Welcome to Info4Fibro,
As mentioned above this is a blog in order to educate about fibromyalgia. The other reason it was made was to create awareness. My name is Waleed and I was diagnosed with fibromyalgia in February 2009. Since november 2008 I pulled both my left chest as well as the top left of my back. I experienced severe chest pains and back pains for 3 months.
During this transition I began experiencing symptoms such as intense stomach burns, pain in my legs, muscle pain, muscle twitches, dizziness, chronic fatigue( always present), etc. Most of these symptoms have been present ever since. The first five months I admit I was confused and terrified, no one knew what was wrong and tests kept coming back negative. I am 21 today and slowly pulling myself back together, back in school and work.
The reason I created this blog is simply due to the fact that fibromyalgia is not known by most of the population, was even criticized by health professionals and is still not fully understood.
I want to create awareness amongst my college, peers & extend my knowledge on this issue. I want to prove it does exist from real people experiencing fibromyalgia, such as you & I, or even those who are caring or deeply involved with this issue. If anyone be willing to leave a comment. We could all begin by saying when we were diagnosed and what symptoms we have been experiencing. I have also realized my vitamin D was low from a recent blood test.
So dont be shy and post your thoughts fibromites !
Having Fibromyalgia is a life changer. You live with pain, sometimes severe pain, and all you want to do is cry. Dr's won't usually give you pain medication. The littlest things wear you out. You are constantly tired, very forgetful (this is called fibro fog). This disorder is not new , does not go away, and it progressively gets worse. We are expected to follow special diets and exercise even when we're ready to cry. I don't feel like doing anything, but my mind wants to explore the world. Please be patient, I didn't choose to have Fibro. I hope God spares you and your family of the disorder.
ReplyDeleteHi Waleed,
ReplyDeleteI was diagnosed in March 2008 by email. I was under a lot of stress because my sister was dying of cancer and all the weird symptoms I'd had for about 20 years suddenly ALL hit me at the same time. I was tired all the time, I had a buzzing or vibrating sensation in my hands and feet that got worse everyday. Eventually it felt like fire ants under my skin. I couldn't sleep at night but fought to stay awake all day. All my muscles hurt so I emailed my doctor and she replied that she'd thought for a long time that I had fibro. After my sister died another doctor did the tender points test and verified the diagnosis. Prior to that diagnosis I'd been diagnosed with TMJ, PTSD, IBS and migraines.
Good luck with your paper.
raynedae
Hi Waleed,
ReplyDeleteGood luck with your paper- hope it is massively successful as this is what you truly deserve!
Started symptoms of Fibromyalgia in October 1997 at the age of 24 , in February 1998 my GP diagnosed me with CFS yet it was not until 2002 that received the additional diagnosis of Fibromyalgia after an investigative stay in the Royal Free Hospital in London. Since January 1998 up until the present day have been much too ill to work even part time. Have a myriad of symptoms that affect me cognitively as well as physically. Struggle to explain how it affects me due to the brain fog as well as no two days or even two hours are the same. Emotionally am mostly on an even keel- my faith, my natural optimism, love of philosophy and the fact that have so many supportive loved ones and live in a caring community- all this sure helps! Every day have high pains yet have learnt to adapt to the challenges of fibro plus the pains. In all the 13 years that have been fibro challenged have never had even one minute let alone an hour or a day pain free. The pains very rarely go under 5 out of 10 in any one day- am extremely lucky to momentarily have a 3 or 4 out of 10. Would say am overall severley affected with fibro- even disabled. Yet, having a positive attitude helps me to cope with the myriad of health challenges. Try to lift others with my positivity too. Must admit have plenty of heroes that also help me to keep positive on a daily basis( some are loved ones, some are current everyday heroes, some are current celebrity heroes like Oprah and Lance Armstrong, others are heroes from history- various inspirational figures). Use humour to alleviate the pains/frustrations of the condition too- laughter is such good scientifically proven medicine. Am following in the footsteps of my hero the late Norman Cousins in trying to heal self through positivity, humour and vitamin C, too. Sure makes me feel happier/takes pain a notch down for a little while ( say from 8- 7 out of 10 after a good laugh) so it is a win win situation anyhow.
Sure hope the medical profession can discover a cure as would love to be fibro free most definitely! The symptom find most frustrating as an aspiring author is the fibro fog/short term memory challenges!!
Have become my own life coach over the years to keep self esteem at a good level as well as to live life as dynamically as possible even with the fibro.
Fibro has been a blessing too as have found many amazing 'true' friends, it has made me a better more appreciative more empathic person, have met my hubby, now live in a more beautiful part of Great Britain- moved to a less populated/less poluted area to improve health and live much more in the moment and also now take regular humour breaks have more laughter in my life, have more friends from all around the world now, have become more authentically empowered since fibro and have acquired more knowledge/wisdoms, has deepened my faith as well as my hopes, too. Sure it is not easy yet life is a miracle even if you are bed bound or housebound which am often times.
Hope that the condition will be understood better by not just the public yet by the medical profession. One doctor wanted to send me to a cognitive behavioural psychologist- refused as said that am more optimistic and more determined than many healthy individuals. Get angry when some medical people say it is a psychiatric condition as have never been depressed with fibro. More dynamic thinking is needed by the medical profession as a whole all around the world and an end to stabbing in the dark and speculation- a far more scientic approach and one that takes on board all fibro challenged individuals case histories. Am praying for much more clarity on our condition in the medical world, for sure.
Good luck :-) Waleed.
Dolphin smiles be unto you, warm wishes from the British bat girl :-)
Hello, and thank you for helping to spread awareness of this horrible and debilitating condition! Keep up the good work! Don't forget that May 12th, 2010 is National Fibromyalgia Awareness day! I challenge all fibromites to write a letter to the editor of your local paper and help us all spread the word!
ReplyDeleteHi, I'm Elise from Philadelphia...
ReplyDeleteI got sick when I was 15 and doctors had no idea what was wrong with me. I was misdiagnosed 3 times and put on medicine for something I didn't really have (not to mention I was allergic to that medicine and almost died at 15). Finally about a year later I was diagnosed with FM.
It was weird because I had gotten so used to thinking that I was either going to die or they would find out what was wrong and make me feel all better in one day. To find out that you are sick and will be every day for the rest of your life, it really messed with my head.
I used to be a dancer and had to stop because of the FM. I really thought my life was over, that at 16 I had seen the best years of my life. BUT after the initial shock wore off I remembered that I was raised to be a fighter, and that's how I live my life now. Every day is a fight, who's going to win? Me or the fibromyalgia. And honestly. I don't win every day, but I do on most days.
Now I'm 20 years old an finishing my third year of college. I go to school full time, work part time, as well as planning my wedding.
So yeah, i've done pretty well, but I still have days where I cannot walk on my own or don't have enough strength to dress myself. It's hard to have your (almost) husband dress you before the pain meds kick in.
Anyway, I din't realize I had that much to say, but I hope something I said could help your project!
I was diagnosed in July 2009 and re-diagnosed by a specialist in February 2010 without knowing about the previous diagnosis. I was only 24 and knew I felt way worse than I should at my age. I had phantom pains my entire life, but thought I was having the flu more and more frequently without the other symptoms of runny nose or congestion. It got to a point where I was having difficulty doing dishes, laundry, and even showering. I was only taking a shower every 3 days and sometimes would have to sit down because I could not stand to shower. Working continues to be a big struggle and many people with fibro lose their jobs. I was lucky enough to be working for the government full time for over 1 year before my diagnosis, so I qualified for FMLA leave which although is unpaid leave, it guarantees that I cannot lose my job due to absences relating to my chronic illness. It is a struggle every day and due to bad press, it can make the situation even worse. It is a very real chronic illnesses and can easily be debilitating.
ReplyDeleteHi everyone, I'm Katie. I was diagnosed with Fibromyalgia at 16, although I had been in pain for a year prior to that. All my symptoms started after recieving the second gardisil vaccine. I had a fever that lasted for 3 weeks, and my legs and back ached intensely, which I attributed to all the walking I was doing since I was traveling in Europe at the time. I'm about to turn 18 now, and living with this has been quite a rollercoaster ride. For those of you who remain skeptics, let our stories assure you that Fibromyalgia is absolutely real. We have our good and bad days, and for some, more of those are bad. If you know anyone with this condition, please don't make them feel bad about what they're going through. The amount of stories I've heard about unsupportive family and friends is disheartening. Do all you can to be there for them, and Fibromites, don't turn away help and support from those around you!We can all get through this with some love and support.
ReplyDeleteTo all of you Thank you so much for taking the time to leave your comments and to have visited this blog !!!
ReplyDeletePlease stay tuned in there will be another post
I think you did a good job on the comforts...I look forward to some other things, don't forget living in the softest jammies and cutting out labels....little things irritating our skin can be excruciating....also I look forward to seeing how you deal with school and fibro fog and a flare...you are brave to choose this project, do you have access to the medical sites, medline and medscape they can help you as well....Good luck and thank you for trying your best to get the word out. Natalia from MD Junction
ReplyDelete