diagnosis of fibromyalgia

Leave a comment Posted on Patient Talk

Living with Fibromyalgia – Living without Medication: A guest post by Alison Lang Pereira Fernandes

Life After Fibromyalgia

Life After Fibromyalgia

Welcome to the latest in our series of occasional guest post. Today Alison Lang Pereira Fernandes tells us about her fibromyalgia story.

Ask anyone with fibromyalgia about their condition and you will almost certainly be painted a depressing and bleak picture about the pain and other unpleasant symptoms which they live with on a daily basis. Statistically, there are over three quarters of a million people in the UK and between 3-6 million in the USA who have the condition. They live with a combination of symptoms which others often find difficult to appreciate or understand and face an almost inevitable loss of quality of life. Many sufferers encounter lack of understanding and sometimes disbelief from people around them, adding to their sense of isolation and hopelessness.

In February 2009 I joined those statistics when I was diagnosed by a consultant rheumatologist with the illness. At that time I had little idea what the implications were of the syndrome or of the way it was to affect my life.

The first major shift came the day after my diagnosis, when my live in boyfriend moved out while I was at work. I was on my own with this, having no family close by; and a very limited circle of friends due to having been overseas for almost ten years, before moving back to the UK to an area I didn’t know.

Despite having been given the impression by the doctors early on that fibromyalgia was a transient condition from which I could expect to recover, I found myself affected by worsening symptoms and a range of medication which, although it had some beneficial effect on the pain, muscle spasms and headaches, had a range of side effects which were harmful to health. Episodes where one or more of my limbs would go into spasms lasting anything up to half an hour were not uncommon; I was almost unable to climb stairs; became dizzy and breathless; unable to concentrate or remember things; had trouble swallowing and sleeping; and could only walk a short distance before my pain levels rose too far and I had to stop to rest. I was sensitive to noise and light and suffered from depression.

By mid-2011 I had lost my job; I had been forced to stop studying for a science degree with the Open University because I was unable to meet the curriculum requirements and had little or no prospect of recovery. I had faced the probability that my fibromyalgia was with me for life; and that the medical profession were apparently unable either to identify the cause of the condition or to offer hope of recovery.

Although I could see no way forward, a part of me refused to give up. If there was a way of curing fibromyalgia I was determined to find it. Throughout my illness I had trawled the internet, chasing every possible clue; none seemed to lead to a definitive path out of my situation. A chance question aimed at my consultant during a hospital appointment gave me something to research. I began to look at the biochemical implications of fibromyalgia and reached a conclusion which led me to change the way in which I treated my illness.

Since New Year 2012, I have been on the road to recovery. I do not say a cure, but I am able to live without medication, thanks to my discovery. Nearly two years later I am virtually symptom and pain free; able to exercise and do many things which I had been unable to while ill; and I want to share what I have found out with others. I have written a short book outlining my journey to recovery in the hope that other people with the condition will find, like I did, that it is possible to regain quality of life, to come off medication and to look forward to the future again. My book is available on CreateSpace in the States and on Amazon in the UK and Europe and is called Life after Fibromyalgia (A Personal Journey to Recovery).

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.