CFIDS/ME & Fibro Awareness Week

[PlateletGal]

This is CFIDS/ME and Fibro Awareness Week and Tuesday is CFIDS/ME & Fibro Awareness Day. There are approximately 12 MILLION people who are suffering from these puzzling (to some) and often disabling "syndromes" (I actually think they should be labeled as diseases by now). So I hope that you will spread the word and SPEAK OUT IN THIS THREAD !!!! We have to support the wonderful physicians and advocates who are supporting us. We need more awareness so that the medical community will be interested in these illnesses and not just dismiss us and our symptoms.

With Love,

~PlateletGal & VaBreeze

P.S. ~ VaBreeze made that beautiful ribbon for us.... please feel free to snag it and thank her for her hard work !

http://dailysparkstribune.com/pages/full_story?hash=comments_2529426&page_label=news&id=2529426&widget=push&article-Proclamations%20raise%20awareness%20for%20Fibromyalgia-%20Chronic%20Fatigue%20Syndrome%20=&instance=secondary_stories_left_column&open=&#comments_2529426

[VaBreeze]

Thorninside - We are delighted to have you join us.  Isn't it great when the picture becomes more clear and you know you don't suffer alone?  There are so many here who do not want to mention their illness to doctors or others because of the very reason you stated.  It shouldn't be that way and it's not fair in any sense.  We are glad you took the time to respond to this and please have a wonderful day.

ChitChatNine - Thank you so much for your kindness and thoughts.  There is such a close connection with these illnesses and working with each other can be more productive for everyone involved.  I'm so happy you dropped by to see us and thanks again.

[PlateletGal]

Thank you for the kind wishes ! You guys also have an awesome community and I'm happy that we work so well together !

[ChitChatNine]

Thyroid Disorders Community acknowledges CFIDS/ME and Fibro Awareness Week with yesterday being CFIDS/ME & Fibro Awareness Day.  You have a wonderful community and your members are very special on your community to have made it what it is today!

Our best to all of you and may we find a cure one day soon.

Regards,
C~
Co-CL Thyroid Disorders

[Thorninside]

WOW! You guys make my day, month etc. What is funny/coincidental is that May 11 is my birthday.  What a great present.  Someone in cardio forum suggested I come here and boy am I glad.  

I've been searching for answers for years. Then about 5 yrs ago a rheum. dr. diagnosed me with FM which I knew nothing about. When ever I mentioned it, I got the "yeah, that's a catch all diagnosis that just means they don't know." I got where I didn't mention it because it was treated like a "female thing".  

I've been a hard worker all my life.  My pastor used to call me "Martha" because I was always worrying about the details.  When my kids were in school guess who volunteered. Guess who organized the sport pictures, trophies, parties.

Then we decided to homeschool our kids. The government can come and check our records.  They can even have a pie chart. LOL  My son recently asked if we could ONLY do 8 subjects next year.

I have refused to succumb to FM.  I  have continue to push through the pain. Now there are days when I can't get out of bed.  I fall asleep sitting up.  I'm having palpitations and bacterial infections along with gastrointestinal difficulties.  I've had 3 different kinds of doctors the last month tell me to reduce my stress.  My STRESS is this PAIN and not being able to do things.  

Although I hate reading that anyone else has this same thing, I'm equally thankful.  It is not in my head or female organs.  Thank you all!

[VaBreeze]

Yes it is Angel.

I don't think anyone who doesn't have it can understand what it's like.  These aren't "old age" diseases...it strikes children too.  And I don't buy into the theory that it strikes the poor/uneducated class moreso than others (which is what some studies have claimed).  That's crocky!!!  It is not discriminatory in whom it touches.  The majority of people whom I have met having either of these as a dx are over-achievers with above-average IQ's.  

The stories where children have been taken from their homes (by force) and placed in hospital facilities, where some have passed away, reminds me of what they use to do with the mentally ill.  Place them in institutions and bore holes in their skulls to let the demons out.  It's absurd how some have been treated (or mistreated).  It's disgusting.

I don't feel they are doing enough for FM sufferers.  They must basically rely upon the CFS arena for results, because they seem to be the only ones fighting for their rights too.  Why don't we see those advocating for FM going before the CDC or govt. representatives?  Because it's considered trivial?  Of course, with the NY Times bringing up it's legitimacy every so often, FM is still considered to be psychological and articles of that nature only makes others think that's true.  The only thing that I have seen on television regarding FM were the commercials for Lyrica.  Unfortunately, those with FM will progressively become worse in the long run with some other illness.  

There are so many looking for answers as to why they feel so badly; why they are in chronic pain.  Everyone wants something to take that will make it go away...mask the symptoms.  A quick fix.  Well, there isn't one.  Until people make a loud enough noise to be heard they will continue to be in pain and looked upon as malingering, lazy and hypocondriacs (esp. if the sufferer is female).  If one does nothing, then that's what will be the outcome.  Let's make some NOISE!!!

[kiddthekatt]

   I wanted to make sure that I came on today to say hello to all of you who have made my life better by being here. It is so damn hard for those of us who suffer from fibro/cfs to get the word out, especially when so many in the medical field still have closed minds when it comes to accepting that fibro/cfs is a legitimate disease/sickness and it is slowly draining us of our livelihoods. I laughed the other day when I was talking to my neighbor. We were discussing fibro/cfs and talking about how unfair the medical field was. She came out with something like time has a way of healing..............lol.

   I really didn't know what to say to her because I realised at that very moment that she hadn't heard a word that I was saying. So many people, even our loved ones are the same way. They watch us struggle day in and day out, trying to do something that is almost impossible to do( for us) and it never seems to soak in. I thank God every day for my family. I have so much to be thankful for, I pray that other sufferers of fibro/cfs have the same support system one day.

   I would never wish this monster on my worst enemy, but I would like to swap places with one of the unbelieving doctors just 1 day, and I know for a fact that we would have a strong supporter in our corner. All we can do is keep fighting, getting the word out about this disease and pray that a cure is found one day. It might never happen in my day, but hopefully in the near future. This is our day!!

gentle hugs
Angel

[PlateletGal]

Amen !!

It's our day and I hope more and more people will speak out !

Hugs,

~PlateletGal

[kitonthemoon]

Just want to pay my tribute to all my fellow ME/CFSers, FMSers on this very special day. for having the diginity and courage to live your life despite your daily challenges.

I know most of my friends are poverty stricken becaue of these illnesses.  Though hearts are willing, reality doesn't allow them to donate while they living paycheck to paycheck.  I donate my are work to organizations that hold fund raising auctions whenever it is possible.

It is up to us to do our part..

With all my love and pray for a brighter tomorrow to all.

[PlateletGal]

I hate that you are in the same boat as I'm in. I've had this condition for so many years and physicians were clueless as to my diagnosis, although I kept telling these (!*@(# that I had been ill since having a severe case of mono. One would think that they would have added 2 and 2 together. There is nothing worse than being ill and struggling with judgments and unkind remarks.. even from other chronically ill patients.

One of my physicians told me to tell people that I had an infection or autoimmune disease (I do have a positive ANA titer now). I used to, but lately I'm coming out and educating people.. if they will listen. Sadly, most of them do not care. Of course, until CFS or fibromyalgia hits them or someone in their family.

For those people who still don't believe CFS, fibro or even lyme is real.... I would never wish this illness on you. At least you are lucky.. IGNORANCE on this topic CAN be cured. My condition cannot.

[wonko]

Hi,

I don't have a fibro/CFS diagnosis.  I have Lyme disease that went untreated for a long time, and though I'm in treatment, I deal with many fibro/CFS symptoms.

I know first hand how poorly understood these afflictions are, unfortunately because of my own previous lack of understanding:  Before I became ill, I didn't appreciate the impact daily pain and fatigue could have on a person's life.  I admit that I was ignorant and not sympathetic.  

Now that I don't have the luxury to be so misinformed, I'm working hard to improve my health and my attitude.  I spend a lot (too much?) time online, and hope that by participating in patient-to-patient forums here, I can both learn and offer help, advice, and support to others.

It's still hard for me to take my diagnosis and health situation public, but I certainly won't let anyone around me make judgmental comments.  I hope in time I can grow to better advocate for Lyme, fibro/CFS, and other contested illnesses.

[VaBreeze]

Yes, I would like to have that information.  There is no way we will get the attention, reserach or help we need, unless someone is investigating these illnesses.  Thanks so much.

Now is the time to have your voice, Members.  Tell your story; your frustrations; how long it took for a dx or your level of pain/fatigue and how it effects your daily lives.  Other Members, Doctors and those from various organizations do read through our forum and can gain knowledge from our experiences.    We can't complain about how slowly things are progressing if we don't speak out.  Let's be part of the solution and advocates for our cause!

[PlateletGal]

One thing you may want to consider doing for CFS/ME and fibro awareness week is donating money to these organizations who are fighting for us. If you would like more information on this, please send me a PM and I can send you a list of organizations that I support and why.

[PlateletGal]

bumping up !

[kiddthekatt]

  Breezie wrote as though she was writing about my life. It's been almost 2 years since my diagnoses of FMS/CFS but it feels more like half of my lifetime. My symptoms have gotten worse over this period of time and the pain has increased 10 fold. All we can do is try the best that we can to continue living and praying for the miracle of a cure for this disease.

  My life today is ugly, filled with pain and tears, searing headache, the works!!  When I fill like I do as this very moment, I want to hide away from the world and all of the prying eyes.

gentle hugs
Angel

[VaBreeze]

The first real symptoms I remember as a young teen were the horrible migraine headaches I would get.  They plagued me until my 30's.  I had tonsillitis every year, until I developed a fever of 104/105 and was rushed to the hospital.  After this was treated I had them removed.  In the 70's I began with vertigo...falling down stairs and bumping into things.  Optic test was fine.  ENT; fine.  This was after receiving the Swine Flu shot.  I lived the greater part of my life in and out of the doctors office.  "You have fibrocitis; costrochondritis; pluerisy; fibrocystic breast disease..." that would result in painful abscesses; "...you're depressed"...just some of the things I was told.  Well yes, I was depressed from always being so ill.  The symptoms have only gotten worse with age.

Imagine living most of your life with sickness, but being told that nothing was detected.  Imagine trying to hold a job, be a mother, wife, sister, husband, brother...trying to maintain some sembelance of a normal lifestyle while feeling as if you were mowed down by a freight train or that it took all of your energy simply to bathe and comb your hair each day.  Imagine being so sick you could barely walk to the bathroom, yet you are told that "It's all in your head."  "You look fine; therefore you are fine."

We would like our lives back.  They were ripped from us when we became ill with these diseases.  Yes...I said 'diseases' and they are progressive.  The quality of what bit of life we do have is poor - full of pain and fatigue.  Each and every day.  We sit and wait for the news..."We know what this is...what causes it...we can treat this."  It's been a long time and these words are seemingly no more forthcoming than before.

Imagine not being able to have someone hug you because your body aches.  We can't do things that our peers can do, therefore we are left behind.  Isolated because we can't keep up.  Isolated because no one understands our illness. We live with the stigma of being labeled 'mentally ill' because we are sick from an unknown cause...it's unjust, not to mention plain wrong.  These diseases are taking away our ability to enjoy the simplest things that others take for granted.  A walk through the park, a car ride to the country, holding our children, washing dishes, cleaning house, changing bed linens...these are huge chores for those with FMS/CFIDS.  Whatever a 'norm' does, it takes one with FMS/CFIDS 2-3 times longer to complete.  We aren't lazy, malingering or otherwise non-productive people.  We are in chronic pain.  We are chronically fatigued.  We would much rather be working or doing something we enjoy, as opposed to being housebound in solitude...left to mourn our loss of life as we once knew it.  We shed many tears at our feelings of incompetency, at our inabilities and from being shunned by others who don't live in our shoes.

I pray that no one you are acquainted with, nor a loved one, will ever suffer from either of these illnesses.  I pray that research will discover what is causing this to happen to so many; finding a treatment that actually does work for those who are sick now, so that no one in the future will spend years (or even one more day) suffering.

*I am 55 and have had FMS for 35 yrs.  I did not receive an official diagnosis until 5 yrs. ago.  I now have CFS as well.