MONTHLY MUSINGS

Your profile is what makes PatientsLikeMe work.  Stuck at one or two stars?  Check out this helpful guide to completing your profile, earning three stars and requesting your free t-shirt.  (That’s right – all three-star members get their very own PatientsLikeMe t-shirt!)

How can you record your experiences beyond your profile?  Start a journal thread!  For example, SongSparrow has been keeping a journal in the forum for over a year.  Take a peek at this in-depth chronicle of her fibromyalgia experience and see what valuable insights she has gained.  You can also browse all FM/CFS forum journals here.

Enjoy the end of summer, and when you have time to relax, join us for some lighthearted banter in our group happy hour thread.  See you there!

--Elizabeth Morgan, Community Manager

JOIN THE CONVERSATION

Check out some of the hot topics in the forum.  Then jump in with your own questions and answers!

How weather affects fibromyalgia
Have you noticed that certain weather patterns correlate with increased symptoms?  Discuss why barometric pressure, temperature and humidity may influence FM.

Folk remedies for common ailments
Here is a long-running thread that keeps picking up steam.  Learn what foods and herbs members take for an upset stomach, hiccups, colds, allergies, insomnia and much more. 

What’s your expertise?
Tap into the vast knowledge in our community – and share your own.  Find out who you can go to about depression, the Family Medical Leave Act, quitting smoking and more.

New doctor, new hope
How has your relationship with your doctor affected you?  Read about vbjess’s first appointment with a naturopath and discuss the importance of finding the right doctor.

GETTING TO KNOW YOU

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview patients each month to find out more about how they approach life.  This month we are pleased to feature emitchell, a three-star member from Jacksonville, Florida, and phnx3, a three-star member from Albury, NSW, Australia.

INTERVIEW ONE:  EMITCHELL

1.  Describe your favorite moment from this summer.

I know that living with the diagnosis of Systemic Lupus (SLE), CFS and Fibromyalgia can be difficult, but you can still have a life. For instance, my favorite moment from this summer would be one day that I decided to keep my children home with me. I was able to grill out and let them play in the yard with water guns and the slip and slide. Just to have my children happy for a day was worth a thousand bad days!

2.  How have you changed for the better since your diagnosis?

Since my diagnosis, everything has changed. Being able to give my children a simple outside day is a major accomplishment. My life has changed drastically.

Because of the diagnosis, I am no longer a career woman. Due to my chronic fatigue and pain, I couldn't hold down my job that I loved in the transportation industry. My social life has fizzled out, either because I am afraid to commit to engagements or I just downright don't feel like it. I have to keep a tight schedule between doctor’s visits and medicines, while trying not to let my children in on mommy's pain.  

I do have bouts of depression...who wouldn't? I also have moments where I realize that I have strength enough to be considered a SUPERWOMAN. I embrace my weakness and my strengths. I've learned that life is precious and can change with one simple blood test!

3.  Tell us something that people may not know about you.

There is one thing about me that people don't know. I love to write and want to write a book on anything. I don't mind that I have plenty of material to go off of based solely off of the sum of my life experiences.

4.  What does it take to maintain three-star status – and why do you do it?

To maintain a three-star-status, I have to check in weekly, sometimes daily, to monitor my symptoms, treatments, and to compare them to previous years, months, even days. I maintain my profile because I have lost quite a bit of my cognitive ability. My mind might slip, but the records that I have on PatientsLikeMe never do.

I also use the profile to take to my team of doctors so that they can keep a record of my flare-ups. This helps them determine what's working and what doesn't. I love this site, it's a Godsend. The community is awesome, and it's just great to know that I am not alone in this.  I'm glad to know that there are patients just like me and that they are looking for the same things:  compassion, relief, reputable research and information, and someone to relate to their plight.  

INTERVIEW TWO:  PHNX3

1.  Describe your favorite moment from this summer.

It's been a pretty cold, tough winter for me here in Australia. However, the most positive thing that stands out for me would be "meditation.” As my physical function has become more and more limited, I have found this one "rheumatologist recommended" action more and more attractive.  

I use the Transcendental Meditation technique after reading verifiable research results indicating positive benefit for both mental and physical function.  It entails a 20-minute session in the morning and again in the afternoon.  I have been using it fairly consistently for 18 months now, and overall I can definitely observe that it has stabilized my mood and even increased my sense of humor perhaps!  Plus, given just how frustratingly disappointing all my other attempts at improving my health have been, I think I could have become "majorly depressed" by now without it.

2.  How have you changed for the better since your diagnosis?

Unfortunately, I can't observe that I have changed for the better at all since my diagnosis two years ago.  However, I did experience a bounce in my health when I adopted a gluten-free and dairy-free diet eight months ago. I was really hopeful that it may have been a more permanent result, but three months ago my health started a decline that it has not rallied back from.

3.  Tell us something that people may not know about you. 

I feel that my symptoms of FM/CFS are most probably attributable to the major emotional stress that I experienced as an infant and young child.  I have read a few research study results indicating this correlation. 

After years of illness and trying to remedy it, I have come to trust ONLY in the results of verifiable studies!  There are just way too many unverified so-called "cures" for chronic illnesses such as FM/CFS, and I certainly do not have enough money or "hope" to indulge in them!  Plus I do believe the "Placebo Effect" could account for many glowing testimonials as this has also now been found by studies to be a verifiable effect of the mind upon the body - the only difference from being an actual "cure" being that it is not permanent with maximum effect being maintained for only a few months.

And my experience of FM does not seem to include the high levels of pain that I hear of so many others' suffering. Although I do, of course, have ALL the very, very tender points! But fatigue and brain fog are my biggest handicaps.  Plus even though having been tried on just about every antidepressant ever invented (over the past 17 years), my body cannot tolerate any of them for very long at all. The only pharmaceutical drug that is of any use to me is Valium.

4.  What does it take to maintain three-star status – and why do you do it?

Having been a member of PatientsLikeMe for two years now, it has become a regular "log" for my experience of FM.  I find it helps clarify just what is happening for me. Plus I also enjoy knowing that any info I can share may also contribute to a larger understanding of FM in the long term.

WHAT’S NEW AT PATIENTSLIKEME

• Ready to shout from the mountaintops about PatientsLikeMe?  We’re ready to support you in that effort!  All of our community-specific slidedecks have now been updated.  Break out an engaging visual slideshow at your next support group meeting and then pass out our one-page flyer as well as your PatientsLikeMe member business cards afterwards.  Visit our Tell the World page to get your hands on these helpful materials today.

• As summer turns to fall, many disease-related walk/run events are gearing up.  If you’re organizing a team and starting your fundraising efforts, don’t forget about the PatientsLikeMeInMotion™ sponsorship program.  (See photos of previous teams here.)  All you need is three-star status, and we’ll sponsor your team with a monetary donation and official PatientsLikeMeInMotion™ t-shirts.  (Please allow 3-4 weeks lead time.)  Learn more here.

• Like to read scholarly articles?  We often highlight our media mentions in The New York Times and other consumer publications, but we also are quite proud of the academic recognition we get each year.  Follow the published research of our staff as well as other scientific citations for PatientsLikeMe via Google Scholar.

THIS MONTH’S SITE IMPROVEMENTS

We are constantly working to improve our site.  In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better. 

Here is our top functionality enhancement for August:

• Notice anything different about your profile charts?  The Fibromyalgia and Chronic Fatigue Syndrome Community now has easier-to-use and more flexible charts for your PFRS, treatments and more.  Want to focus on a specific time period?  Simply use the blue arrows at the top of the charts to change or narrow the dates.  There is also now a timeline that marks when a member joined PatientsLikeMe.  Share your feedback here.