Sometimes, people simply ask, "So what is the disease you have? What is it like?"
A major population has never even heard the word Fibromyalgia. So I explain the condition depending on the person who I need to tell. The simplest things I use depending on the time and relationship with the person include:
There's no doubt that the medication for fibromyalgia is pretty strong. But there comes a point in your life when you don't just wish to but have to go off medication for few months or years. Take for example planning pregnancy. One needs to stop all medication a few months before even planning.
Meet Linda Carrol Crowder from Texas, USA, who was diagnosed with fibromyalgia 24 years ago. Her story bright tears in my eyes. It is full of hope, the importance of support of friends, the importance of a god doctor and above all, the will to fight the condition regardless of the hurdles life may throw at you.
Meet Ann Kirk from Mesa, AZ, US who was misdiagnosed for six years. She has fibromyalgia along with many other medical conditions ranging from allergies to IBS and Carpal Tunnel Syndrome. Do read her interview as she talks about her journey with fibromyalgia. Age: 34 Location: (City / State / Country): Mesa, AZ, US Occupation: Student / Homemaker Year when symptoms started: 2007 Diagnosed in: 2013 Marital Status: Married
Meet Keri Seitz from WA, USA. Keri suffers from Fibromyalgia but has not let it take the best of her. Her advice to patients as well as doctors really makes a lot of sense. Do read her interview as she talks about pain, limitations, energy boxes and doctors.
Age: 52 Location: (City / State / Country): WA, USA Occupation: Was a medical transcriptionist, now disabled
Year when symptoms started: 2004
Diagnosed in: 2008
Marital Status: Separated
What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?
had a bad flu. Took me three months to fully recover from it. At the
time, I was caring for my mom, who was in a nursing home after having a
surgery complicated by a staph infection. I went to my family doctor,
who thought I might have depression with pain. I tried various OTC
medications, but the pain levels kept climbing despite trying everything
available for pain. I thought I was crazy and just went with the idea
that depression was causing me to be in pain. At some point, I realized
that the pain was different. I started to recognize flare ups versus arthritis pain. I developed a host of new symptoms, stomach problems, etc.
Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients from across the world. Every patient's story is a source of learning and inspiration. These stories serve many purposes like helping us understand the condition and symptoms better, helping people with similar symptoms get diagnosed in time, finding tips that work and making the 'Invisible Illness' visible so that sufferers are saved from the stress of making people understand that they really are unwell.
Meet Grace Simpson from Richmond, VA, USA.
She has been very kind to join us in our mission to raise awareness about Fibromyalgia and we thank her for participating in the interview.
Age: 26 (as on August 2013)
Location: Richmond, VA, USA
Occupation: Data entry & management
Kind of occupation: Part time
Year when symptoms started: 1990
Diagnosed in: 1993
Marital Status: Live-in
Explaining Fibromyalgia to people is one of the toughest tasks for a person suffering from the condition. The answer to the question, "So what do you go through when you have fibromyalgia?" is quite extensive and patients find it strange to go on and on with the umpteen problems they face.
The biggest hurdle is the fact that people with fibromyalgia do not look sick. We are trying here to make it easier for people to explain and understand the symptoms in a non-medical language.
Please view our Fibromyalgia Awareness Video on Daily Symptoms that has been created out of our most effective poster.
Please SHARE to help us spread the word.
Have you Liked our Fibromyalgia Awareness Facebook page yet? Do join us today and help us raise awareness!
With fibromyalgia, it is really tough to do several tasks, forget multitasking. But there are times when you simply have everything on your plate. What to do when you have to do it all?
KEEP OTHERS INFORMED: So first and foremost, ensure that you let your family and friends or even colleagues know your situation. If they already know your limitations with fibromyalgia, they will understand how overexerting increases your fatigue, pain and other symptoms. If not, there is nothing wrong in letting them know.
MOVE IT: Next, while you are in the multitasking phase, try not to stay in the same position for long. If you are cooking a meal for many guests, try to sit while chopping the veggies as you might be standing a long while cooking. If you are travelling and need to walk a lot or maybe trek, remember to sit for a few minutes at intervals. I will try and give specific examples in the upcoming posts.
TAKE A BREAK: More importantly, plan a break after the completion of the do-it-all phase. Maybe you have many guests coming to stay overnight or maybe you are juggling with deadlines and managing kids, try to take a day or two off. Otherwise, you might just end up worsening your symptoms and increasing your medications.
'WEATHER' YOU LIKE IT OR NOT: Also, keep the climate in consideration. If your bothered by hot summers, try these tips. If you need to deal with people who only give you unnecessary stress, here's what to do.
All in all, just listen to your body and take it easy!
Fibromyalgia - The disease your doctor might miss.
Dr Oz spoke with Dr Jennifer Caudle and Dr Sean Mackeyabout Fibromyalgia in the 23rd July 2013 episode of Dr Oz Show. I present here the links to the episode and also some excerpts and highlights for those who are unable to view the video. I encourage you to share this link to help patients across the world.
Millions across the world suffer with fibromyalgia and yet there is a lot of misdiagnosis and ignorance. Patients go through a lot of physical and emotional pain caused by this invisible illness. We are thankful to these three doctors for bringing this condition in light and breaking many perceptions. Here are some of the highlights of the show followed by the video links to this episode on fibromyalgia.
with Fibromyalgia Syndrome (FMS) can be frustrating given the umpteen symptoms
and side effects of strong medicines. But what hurts fibromyalgia
patients more than anything else is the indifference they face from
family, friends and colleagues. And I am not saying this based solely
on my experience, for which I have so many examples that I can compile a
book if I can remember them all! This is the voice of over 2000 people
on the Facebook page of this blog.
The irony of 'close' relations is what hurts more than Fibromyalgia. So they know you cannot do various things when you have Fibromyalgia
but they will never acknowledge it so that you keep doing the household
chores and other work. And they will never ask 'how are you feeling
today' and if you ever mention that, they will only say, 'I know you are
hurting all the time'!
Fibromyalgia Awareness Day is observed on May 12 every year. Unfortunately, still a major population is unaware about the debilitating condition. The first proof is that many do not even know how to pronounce the word!
As a result, two things happen:
Many people with the condition go undiagnosed.
People who do not have the condition never understand the person with fibromyalgia. This adds to the stress which eventually worsens the condition of the sufferer even more.
There is no established cure for this Invisible Illness as yet. So this year, let's take some time to understand and make others understand what Fibromyalgia is all about.
If you wish to support us in this cause, you can help generate awareness in one / all of the following ways:
We recently had a contest to raise Fibromyalgia Awareness on our Facebook Page. We are glad to see the participation and the awesome entries from our fans. We take this opportunity to thank the participants for their efforts... it means a lot! I would like to thank Trayce Duffy in particular for initiating and managing the Fibromyalgia Awareness Photo & Poem Contest. She has been a great help to us ever since she joined our page and I can't thank her enough.
So who is joining us as FAVolunteers? A
campaign to raise awareness about Fibromyalgia and what the patients go
through? All you need to do is share info about FMS on facebook at a
time of your convenience.We will keep you posted about the activities. If you are already on our Facebook page, you know how to go about it. If you are new here, please Like our Facebook page (https://www.facebook.com/fibromyalgiaawarenesspage) and we can kepe you posted. Also, you can share our links on your page. Wish to volunteer? Comment here "I want to be a FAVolunteer.” LIKE and SHARE so that more and more of us can do something for this cause. Please do. Take care. -Anuradha