Fibromyalgia Awareness | Information, Tips, Support, Patient Stories

Dedicated to raise awareness about Fibromyalgia and offer online support. Find fibromyalgia information, news, interviews and tips.

Fibromyalgia Warrior Desiree Robinson's Interview and her Fibromyalgia Video

Support of spouse, family and friends makes a whole lot of difference when it comes to dealing with chronic illness. Here's the story / interview of fibromyalgia warrior  Desiree Robinson who put her creativity skills and photography together to bring awareness about the condition with a video. Please read and share her story and the video to help her in her initiative.

Broken but determined

Came across this pretty butterfly with a broken wing yesterday. It was a delight to watch it as it seemed to say "My wings might be broken, but they won’t break me!"
Yes, we won't be able to fly much with ‪#‎fibromyalgia‬, but we'll make the most of life with a smile on our face!

Fibromyalgia Guest Post by Louise Willis

Hi Fibro-Folks 
Always wanted to set up a Blog but don't know how - so guest Blogging looks like a first step.

Let me tell you about me - I'm 47 - female and wheelchair bound. Married with two doggies.
I have the condition called Fibromyalgia. The way it's been described to me is my brain fails to process pain signals in the same way as others. This means I suffer pain on a daily basis (so does my husband- but that's marriage!!)

Fibromyalgia Awareness Guest Blog Posts

Fibromyalgia, that affects millions worldwide, still lacks awareness. This leads to fibromyalgia patients, rightly called as fibromyalgia warriors, fighting not just the illness but also the ignorance and indifference. The lack of awareness is adversely impacting the lives of patients worldwide, especially in countries like India where most people have not even heard the name of the invisible illness!

Caring for the Caretakers

For all those who have a chronic illness and a supportive partner, family or friend:

Remember, they are doing their best to help you. So they are doing more than what the partners, families and friends of healthy people are doing. Most of the times they don't say it. But remember, they are exerted too. Coz seeing a loved one in pain that will not go away is very disturbing. Also, doing additional amount of work to help us makes them tired and frustrated too.

Story of a Fibromyalgia Patient

Meet Amy (name changed on request)a Fibromyalgia warrior who shares her story and personal tips on living with fibromyalgia.

Year when symptoms started: 2010
Diagnosed in: 2013

1. What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?

My onset was sudden. My childhood dog passed away over spring break my sophomore year of undergrad. A few weeks later I started to experience pain from head to toe. I was just radiating with pain even sitting still. I also started to wake up with excruciating headaches. Thinking it was just a stress reaction, I went to my primary and got anti-anxiety medication (Celexa). Fast forward three years, my symptoms had progressed and changed. I had seen a neurologist, rheumatologist, genetic counselor, and an ENT doctor, and had been sent on several wild goose chases ranging from terrifying mentions of brain tumors to a possible diagnosis of hypermobile joint syndrome. 

I finally saw a rheumatologist that seemed committed to finding me a diagnosis and helping me with my pain. She ran every test she could think of and then some. My diagnosis actually resulted from a trip to urgent care when my back went out while shopping. I was in pain in a way that didn’t make sense to the doctor I saw and she asked if I had fibromyalgia. I went home and researched it and then asked my rheumatologist about it. She looked up the diagnosis criteria and I fit it perfectly. I went home with a frightening diagnosis and a new prescription plan to try. Now looking back I can see clear symptoms of fibro even from a young age including severe bouts of abdominal pain, tendonitis, plantar fasciitis, chest pain, persistent facial pain, and worse than usual growing pains.

2. How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?

I regularly suffer from deep pain that radiates through my hips down the length of my legs and in my hands, muscular tightness and pain in my back and neck, facial pain, tension headaches, forgetfulness/fogginess, depersonalization, fatigue, constipation, muscle twitching, insomnia, fatigue, and paraesthesia. Less often I suffer from hot flushes, chest pain, blurry or spotted vision, dizziness, and tinnitus. My symptoms change and consistently surprise me. New symptoms sometimes appear long enough for me to freak out and get a referral to a specialist and then disappear once they have inconvenienced me.

3. Do you have any other medical conditions along with fibromyalgia?

I have fructose malabsorption (diagnosed in 2009) and IBS. I manage my fructose malabsorption by avoiding all dietary fructose (so most fruits and sweets).

4. How has your life changed with Fibromyalgia?

I have to plan things ahead of time and I struggle to stay in control. Before volunteering to do anything or taking part in a new activity, I have to think seriously about how my symptoms will be affected and whether or not it will be worth it. I don’t give my time away easily, I ration it according to how I feel in a given week or day. However, the upside of having fibromyalgia has been discovering my personal strengths and taking pride in them. 

I try to remind myself that I do what the average person does every day, but while jumping hurdles that no one else sees.

5. How has fibromyalgia affected your relations?

It can create tension when people refuse to acknowledge the severity of fibromyalgia symptoms. It is not like having a cold and it is not like having a baseball injury or soreness from exercising. Overall though, I have been lucky to have understanding people in my life that I can rely on. My fiancé is extremely helpful. He listens to me, helps when he can, and encourages me, while not letting me pity myself too much. He provides just the right balance of support, which has been invaluable.

6. How has fibromyalgia affected your career?

My career involves a lot of physical work outdoors during certain times of the year. I chose this career before I realized the impacts fibromyalgia would have on me. It can be difficult to keep up, but it is definitely an incentive to stay physically fit. I think that the more fit you are, the more able you are to manage your symptoms. My advice to young people diagnosed with fibromyalgia is to take advantage of your situation and get your body into a healthy state (whatever that means to you) while you’re still young so that you will be better able to manage your symptoms as you get older.

7. What kind of specialist you are consulting?

I am not currently seeing anyone, but have seen the best results with a chiropractor. I recommend looking for a chiropractor with a pain management plan that is adjustable based on your changing daily/weekly symptoms.

8. Has your medication changed over the years? What medicines you are having now and are they helping?

I have taken several different medications in the past, but I have learned that I suffer from chemical sensitivity. I’ve had serious side effects from every medication I’ve tried. I currently manage my symptoms (or try to anyways) with exercise, heat, rest, and stress reduction. I occasionally use prescription Tramadol or Flexeril (a muscle relaxer) when my symptoms increase during a flare. I tolerate them well, but can only take them at night because they make me dizzy/foggy/tired.

9. Have you tried alternate therapy? Did it help you?
I was skeptical of chiropractics at first, but seeing a good chiropractor who listened to me provided me with the most benefits out of any treatment I’ve tried. I had significantly reduced back pain and headaches, but unfortunately it is something that you have to keep up with and it can be costly over time.

10. What are your personal tips for relief?

A good heating pad is a must. Wrapping a heating pad around my leg or hip when they hurt or sitting with my back on it for as long as possible every day makes a huge difference for me. Also, stay hydrated and exercise if possible. Even walking for a little while each day makes a difference. And if you’re overwhelmed with pain all over, a hot shower can help you relax. Stretching while in shower helps even more.

11. Do / Can you exercise? What exercises do you do? Do you meditate?
I am fortunate because my body is able to tolerate exercising. I have tried different things, like the elliptical, workout videos, etc. and I have found that running helps me the most. I think it tires my muscles out so that they are forced to loosen up. Getting into a new workout routine can be difficult at first and I have to listen to my body, but if I stick it out I see gradual improvement in how I feel overall. I also have to thoroughly stretch after each and every workout I do.

12. Have you changed your diet / gone gluten free and did it help you?

I have a unique diet because of my fructose malabsorption and I have tried a few different diets (like limiting gluten) and haven’t seen a substantial difference. I’ve also tried taking different supplements like Magnesium and haven’t seen a difference. However, I have seen improvement since I have increased my water intake. Making sure I’m hydrated limits my occurrences of headaches and their severity.

13. What would you like to say to people who know someone with fibromyalgia?

Be patient and listen. 

As frustrating as it is for you to listen to the same complaints over and over again, just imagine what it’s like living with a painful condition that you did nothing to deserve and have very little control over. 

I woke up one morning with radiating pain and had no idea that it would never go away. It’s hard to accept and it’s hard to cope with, especially as a young person who has a lifetime of struggles to face. Every day is a new challenge and every day we have to wrap our minds around being okay with how we feel. It never seems fair after you’ve had a few good days to wake up in misery and not know when you’ll get relief.

14. What would you like to say to doctors?

If you’re going to say you have experience with a condition, keep up with current research. Also, try to remember that we’re (some of us) hypochondriacs for a reason – we have a weird condition that is usually accompanied by other weird conditions. It’s easy to worry that a new symptom appearing means that we have an additional weird condition.

15. What relations and activities makes you feel better? 

It always helps when people check in to see how I’m feeling. I also went to counseling for a few months and it helped just to express myself and have my feelings validated. Pages on social media can be helpful when no one around you understands something specific that you’re going through. It is nice to have a few different communities of people with chronic illnesses/fibromyalgia to ask questions, vent to, or even laugh about situations that we have all been in.

16. When did you join the Fibromyalgia Awareness blog / the blog's Facebook Page? What do you think about our awareness initiative?

I joined the facebook page several months ago when I decided I wanted to keep up with new information about fibromyalgia. I think the awareness initiative is very important. So many people have never heard of fibromyalgia or have negative connotations associated with it because it is difficult to diagnose. I don’t have the answer to what causes fibromyalgia, but chronic pain is a real issue that needs to be addressed and acknowledged.

Interview published on 12th May 2015, Fibromyalgia Awareness Day. This blog and its owner have the rights to this interview. Do not copy the interview on your website / print / publish elsewhere without our prior approval that includes the approval of the interviewee. However, you can share the link of this interview to help us raise awareness. The opinions in the interview are solely of the interviewee and we do not advocate the use of medicines / drugs, if any, mentioned in the interview. Kindly consult your doctor before starting any therapy or medicine mentioned here.
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Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients fromacross 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.

Something Purple on Fibromyalgia Awareness Day

The Something Purple campaign to mark the Fibromyalgia Awareness Day on 12th May is back!

Millions of people suffer from fibromyalgia that is aptly called Invisible Illness. Yet, there is lack of awareness in most places.

This Fibromyalgia Awareness Day, 12th May 2015, let's have Something Purple to support awareness. Here's a poem on some tips. Just have Something Purple, click a pic posing with it and share it on our Facebook Page.

We shall create a collage of all the pics and share it on our Facebook page as a lovely memory.

11 Tips to plan a day out when you have #Fibromyalgia

With Fibromyalgia, stepping out everyday is not possible for every warrior. Yet, there are days when you want to step out and get some fresh air. Be it your birthday, an anniversary, a little picnic or even grocery shopping, it's a special occasion when a fibromyalgfia warrior needs to spend the entire day out of home.

Here are 11 Tips to smartly plan a day out when you have #Fibromyalgia:

Are you unknowingly torturing someone with Fibromyalgia?

If you know someone with Fibromyalgia, please understand that those with this illness have difficulty doing certain things which appear too easy to you. There are some days they can manage even with extreme pain, but most days, they simply can't. Yet, if you say that you want them to do something, they might go out of their way to do it and spoil their symptoms further. And the fact is that while they will always try their best to care for people, people take their illness for granted and don't care about them.

IN A SINGLE DAY, FIBROMYALGIA PATIENTS CANNOT - wake up the kids, get them ready, cook breakfast, serve stuff, clean house, take care of unwell people at home, visit doctors, get groceries, work from home / do full-time / part-time job, do the dishes, talk to clients / relatives, cook lunch, snacks, dinner, remember to do several things, be active all through the day, go for walks, sleep on time and stay or look happy.

Let me look good | Poem

We, with invisible illnesses, don't and we won't look sick. So the day we feel a bit better, we dress up for ourselves, wear that smile and do what we like.

We hope people take those with invisible illnesses seriously.

Here's a list of some invisible illnesses: 
  1. Allergies
  2. Attention Deficit Disorder and ADHD
  3. Arachnoiditis
  4. Asperger Syndrome
  5. Asthma
  6. Cancer
  7. Celiac
  8. Chronic Fatigue Syndrome (CFS)
  9. Crohn's disease
  10. Chronic Myofascial Pain
  11. Colitis
  12. Depression and Mental Illness
  13. Diabetes
  14. Fibromyalgia
  15. Headaches, Migraines, etc.
  16. Heart Conditions
  17. IBS and Food Intolerance
  18. Idiopathic Intracranial Hypertension 
  19. Infertility
  20. Lupus
  21. Lyme Disease
  22. Multiple Sclerosis
  23. Neurological Conditions
  24. Renal failure
  25. Rheumatoid Arthritis
  26. Schizophrenia
  27. Sjogren’s Syndrome
  28. Sleep disorders

Taking the #FibromyalgiaPalmChallenge to the next level

Do you know a celebrity personally? An actor, author, musician, painter, mayor, senator, dancer, singer, speaker...? Someone who can take the #FibromyalgiaPalmChallenge, tag others and help us reach the next stage? Can you ask them to take the challenge and encourage others to do so?


Valentine's Day True Love Contest 2015

We are glad to announce and invite entries from Fibromyalgia Warriors for the third year of our Valentine's Month contest. The True Love Contest 2015 is a lovely contest just for those who have Fibromyalgia!

This year, we will announce winners in Two Categories, both of which involve Tagging your friends / family / acquaintances on Facebook
Category 1: Express & Tag (words or poems)
Category 2: Take #FibromyalgiaPalmChallenge as a Couple & Tag Friends

More about the contest:

Fibromyalgia Patient Interview / Story 7: Brandi Clevinger

Name: Brandi Clevinger
Gender: Female | Age: 33
Location: (City / State / Country): Charleston, South Carolina, USA
Occupation:  Stay at Home Mom, Blogger
Kind of occupation: Full Time
Year when symptoms started: Summer 2006
Diagnosed in: Winter 2012
Marital Status: Married

Short Stories - Reminder Notes

Janice knew that look. She hated it. The slightly raised eyebrows, the slightly tilted head and that rather long glare made her feel like disappearing immediately. That accusatory look was not new to her. She never lied. Why should she? But she forgot things, not all, but a few. The ones that she should not forget. The ones that involved those people who were not so understanding. She had also started getting confused more often lately.