body. It's a different kind of pain than I've experienced with FM so I think there is a another cause. So far, I've ruled out a recurring brain tumor and consulted with a Neurologist who thought that it was not a neurological problem. Just to be sure, she ordered a few tests to rule out some possibilities. I'm determined to figure out the underlying issue so I can treat it and be healthy and whole.

My strategy to cope easily with life's changes is to deal with past traumas that have created negative belief systems which can cause dis-ease in my body. My therapist recommended a therapy called EMDR, Eye Movement Desensitization and Reprocessing. By following a flashing light with the eyes, a part of the brain is activated which can process the trauma and reprogram the memory into a positive belief. I'm not sure exactly how it works. In fact, even the experts don't know exactly how it works. But I trust that it will be beneficial to my emotional and physical health.

So, to all my readers out there in cyberspace, I wish you a healthy and happy new year, filled with a renewed passion for life and an ability to cope with all of life's changes coming your way.

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.

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!

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.

BRING ON THE TIGERS!

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.