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

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

Sunday, February 27, 2011

Find Doctors Treating CFS and FM Right Here!

Finding a doctor who knows how to treat chronic fatigue and fibromyalgia is crucial to getting better. Most doctors don't have a clue, so it's helpful to have referrals for doctors in your area. Well, now you can find a good doctor right here on my blog!

With the help of Chronic Fatigue Treatments I have a gadget (sidebar under Helpful Links) that allows you to search a Doctor Database known to treat CFS and FM. How cool is that?

As a relative newcomer to blogging, I signed up for an online class on "How to Blog" at Gotham Writers' Workshop. My instructor gave me feedback on my blog and suggested adding more visual elements such as photos and illustrations. While searching the web for interesting items to spruce up my posts, I came across the Chronic Fatigue Treatments webpage and the Doctor Database. I checked the database for doctors in my area and I recognized several names on the list that are well known for treating these difficult syndromes, so I trust their database.

I hope it helps you find the right medical professional to help you deal with your specialized medical needs!

Saturday, February 26, 2011

The Anxiety Demon

The more I can't sleep, the more anxious I become; the more anxious I become the less I sleep. My therapist likes to take a look at "parts" of ourselves. Such as, part of me is so angry right now I could choke a camel. In the last session, my therapist had me take a look at the part of me that can't sleep. The anxiety came up right away, strangling my heart, closing off my throat and throbbing in my temples. It was rooted so deeply that it was impossible to separate from the rest of me. She asked my anxiety what it was worried would happen to me if it didn't let go. I closed my eyes and listened but didn't hear an answer at that moment. On the ride home, it came to me. Part of me is afraid that if I fall asleep I might not wake up.

When I was a teenager, my big sister was diagnosed with stage four Hodgkin's Lymphoma. She fought the cancer for five years. Toward the end, she was afraid to fall asleep because she knew she might not wake up. Eventually, her fear became a reality and she did not wake. I was devastated when she died and still carry that pain with me.

After facing a potentially life-threatening situation because of the blood clots in my lungs, the Anxiety Demon inside me came to life. It wakes me up every few hours, just to make sure I'm still alive. It's 1:30 a.m. and it wakes me up - yep, she's still alive. It's 3:30 a.m. and it wakes me up again - yep, still alive. And so on, through the night.

My therapist suggested taking an anti-anxiety medication, like Ativan, before bed to help break the cycle. I called my doctor, but she wanted to see me before prescribing any medication, so I set up an appointment at the next available time. She said that there are better medications than Ativan, but wasn't specific. Meanwhile, I tried a supplement that I got from my acupuncturist called Gabatrol for stress, anxiety and depression. It has ingredients like Phenyl-GABA and Kanna to combat stress without the side effects of prescription meds. It seems to have mellowed the Anxiety Demon because it only woke me twice in the night instead of four times. Find out more at

Saturday, February 19, 2011

Forum on Research Linking XMRV to ME/CFS

Another interesting opportunity for those in the Boston area to hear from one of the top researchers in the field, Dr. David Bell. And for those who are not, I will attend Dr. Bell's lecture and report about it on this blog. Here's the 411 from The Massachusetts CFIDS/ME & FM Association: 

Dr. David Bell Lecture
April 16, 2011

Dr. David Bell, noted CFS researcher and clinician, presents "Current Status of XMRV Research and Comments on the (April) NIH [National Institute of Health] State of Knowledge Conference." This event is co-sponsored by the Massachusetts Department of Public Health at the Hinton State Laboratory Institute.
Click here to register for Dr. David Bell Lecture

Dr. Bell will attend The National Institutes of Health State of the Knowledge Conference on ME/CFS on April 7-8, 2011 in Bethesda, MD and report on the conference on April 16 from 1-4 pm at William A. Hinton State Laboratory Institute Auditorium in Jamaica Plain. He will also lecture about the current research regarding the retrovirus XMRV as a possible contributor to ME/CFS.

According to an article on a new study on XMRV shows promise:
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling neurological illness. New study suggests it might be caused by the retrovirus XMRV.
Photo by Dr. David Bell
A new study published in the prestigious journal Science found the retrovirus XMRV (xenotropic murine leukemia virus-related virus) in 67% of patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Only 3.7% of the studied healthy controls harbored this infection. Later, the researchers reported up to 95% of patients test positive with antibody testing.

Saturday, February 12, 2011

Fibromyalgia Symposium

Dr. Don L. Goldenberg
For those of you in the Boston area, one of the top docs in fibromyalgia treatment and research is holding a Fibromyalgia Symposium on Saturday, April 9th.  The Arthritis Foundation New England Region and Dr. Don L. Goldenberg, Chief of Rheumatology and Director of the Arthritis-Fibromyalgia Center at Newton-Wellesley Hospital, are partners for the symposium to be held from 10-1 at the Westin Hotel in Waltham, MA. Dr. Goldenberg was the second doctor I saw after my diagnosis in 1997 and the first doctor to put me on the path toward recovery. This is only the third symposium he's held in the past 20 years, so it's a wonderful opportunity to hear from him on the current treatments and research for future developments in the field. 

For those of you not in the Boston area, I'll be attending the symposium and blog about what I learn afterward. I'll be your eyes and ears, so if there are any questions that you want to find out, let me know ahead of time. And stay tuned for reports from the symposium. 

Thursday, February 10, 2011

To Sleep, Perchance to Dream...

Ay, there's the rub! I'm buzzing along this morning on three and a half hours of sleep. As we all know, sleep disturbances are common in fibromyalgia and good sleep regulation is key to feeling better. Since going on blood thinners a month ago, I haven't been able to use my favorite sleep formula, Rest and Restore, because one of the ingredients interacts with the Coumadin. As a result, I wake up every few hours through out the night - just like having a newborn but without the breastfeeding part.

I'm keeping a sleep diary and I've tried several different strategies, such as taking a timed released Melatonin before bed and not napping during the day. So far, nothing has broken this disturbing sleep pattern. I'm thinking about going back on Nortriptyline which has helped me to regulate sleep in the past. I've also used a good sleep med called Sonata, but it's not something that I want to take on a nightly basis. My rheumatologist suggested doing a sleep study to find out what's really going on. I'm meeting with her tomorrow to talk about next steps.
When I was at the Fibro and Fatigue Center, they put me on a sleep formula called Rest and Restore which you can purchase online. I recommend it for an effective, natural sleep remedy.

Has anyone out there had good luck with sleep aids, sleep meds, sleep studies, etc.? Let us know about it!

Wednesday, February 2, 2011

The Old Man in the Mountain

I hadn't been dreaming much since discovering that I have blood clots in my lungs, going to the hospital via ambulance and starting treatment with blood thinners. I was pretty shaken up by the whole ordeal, so I asked my Dream Source to send me a dream or an image about where I am in my life's journey right now. My Dream Source delivered both a short dream and a quick image that conveyed a message of hope.

In my dream, I saw a large book with a plain cover on top of a pile of clothes in my bedroom. I picked up the book which was filled with blank, lined pages. I realized that it is the Book of Life and that there are many more pages for me to fill. I got the sense that life is a three act play and that I'm still in the middle act. As I turned the pages, there were beautiful, landscape photographs. The one I remember most clearly showed snow covered evergreens on a mountain top. Toward the end of the book was a photograph of the Old Man in the Mountain, and I knew that eventually I will reach old age, but I haven't gotten there yet. I'm still climbing up the mountain.

Then I had a quick image of looking down a very long flight of stairs. The staircase was outdoors with wide, stone steps and landings. Looking down, I could see how far I've come.

The two dreams were like bookends, showing me both the future and the past. I could see how far I've come, but there is more life to live, more laundry left to do! I'm at the end of the middle act of life and there is yet one more act to come. So stay tuned, fellow travelers. Let's climb up the mountain together and see where it leads.