cfs

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Fibromyalgia and Chronic Fatigue Syndrome – Is there a connection? Take our updated poll

Fatigue

Fatigue

Sounds an odd question given that fatigue is one of the severest symptoms of fibromyalgia.

In fact today we are looking at it from another way and would love your help.

The objective of this blog post is explore not fatigue as simply a symptom of fibro but to find out how many people suffer from Chronic Fatigue Syndrome (and/or Myalgic Encephalomyelitis).

There seems to be three schools of thought from healthcare professionals. A small minority ( and thankfully getting smaller) who do not think either condition exists. A group who believe that in fact they are exactly the same and yet another who will accepting similar symptoms think they are separate medical conditions.

And fibro is seen as pain based while CFS looks at fatigue.

That being said there is a huge amount of social media output which links CFS and Fibromyalgia. So I have a question for my readers. How many of you have who have been diagnosed with one of the conditions have also been diagnosed with the other?

To help us find out more please take part in the poll below.

Obviously straight diagnostic reporting does not give us the entire picture so please share anything you think would be of interest with our readers in the comments section below. For example if you are a person with fibro do you think your symptoms also match say Myalgic Encephalomyelitis but have not been diagnosed etc.

Everything you have to say if of great interest to please do take part.

Many thanks in advance!


3 Comments Posted on Fatigue, Fibromyalgia, medical awareness

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – Please like and share Donnee Spencer’s brilliant awareness butterfly

As many of you know over the last few years Donnee Spencer has been producing a series of brilliant medical condition awareness butterflies. You can see more of her work here.

ME CFS myalgic encephalomyelitis Chronic fatigue syndrome

ME/CFS Myalgic Encephalomyelitis/ Chronic fatigue syndrome

She has very graciously given us permission to reproduce them on the blog.

Today we would like to share her ME/CFS awareness butterfly. Often associated with Fibromyalgia we would be honoured if you would like and share with other members of the fatigue community.

Many thanks.

Leave a comment Posted on Fatigue, Fibromyalgia

ME Awareness Week 2014 – Please like and share this page to help spread awareness of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS)


ME awareness week

ME awareness week

Many of us around my age can remember the term “yuppie flu” from the eighties. In fact for many of us this was the first time many of us came across the medical condition ME or Myalgic Encephalomyelitis. Also called CFS or Chronic fatigue Syndrome.  It also is a common partner of fibromyalgia.

This week is dedicated to raising our awareness of ME and the excellent work conducted by Action for M.E.

They have produced the brilliant graphic above which we would love if you could like and share to show your support for the week and the need to spread CFS awareness.

On their excellent web site’s (and you can’t say that about many medical sites) media center they have written this great introduction to M.E. which we have reproduced. The links are to their site so we can recommend them.


 

10 key facts

1. M.E. (Myalgic Encephalomyelitis) is a chronic fluctuating illness, also known as Chronic Fatigue Syndrome (CFS or CFS/ME). It is sometimes diagnosed as Post-Viral Fatigue Syndrome (PVFS).

2. M.E. affects around 250,000 (1 in 250) people in the UK, including men, women and children of all social/ ethnic backgrounds. The youngest person diagnosed in the UK became ill aged two. As many as 25,000 young people and children may have M.E.

3. Our Time for Action campaign, launched in February 2012, is fighting to end the ignorance, injustice and neglect of M.E., once and for all.

4. The National Institute for Health and Clinical Excellence (NICE) guideline on the treatment and management of CFS/ME (2007) acknowledges that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis and congestive heart failure.

5. Symptoms vary from person to person but may include persistent exhaustion (‘fatigue’), muscle and/or joint pain, sleep disturbance, headache, sore throat, painful lymph nodes, dizziness and/or nausea and problems with memory and concentration.

6. The article, How common is M.E., by Professor Derek Pheby, discusses the prevalence of the illness.

7. The cause of M.E. is unknown but certain viral infections are thought to be among the potential triggers.

8. M.E. is a long term illness. Most people with M.E. will improve over time and resume normal activities but not everyone recovers to pre-illness level. Others continue to experience symptoms or relapse and some people with severe M.E. may remain housebound for many years.

9. Our 2006 survey, M.E. more than you know, showed that 77% of people with M.E. lose their jobs because of the illness. Other key facts may be found in our Election manifesto for M.E. (2010), Scottish election manifesto for M.E. (2011) and consultation reports, M.E. 2008: what progress?, No one written off (work and welfare reform 2009) and Future of care(2009).

10. International M.E. Awareness Month, Week and Day focus on 12 May, the date of Florence Nightingale’s birthday.

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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”


32 Comments Posted on Fibromyalgia

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.