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.

A survey for parents of ASD children. Drop round and find out more about this important research!

Laura Czekirda of Northumberland University is conducting some research into parents of children with autism! Czekirda says “I am currently recruiting participants for my study which is for my dissertation. I am recruiting parents who have a child with autism 3-19 years old to assess the affect locus of control has on their health and well-being.

I am recruiting for my study which involves assessing the psychological and health correlates of locus of control, the feeling that you are in control of your life in parents of children with Autism or Down syndrome, and parents of typically developing children.

This study and all its procedures have been approved by the Faculty of Health and Life Sciences Ethics Committee at Northumbria University.
Please forward this to your friends. Your contribution to this extremely worthwhile project is gratefully received.”

If you have any questions about the study please use the comments box and we will ask Ms Czekirda to respond.

Autism and Education Part Two – Compromise or Half Way House? Our Autistic son’s educational journey explained. What is your child’s journey!

Sorry about the odd title but this is one of those opportunities to write a more personal blog about autism than usual.

As you may know we have a seven year old son who was diagnosed just over four years ago with what can be described as classic autism. Pretty much since the day of his diagnosis on 1st September 2009 (around 11.00am) (yes I do remember without having to look it up) he has been in the education system here in London, England.

Just before his third birthday (I should mention that he showed serious regression around his second birthday) he entered a kindergarten/nursery which catered for pre-schoolers with autism. What was novel, at least for me, was the nursery was part of a mainstream school. Referred to as a ResourceBase it provided a specialist autism unit which existed within and was supported by the mainstream primary school.

The hope was that pupils in the unit would move on at the ages of 4-5 to a mainstream school, having been provided with the tools to be able to cope in such an environment.

Our son, after two years at the unit, progressed to our local primary school. The first year, we all felt, was a success for him and the school. However, he experienced a great deal of difficulty at the age of 5-6 dealing with the more formal instruction provided by the school after the initial year. I have to say here that both his teachers and his support workers were absolutely brilliant but it was felt, and we agreed, in the short to medium term that our son would benefit from more specialised support.

So you can imagine our delight when we found out that another school in the areas was providing the same ResourceBase education. This time for children aged 4-11. After a certain amount of waiting around he was offered a place. The key thing about this approach to educating ASD children is that, while they are based in a specialist unit, around 50% of their time is spent in mainstream classes with their own age group.

While the transition from mainstream to specialist unit has been hard, (he hates changes in routine!) we have found, two and a half months in, that we now see some real improvements.

Firstly he no longer cries when he has to go to school. Yes, a bit of complaining but nothing like the previous school. Secondly he is starting slowly to make some advances in academic work. Indeed this morning on the way to school he asked me how various words were spelt. You cannot imagine my delight – this has never happened before. Unless you count his discussion about numbers yesterday afternoon.

That being said, making friends still seems to be hard. He does seem to prefer the company of neurotypical children.

So, all in all, for our son the middle path between mainstream and specialist school seems to work.

So what about you? I’d be really interested in finding out a bit more about how our readers with autistic children have fared in the education system. You may wish to think about it in terms of the following questions:

a) What was the exact diagnosis of your child and at what age were they diagnosed?

b) How would you describe their overall profile in terms of behaviour and cognition? What are their biggest challenges?

c) What sort of education have they received? Do you follow any particular strategies both at home and at school?

d) Have they changed schools during their education because of their ASD? Please tell us how this transition has worked out.

e) How would you, in a perfect world, have had your child educated?

f) What advice about education would you give to somebody who has just has their child diagnosed with autism?

Autism – What therapies have you used for youself or your child?

The word AUTISM spelled out over blank puzzle pieces.

As you know there are a number of different therapies for autism available.

The purpose of this blog post is to find out which treatments and therapies or readers have used.

It would be great if you take the poll below.

But as importantly it would be great if you could use the comment boxes below to share your views about the effectiveness of the treatments you have used

Many thanks in advance

https://poll.fm/10475733

Continue reading Autism – What therapies have you used for youself or your child?