Fibromyalgia Awareness | Information, Tips, Support, Patient Stories

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Fibromyalgia Patient Interview: Desiree Robinson

Support of spouse, family and friends makes a whole lot of difference when it comes to dealing with chronic illness. Here's the story 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.

Also remember, all fibromyalgia (FMS) warriors have different levels of pain, fatigue and other symptoms. So don't judge one warrior based on the other.

What's the story behind creating the video?

As a suffer with fibromyalgia of many years it was a mate who said to me that I need to make an awareness video on this illness. I have been wanting to make one for years but didn't know where to start.

You see it was my love of photography that brought me out of my deep dark depression so I knew it was time to put my creativity skills and photography together to bring something new to the audience that would be watching.

Tell us more about the team and how they helped.

My two long term friends Susan Sheehan for her help with hair & Rayner Muller who jumped at the chance to cover The Scripts song: Superheros Rayner4musiC. From there we found makeup artist Ellenlea and Artist Graphics Designer Darren Harper who worked on the videos for us. I couldn't have done it without all there help and support they really helped my dream come to life with this awareness videos

Tell us something about you.
I am an ex-hairdresser and makeup artist by trade but sadly had to leave due to chronic illness. I used to love dancing and playing sport but can no longer do them. But I'm a positive person and have found my creative outlet from photography, I am a self taught amateur photographer.

How long have you had fibromyalgia? When were you diagnosed?
I believe I started getting symptoms from as early as when I was 15, but it really hit in my early 20s. I was finally diagnosed in 2009, I was 29 yrs old.

How do you manage life with FMS? Has it changed your lifestyle?
FMS has changed my life completely, I went from someone so full of life and energy to one day being full of pain and fatigue, I can't work due to the pain and fatigue being so debilitating at times I simply can't get out of bed some days. But just like millions of us, we find ways to manage our own symptoms in time as we all know this chronic illness affects everyone differently, but for me I rest when I can, my hubby lets me sleep in on his days off while he looks after my 3 1/2 yr old. I know when it's time to quit and I don't feel guilty for it which a lot of us do.
I think we need to be ok with saying NO after all it our health that is at stake here. I go out when I'm up for it, I take medications daily which really help with my nerve pain, that horrible burning feeling in your nerves has settled down for me but it took time to find the right medication for me.
I find being positive really helps. Yes, we have big ups and downs on the roller coaster of fibromyalgia but we just need to stay strong, the more we stress ourselves the worse we can feel.
Also knowing that it's now known as a "central nervous system disorder" makes me at ease now, we are not crazy like some might think.

What are your personal tips for those with fibromyalgia?
Get educated - Knowing more about this chronic illness is key to you finding your way.
Do what's right for you including medications, fitness, diet... it will take some time to find a balance that is right for you.
Don't overdo it and save your energy for what you need to do the most during the day. If you have been invited somewhere and have accepted but need to decline on the day, don't feel guilty - you have no control of how and when FMS will strike in a flare.
Talk to those in your family and close friends about your illness, they will not know how much you are suffering.

What would you like to say to the doctors and caretakers?
I would like to say I have a fantastic doctor but this has not always been the case which I'm sure all of you have experienced from time to time - the negative and non-believing doctors. We always knew it was real, and things are slowly changing.

I just hope these doctors who don't believe really go and do their research in hopes of changing their thoughts. To those doctors treating FMS patients, please just be there for them, really listen to the individual patients... not one person with fibromyalgia will be exactly the same as another you cannot put us into a stereotype like disease. Fibromyalgia is not a one size fits all chronic illness, it effects everyone differently everyday of the year.

To caretakers please just be there to listen. Yes, a lot of us need help from time to time and there's a lot of stigma with us being lazy or faking it when what we are saying is just true. Please just be patient and roll with the roller coaster with us, it's not an easy ride this ride for life with no cure yet.

Desiree Robinson
Desi Lou Photography

Miracle cure articles and ads disappointing Fibromyalgia warriors


And try not to stress when they post things like a woman was cured by a cheap cream!

This is in response to a fibro friend who is so furious, and so am I, after seeing an article link on a popular website. And I am not posting that link as I don't want to give any publicity to a fake product or the woman who's trying to gain money and fame out of people's misery.

The cream might be minting money out of people who are desperate to try anything to get some relief from pain. If it was good enough, there would have been studies and research to prove it. And the scientists who are working towards finding a cure since years would have announced it. If it was so genuine, why didn't they take a team of scientists and doctors to talk about it? Why a pretty looking woman?

Please SHARE this post so that suffering warriors are not subjected to another series of expenses, and more importantly things like "Have you tried it?", "You can be cured", and "Stop complaining!"

If there is a real cure, we all will know as there will be announcements all over by scientists who will invent a drug or solution.

Take care.

50 Activities / Things that #hurtwithfibromyalgia

Several things hurt most Fibromyalgia warriors on a daily basis. While a handful of patients are able to manage the condition somehow, most have unbearable pain and many other symptoms 24x7. Listing some things that are painful for most Fibromyalgia warriors - a quick reference for the #hurtswithfibromyalgiachallenge.

1.   Getting out of the bed
2.   Sleeping
3.    Standing for over half an
4.    Cutting vegetables
5.    Walking
6.    Exercising
7.    Combing hair
8.    Bathing
9.    Holding a child
10. Lifting shopping bags
11. Driving
12. Sitting in a theatre for
the entire movie
13. Climbing stairs
14. Typing
15. Using mobile phones for
16. Stirring while cooking
17. Weather changes
18. Bright sunlight
19. Writing
20. Holding a book to read
21. Reading on kindle
22. Dusting
23. Sweeping
24. Brushing teeth
25. Holding the handles while
travelling standing in a bus / train
26. Lying down for too long
27. Lifting a coffee mug
28. Swimming
29. Cycling
30. Chopping vegetables
31. Most footwear
32. Tags on clothes
33. Slightly tight clothes
34. Opening doors
35. Opening some taps
36. Dancing
37. Desk job
38. Field job
39. Holding a camera
40. Most arts and crafts
41. Outdoor games
42. Indoor games
43. Hosting guests
44. Holding a trophy
45. Hard mattresses
46. Hard seats
47. Remembering things
48. Using scissors
49. Sewing
50. Opening jars

#HurtsWithFibromyalgia Challenge

#HurtsWithFibromyalgia Challenge
The easiest challenge ever for the most complicated invisible illness.

12th May is International Fibromyalgia Awareness Day. Have you and your friends heard about Fibromyalgia? Do you know that it is incurable and invisible? Do you know what exactly it is?

Fibromyalgia warriors across the world are suffering every minute. The 24x7 torture by the illness is one thing that we are living with. Problems in relationships and jobs are other issues. But what hurts most is that nobody believes we are sick. We just don’t look sick and people just don’t know what Fibromyalgia is all about.

No, we don’t need those big donations, after all, there’s no big surgery required to cure us. All we need is a little trust when we say we are sick which is only possible when there is clear understanding of the condition. Understanding by the people that we are not lazy but we are unable to do the simplest of tasks. Understanding of this complicated illness so that no one goes undiagnosed. Understanding of this illness by one and all so that fibromyalgia patients need not struggle to explain the umpteen symptoms to anyone who asks what are they suffering from.

No big company or celebrity or brand has yet done anything big to help us raise awareness. So, we have taken it on ourselves to do so. Will you support us in raising awareness about Fibromyalgia across the world? Please take this simplest ever challenge that aims only to make the world understand what fibromyalgia is all about and what are the challenges faced by the patients. No donation involved. We just want everyone to understand.

#HurtsWithFibromyalgia Challenge
An initiative by
Facebook | Twitter 

It's very simple! Post a photo doing any daily activity and use the hashtags #(activity) #hurtswithfibromyalgia. Tag and challenge your friends or celebrities. You can take the challenge on Facebook, Twitter, Instagram, Snapchat...

The point? Every task, big or small, is very painful for most fibromyalgia warriors. So whether it is being able to move out of the bed in the morning or preparing a cup of tea or typing all the words you have read in this post, it is quite painful. Basically, everything you do in a day is painful for fibromyalgia patients. Yes, even sitting idle for a while! For a quick reference, we have jotted down a list of activities / things that hurt with Fibromyalgia on this link.

So, post a photo of yourself or your friends doing any activity. It’s as simple as that!
Remember to use the hashtags #(activity) #hurtswithfibromyalgia. Tag and challenge your friends or celebrities.
Example: #cooking #hurtswithfibromyalgia

We hope you will help us raise awareness about Fibromylagia, an invisible, incurable illness.