Chronic Fatigue Syndrome and Fibromyalgia Blog: Check out our guest post from Bea Scherfel where she tells about her diagnosis and her Fibro blog


Fibromyalgia

Fibromyalgia

Welcome to the latest in our series of guest blogs.  Today Bea Scherfel introduces us to her blog about her diagnosis of Chronic Fatigue Syndrome and Fibromyalgia.  Please do check out her blog at  http://beascherfel.blogspot.com.

If you have a blog you would like us to promote please get in touch by emailing us at patienttalkblog@gmail.com

“I am 34 Years Old.  I suffered with a lot of “Symptoms” for years.  About two years ago, I was able to finally get a diagnosis of “Chronic Fatigue Syndrome (CFS)”.  I was on different medicines for Migraines, Depression, Anxiety, Energy….Test result after test result came back “Negative” and, in January 2013 I was finally diagnosed with “Fibromyalgia” as well.  I don’t say “Finally” because these illnesses are fun to have…or because we love the symptoms…”Finally” is said out of relief of knowing “There Is Something Wrong”…so many years of seeing doctor after doctor and hearing doctor after doctor tell you “You’re lazy…You’re fat…You’re not a baby…”  Yes, I had doctors say each and every one of those to me.  So, yes, it was “Finally Nice to Have a Diagnosis and Know That I WASN’T JUST Lazy or Fat or Think I Was a Baby”…The pain, fatigue, lack of coordination, not having hands, feet, legs, and arms do what you want them to, memory problems, and the mental affect that come with these “Chronic Illnesses”, you could never understand until you go through them.  While I have finally been able to find relief, I still have bad days.  I recently started a blog which has helped me a lot “Mentally”…I may write on articles I’ve read, my own experiences, the conditions themselves, or just how I’m feeling at the moment.  I am open to Support, Comments, & Suggestions…       http://beascherfel.blogspot.com


Fibromyalgia Awareness Week 2013 – Please share this graphic

This week is Fibromyalgia Awareness Week.

Please share this graphic to help us raise awareness of fibromyalgia.

For more information on on fibro and chronic fatigue syndrome please join our Facebook group https://www.facebook.com/FibromyalgiaandCFSTalk

Fibromyalgia Awareness Week

Fibromyalgia Awareness Week

 


Guest Fibromyalgia Blog – Fibromyalgia Healing Retreat November 18-24, 2013

Fibromyalgia

Fibromyalgia

We have been asked to post this as a guest blog for our readers.  If you have any queries please use the comments box below and we will ask the people behind the retreat to answer on the blog!

 

 

 

 

Retreat Flyer

Update

 

Day 1 – Welcome Ceremony and Dinner – Connect with others in the group.
Day 2 – FMS/CFS Basics – Learn all about your syndrome and what your doctors didn’t tell you!
Day 3 – Fibro Flares – How to treat and avoid them.
Massage Samples: A massage therapist will demonstrate various types of bodywork that you
can experience.
Day 4 – Treatment Part I – Sleep, fatigue, pain.
Day 5 – Treatment Part II- Stress Management.
Day 6 – Nutritional & Exercise Guidance – Individualized programs. Get in shape & lose weight.
Day 7 – Farewell Ceremony Breakfast
Daily Afternoon Activities:
– Questions and Answers with Dr. Metro.
– Explore Maui on your own
– Facials and Aromatherapy Massage
– Personalized Yoga and Meditation
– Pool sessions
– Jacuzzi
Additional Information:
Each participant will have private accommodations.
Daily yoga and meditation included.
Available, but not included will be consultations with Dr. Metro by appointment prior to retreat.
Also available but not included: Lomi Lomi and other massage therapies, Aromatherapy, Cranial Sacral Therapy and Personalized Yoga.
Daily breakfast, lunch and dinner are served and many of the ingredients are organic from the garden to the table. They are healthy and visually attractive chef prepared meals always including vegan or vegetarian options. With vegetable and fruit juices, this is a great opportunity to get a head start for both a healing, cleansing fibromyalgia diet and a new healthier you.

Fibromyalgia – How easy was it to get diagnosed with Fibromyalgia?

Fibromyalgia

Fibromyalgia

Having been involved in researching different medical conditions for nearly 8 years we thought it would be interesting and important to find out how things have changed over the years.  In particular we were concerned about the ease or difficulty in getting diagnosed with fibromyalgia.

Our research painted a very unhappy picture.  In many cases a diagnosis of Fibromyalgia took years.  In some very worrying cases a number healthcare professionals refused to accept the existence of the Fibro.  So for many people fibro was an invisible illness, both medically and socially.

So our main interest was to what extent has this situation changed as regards to people suffering from fibro.  As we run a Facebook group providing support for people with fibro and Chronic Fatigue Syndrome we decided to ask our members that very simple question “How easy was it to get diagnosed with Fibromyalgia?”.  To check the page out please go to https://www.facebook.com/FibromyalgiaandCFSTalk

I have to say the results were over whelming with over 150 responses in less than 12 hours.  Here are a few of the responses.  One of our members related:

“Oh it was hard…….doctors didn’t believe me….I had an op on my hip, which led to nothing, 15yrs approx later. ( maybe more) .diagnosed with m.e & fibromyalgia”

While another commented:

“I was fortunate… My neighbor has fibro and I was experiencing all the same aches,pains, symptoms as her, she urged me to go to her rheumatologist. That’s when I was officially diagnosed. It was a long road prior to that… Going from doctor to doctor, repeated blood work…tests tests and more tests…. All I heard was your fine… There’s nothing wrong. Thank goodness for my neighbor who helped me!!!”

And maybe there are still issues with the medical profession. As one  reader shared:

“Even now doctors donot believe in Fibromyalgia or dont know much about it…A very senior doctor told me its another fashionable tag given to arthritis…Mostly I did my research on net. ..Recently i went to a rheumatoloy clinin who agreed it was either fibro or CFS..Its frustratinf when people around you are so ill informed about your suffering and ill ness..”

But there are positive signs as one commenter said:

“I was lucky that I had a good family doc that knew the right specialists to send me to. I think he did his homework actually and when I started to get worse, he sent me to those specialists cuz I only had the waiting time to get in to see the specialist until I had a diagnosis. That was about a month.”

So it seems that while there are signs that it is getting easier to be diagnosed with fibromyalgia but the overall situation is still not great.  The aim of this blog is to get your take on the issue.  We would like you to answer that very simple question “How easy was it to get diagnosed with Fibromyalgia?”.

You may also want to consider some of the following questions as well:-

  • Did you have problems with healthcare professionals in getting a diagnosis?
  • How long did the diagnosis take?
  • What tests were used to get your diagnosis?

Feel free to use the comments box to answer these questions and add any other opinions which you think may be of interest to other people with fibro.  If you have any useful links please do include them.