Have you ever had Brain Mist / Fibro Haze or any kind of cognitive brokenness?

Over the year or so this blog has been running there has been quite a bit of interest in the area of brain fog or cognitive dysfunction.  Very common for people with such varying conditions as multiple sclerosis and fibromyalgia!  Also known as the “clouding of consciousness”!

This should give you a good overview of the issues involved.

We thought it would be of value to find out what proportion of our readers have ever suffered from brain fog.  It would be great if you could take the poll below to tell us about yourself.

Feel free to share your brain fog story using the comment box below

Thanks very much in advance.

Have you ever had Brain Mist / Fibro Haze or any kind of cognitive brokenness ?

Fibromyalgia and Genetics! Do other members of your family also have Fibro? Take our poll and share your experiences?

As I’m sure you are aware that many medical conditions, such as cancer or sickle cell anemia, have a genetic component.

On the other hand there are other conditions which may only be genetic in some cases.

What about fibromyalgia?  We thought it would be interesting to find out from our readers if any of their family members have fibro or exhibit symptoms of fibromyalgia without a diagnosis.

Feel free to use the comments box below to add any thoughts you may have on the subject of fibromyalgia and genetics

Many thanks in advance

Do other members of your family have fibromyalgia or show the symptoms of fibromyalgia? click the link for the poll

click the link https://poll.fm/10476931

Getting diagnosed with Fibromyalgia. What tests were used to find out if that you have Fibro?

Welcome to our latest fibromyalgia blog on the subject of your FMS and the tests used for  its diagnosis.

The aim of this blog is to find out more about the experiences (and stories) of people who have been diagnosed with fibromyalgia and their friends and families.

One of the reasons for this is the attitude to Fibro of physicians.   Many people with Fibro will be familiar with the saying “it’s all in the mind” being directed at them by healthcare professionals and friends alike.  Indeed there are still some doctors who say the condition does not actually exist.

We should like to focus therefore on the story of the tests used for diagnosis of fibromyalgia. In particular we are interested in the following questions:-

Firstly, have you actually been diagnosed with fibromyalgia yet?

  • Were you diagnosed by a specialist or primary care physician?  Did you find them sympathetic to the condition?
  • What symptoms did you exhibit before and after diagnosis?
    What was your physicians’ attitude to your symptoms?
  • Were you given a “table tilt test”? What other tests were used?
    How would you like to see the diagnostic process improved?

Finally, if you have any advice for other patients or suggestions as to other resources please do not hesitate to add them to your blog comments.

Thanks very much in advance for your help.

Fibromyalgia – How long did it take you to get a diagnosis of fibromyalgia?

One of the first things I noticed about fibromyalgia was the time it seemed to take for a person to get diagnosed.

We are there for running a poll to try and find out what was the general experience of our readers. The poll is below and it would be great if you could take part.

Please feel free to use the comments box below to share more about your fibromyalgia diagnosis story.  Hopefully other readers will be able to benefit from the knowledge you have picked up during your journey!

https://poll.fm/10476928

Managing Fibromyalgia and Chronic Pain Workshops! A guest post from Melody

This is a guest post from Melody of Only to Be.  Here she tells us about some Fibromyalgia and Chronic Pain workshops she is running

She writes

“Fibromyalgia and Chronic Pain can affect every part of your life; mind, body, and spirit. The treatments and approaches offered by the Medical Community, in most cases, are community based instead of individualized. Lacking and offering little hope of living a full and active life. The life you want.

These workshops were designed for you and what you face daily, by a woman, Melody who has personally experienced what Fibromyalgia and Chronic Pain can throw at you.

These workshops will explore obstacles, practical solutions, provide education and techniques that can reduce the symptoms you experience with Fibromyalgia/Chronic Pain.

WORKSHOP 1 – COMPARISONS AND DECISIONS

Holding on to who you were, should be or want to be can be stopping you. While looking at comparisons, we will also be looking at what your motivation is for the decisions you make.  You will walk out with new ways at looking at yourself and your relationship with your condition and how to make decisions that you are comfortable with and beneficial for YOU.

DATE: WEDNESDAY OCTOBER 30, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 2 – ENERGY PART 1

Defining energy for Fibromyalgia and Chronic Pain, while exploring useable/good and bad energy.  You will learn how to identify your energy level and choose activities that will help instead of hinder you.

DATE: WEDNESDAY NOVEMBER 6, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 3 – ENERGY PART 2

Stabilize your energy level, preventing highs, lows, and flare ups. Increase your energy level and the different methods to do this and supporting tools.

DATE: WEDNESDAY NOVEMBER 13, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 4 – DIET VS. LIFESTYLE

Review the different diets targeting Fibromyalgia /Chronic pain, and foods that feed into Chronic Pain. Healthy choices over deprivation, while providing easy substitutions and realistic options.

DATE: WEDNESDAY NOVEMBER 20, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 5 – SUPPORT & PERCEPTIONS

Addressing and releasing expectations and perceptions, yours/family and friends/societies. Putting in place a support system and plan that opens communication and adds to the foundation of your healing.

DATE: WEDNESDAY NOVEMBER 27, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 6 – EXERCISE

Dispelling the myths and focusing on the importance of exercise. Customizing exercise for where you are and choosing the right form for you (will review the different types that are beneficial for Chronic Pain).

DATE: WEDNESDAY DECEMBER 4, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 7 – THE UNDIAGNOSED

Addressing the misconceptions from those unfamiliar with Fibromyalgia/Chronic Pain. Learn how to educate, receive unwanted advice, and let go of frustrations. Will also review how to attend social events, and interact without your condition being a hindrance.

DATE: WEDNESDAY DECEMBER 11, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 8 – MEDICAL VS. ALTERNATIVE MODALITIES

Learn about what is currently being offered by both sides, and the benefits and downfalls of each. We will review how to approach the medical and alternative communities, and what red flags to watch for, with an understanding that the decision is a personal choice.

DATE: TUESDAY DECEMBER 17, 2013

TIME: 1:00PM TO 2:30PM (EST)

WORKSHOP 9 – EMOTIONAL/SPIRITUAL

Addressing the emotional and spiritual toll that Fibromyalgia/Chronic Pain can take. Providing tools, methods that focus on reducing depression, anxiety, and other negativity you are experiencing.

DATE: WEDNESDAY DECEMBER 18, 2013

TIME: 1:00PM TO 2:30PM (EST)

IF UNABLE TO ATTEND THE EVENT AT THE “LIVE” TIME YOU WILL BE EMAILED A LINK TO LISTEN TO THE WORKSHOP AT YOUR CONVENIENCE. AFTER EACH WORKSHOP YOU WILL BE EMAILED WORKSHEETS, AND INFORMATION OF WHAT WILL BE COVERED IN THE WORKSHOP.

COST: $15/SESSION

$90 FOR ALL 9 WORKSHOP IF PAID IN FULL BEFORE THE START OF THE FIRST WORKSHOP.

IF FINANCES ARE A CONCERN PLEASE CONTACT ME.

(IF YOU PURCHASE ALL 9 WORKSHOPS YOU WILL RECEIVE 1 30MINUTE SESSION WITH MELODY AND EMAIL CORRESPONDENCE BETWEEN THE WORKSHOPS)

TO RESERVE YOUR SPOT PLEASE VISIT HTTP://ONLYTOBE.WORDPRESS.COM/UPCOMING-EVENTS/

Fibromyalgia – What are your main Fibro symptoms? #fibromyagia

Different people with fibro have , of course, different symptoms.  The objective of this blog post is to give our readers the opportunity to share their symptoms with others.  To achieve this we have set up a poll which we would love you to take part in.  You will find the poll below.

Please make use of the comments box below to share any aspect of your fibromyalgia journey which you think may be of use to others.

Thanks very much in advance

Fibromyalgia – what treatments do you use for your fibromyalgia? Take our poll

Fibromyalgia – what treatments do you use for your fibromyalgia? Take our poll.

https://poll.fm/10476901

If you have any comments on your medications please feel free share more information in the comments boxes below

Fibromyalgia – How easy was it to get diagnosed with 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.

Debunking Diet Myths – Can Do MS and National MS Society Webinar Series

Presenters: Mona Bostick, RDN, CSO, LDN – Registered Dietitian Kate Fitzgerald, ScD. – Nutritional Epidemiologist Two renowned experts on MS and nutrition will discuss the science behind several common “diet fads,” provide background on the latest research linking diet & MS, and provide practical, fact-driven tips to make food choices that can improve your overall health.

Autism and Genetics – Please take our poll about family and Autism inheritance

Thanks for dropping round to our latest autism blog.

Over the last few years quite a lot of work has been done exploring the idea that autism may be an inherited medical condition. Indeed having more than one sibling with autism turns out not to be as uncommon as once thought.

Indeed not just is our son autistic but so is one of his cousins in Australia.

So, of course, I’m very interested to see if this is reflected in the experiences of our readers. Is there more than one person in your family diagnosed with autism? Or deso more than one person show autistic traits? Both are the case in my family as delayed speech is very common.

It would be great if you could take our poll below. Feel free to use the comments box to add any more thoughts you may have on autism and genetics.