We Refuse to be victims

 

Fibromyalgia is a very real and painful disease.   It is a neurological disease, it is not imaginary, but it does start with the brain.  Anyone who tells you its not real has not been educated and will remain ignorant.  People need to educate themselves before they judge us. I hope this site makes people more informed and aware. 

 

 Refusing To Be A Victim:

Shortly after my Father passed away in 96 I had a really bad flare. I was not aware of FM at that time.  I kept going to the Doctor, and I finally told him I am to young to feel this old.  He finally ran some tests and I was Dxed with Lupus. I spent almost  a year in bed, and not being able to even wear many clothes as my body was in such pain.  But I have lived past that, and a lot more.  I have learned that I have FM as well since that time. And i have Vertigo.  But I will still learn to adapt and push past that as well.  I Refuse to be a Victim.  Some days are really bad.  But as long as i have friends and family i can push past that.  And if i am able to help someone else then i am succeeding in life.

 Ronnee McComb

 

 
 
 
  I started to feel very tired in june 2000, i was signed off work and I slept 18hrs otta 24, I lost 2 stone in weight in 8 weeks, I was very poorly for ages. At the beginning of 2003 i decided to fight back, I went to the local hospital to gain weight,  and to do excersises to build my self up, after 9 mths,  I was on the way to recovery and I also started at a day center,  on mon and wed to help me cope better, and I also learnt to space my self better, in july 2004 my friend decided that I need time out,  so took me to our local pub once a week as they had a quiz, of which I enjoyed.  In 2005 i was lucky enough to meet my future husband,  and wiv each date my confidence grew, I knew I wud never have my old life back,  but decided I wud have a new one , I am still not fully recovered,  and the docs think this is as good as it will get,  I still have to be careful as I catch all germs going,  and in the winter when its cold,  I die alittle as I cannot stand it . I have the flu jab every oct even though this is frowned upon if u have cfs but I dont care id rather have pain insted of the flu. I now find I have trouble sleeping too and the doc now thinks iv got fibro as well so more hospital tests more needles and feeling like a teabag, at the moment im having awful pains in higher ribs and breasts im taking naproxen and this takes edge of the pain but not alot, it all gets too much and i sit and weep, but  promised my mum as she lay dieing that I would never give in and im not never ever, There are people worse off than me, and yeah im not a victim, im a survivor.  From  ozziesmum  [dolls]  sara eaton  uk
 
 
 
 
 

Hi, I'm Raven!

Since my dx in november of '07 of FM, I have been doing a lot of reading. I am convinced that I have had FM since childhood, by the then dismissed, "growing pains" that I cried all the time with. Over the yrs, the symptoms would show themselves more and more and with each traumatic event would seem to get worse and worse. I ended up in ER in April of '07 because I could not bear weight on my left leg. I had been having trouble walking for yrs and thought whatever was going to happen to my leg..had HAPPENED! I had been to numerous doctors over such things as rib pains, hips, not walking, constant sinus infections etc and was always sick as a kid. Spent a lot of time having teachers bring homework to my house so I could do it there and not fall behind.

My ailments were never enough to stop me from working, until July of 06 when I hit rock bottom with what I now know to be bipolar disorder. I am very lucky to have survived at all, thanks to a loving family.

I broke down and applied for welfare in April of 07 and rcv'd it immediately. Thank God I am on Medicaid now or I would be up a creek w/o a paddle. This was when I was dx'd w/ bipolar and took several attempts to finally come up with the FM dx. I also have an inoperable herniated disk and degenerative disc disease which kills my tailbone. I'm only 44 and feel 144 most of the time.

However, since then, I have met some of the BEST FRIENDS I have EVER made online, and most of them are right here now! Thank you Soulten!

With meds, family and friends...I WILL SURVIVE! I know how hard it is to cope with becoming a "new person", an unfamiliar shell of who we used to be. But I also have come to the stage where I think that my life isn't completely worthless and that I don't contribute to society or am active anymore. I think now that I AM contributing, in my small way, here and with others going through the same difficulties as myself. If I can help even one person, even if it's to make them smile on a reallyyy bad day, then I feel as if I've accomplished something useful and purposeful.

Even the simplest of things like, telling "ozziesmum" to wear a camisole with built in shelf bra so it won't hurt her ribs anymore! I burned my bra's a long time ago!!!! Hurt too much to wear them, and these at least stop the lil' darlin's from jigglin round so much! LMOAOOAOO.

I ... savor...the time I spend with my friends here and love each and every one of them. By sticking together and helping one another through the rough days...we can all make it and take back our lives!

Raven5000-aka-Moira

 
 
 
 
 

I believe this thing called FM, started for me in the late 80s. I was always sick with the strep, and could hardly stay awake for classes. I was afraid that I wouldn't graduate, because I kept falling asleep in classes. I was always in pain, but everyone kept saying its just growing pains. My Mom thought I was being lazy cause I couldn't stay awake. I knew something was very wrong with me, but no one else did or cared. This is also when I started having now what I know is panic attacks. I would get them mostly at night. I would fall asleep and feel something press down on me. I couldn't breathe or move or scream out. I was afraid to tell anyone for fear of being laughed at or told I was a freak. Mostly kept this all to myself. Years later I figured out through research on internet, that this stuff was real and not in my head. I was only diagnoised with FM couple years ago and it has been real interesting since. I am still in pain from knots in muscles and struggle with tiredness. I work part time and struggle to get through the days. I do all of this without prescription meds but I take a buttload of supplements. I also have migraine headaches that down me. Thankfully I only have them 1-2 a month right now due to a supplement I take. Each day is a struggle as we all know and I try to be thankful for everything and everyone that I have. Humor helps. But I still get so frustrated with this Dx. It takes me forever to do anything anymore, and I hate feeling like I am moving through molasses. However this thing called FM does not have me. I am a survivor. I do accept it. It is a part of me. But is it not who I am. I am more than FM. I am a survivor.

 

Doxielover70 aka Steph

 
 
 
 
 Hi, my name is Coree, aka, bhgirl. I was diagnosed with fibro in April of ‘06 but like most of you, my troubles didn’t start just before that point.  

I was always a having problems with anxiety since I was young.  In fact, I can recall specific times clear back when I was in the 4th grade.  My mother always thought that I was just had a “bug” or the flu picked up from a classmate because of all of my stomach trouble.

I too had the “growing pains” as mentioned by another member here and I suffered from horrible earaches but no cause was ever found.  Because we didn’t have health insurance nor the means to pay for doctor appointments, my mother did the best she could to ease my pain.  I’m sure most of you have had the homemade remedies for ears such as; blowing smoke in the ear; a cotton ball soaked in oil sprinkled with black pepper; and constant ear flushings.  As I look back on it now, I realize that it was connected to my nerves,  jaw and neck pain. I still suffer from ear problems and my hearing is very sensitive.  I often wear earplugs just to keep the noise levels down.  I have broken one of my eardrums twice. (Luckily it healed).

As I grew older, I realized that not only my ears were sensitive, but also my eyes and the touch of my skin. It wasn’t always constant, but as the years passed, it became more prominent.  By the time I was in high school, I was suffering from the beginning stages of panic attacks and fatigue.  

Now don’t get me wrong. When I was growing up, I was a physically strong girl. I was the captain of our schools Dance/Drill team and won many awards. We would practice 5 days a week for 2 hours a day.  It’s like doing a series of aerobics 10 hrs a week not to mention the actual performances.  Plus, at the same time, I was training for weightlifting competitions. At the age of 18, I went to Nationals in White Plains, NY and took 1st place in the deadlift competition, lifting 300lb. To give you an idea, I am just shy of 5’5” and my weight class was 143 if I remember correctly.  I still have the trophy around somewhere. I was very proud of that.  

Due to personal reasons, I quit the exercise circuit and I went down hill from there. My panic attacks got worse.  Much worse.  To the point that I was having 5-6 per day.  I didn’t know what they were but I knew that it was interfering with my social life and I lost a lot of friends who didn’t understand.  When I was about 20, I was an alcoholic. I say was because the only reason I was drinking was to avoid feeling those panic attacks because still, at that point, I was undiagnosed.  In fact, I spent 3-4 months of my life in my parents house (an attic room that I had fixed up) and I was too afraid to leave.  I felt like one of those people you read about in books.  You know what I mean, the crazy relative that is tucked away and no one talks about.  I wouldn’t even come down for company.  I just prayed that they would leave as soon as possible.

Around this time, I finally sought treatment.  The “docs”  told me I had severe panic disorder and agoraphobia.  Well, at least I had a name for it. It didn’t help me feel less crazy, but it also didn’t explain the bouts of pain that  I was suffering.  They put me on all sorts of meds and I finally built myself up enough to go out and get a job.  The job and the combo of the meds helped some but building my self esteem was the most important thing that came out of it.

Fast forward a bit and I have conquered my panic attacks and got them managed down to occasional anxiety without meds.  My pain was getting worse but my fiancée and my family thought it was just from all the damage that I must have done to my body when I was younger as a dancer and weightlifter.  I bought that reasoning….. for a while.  My new job had insurance so I thought it was time to figure out why my knee was hurting so bad.  It had small BB size lumps on the tendons and would give out on me when I stood up.  Long story short, no good answer could be found.  And as most of you are familiar, this was the start of the many, many doctors and specialists that couldn’t find anything wrong with me. I felt like a hypochondriac.  

There is light at the end of this tunnel.  I was partnered with a rheumatologist that gave me my FM diagnosis. I then saw a neurologist who confirmed the finding and stated that I also had MPS and peripheral neuropathy.   YEAH! I have a diagnosis!  CRAP! There is no cure!

So here I am today, still suffering from complications of my illness, still being tested, still going through life’s daily challenges, and still being medicated. I am one of the human guinea pigs.  And to all my other test subjects, I just want you to know, that I am still positive and I refuse to give up.  I push myself when I can and rest when I should.  I gave up my hamster wheel a few years ago. LOL

And my friends, wow. I have met some terrific people that support me and don’t judge me for my weaknesses or my illnesses.  And to all of you, I say thank you from the bottom of my heart!

 
 
 
 
 
 
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