Posted by TENA/ DIAMOND on 1/2/2009, 4:19 pm, in reply to "Letter to NY Times #1"
Imagine having the Honk Kong flue 24/7. Imagine being in so much systemic, physical pain that your body goes into a full on siezure because it can' handle the onslaught of a disease that causes pain receptors to go into overload. Imagine not being able to
lift your child when he/she cries, or the simple act of having your husband or wife touch you because the pain is so horrendous, it's impossible to get near you. Imagine the hospital and doctor bills ruining you financially, and the loss of family and friends, marriages, and jobs. Imagine loosing everything because of a disease that literally robs you of the ability to live a normal life . . .
and then imagine that no one believes you . . . oh wait, we don't have to imagine it. It's very real and it is chronic. It is a lifelong disease that has changed the course of many a productive life, including my own. I was diagnosed with Fibromyalgia in 1990. I invite this doctor who is still living in the dark ages to talk to those of us who have had to deal with his kind of mentality for 20 plus years and longer. Fibromyalgia is now an epidemic and please, he and his kind can pat themselves on the back for that. Fibromyalgia mimics much of the symptoms of Multiplesclerosis, yet we are treated as if we are attention/drug seeking individuals and we are shamed into isolation. This disease is nuerological/ immunological in nature and we treat it like arthritis. It is not even in that category. The quality of our lives have been devastated and it has taken nearly 30 years since FM was first noticed, for the medical community to even begin to acknowledge
its existence. We have an even larger problem now because we are bombarded with "snake oil" remedies and the pharmaceutical companies that make a fortune coming up with myopic drugs they tout to be effective, yet the very nature of some of their side effects closely resemble symptoms of renal failure. Most of these drugs are so expensive no one can afford them and a large number of our population have been forced into poverty can't possibly pay for them. Fibromyalgia is a very real and pervasive disease and it has ruptured the fabric of many lives. I encourage all who want the truth to research this disease and then make an informed judgement based on the experiences of doctors and patients alike who are comitted to educating the public on this very real disease. Rayn Cumiskey ************ ********* ********* ********* ********* ********* ********* ********* ********* ********* ********* ********* **** People who have suffered (YES, the key word to this
condition IS suffering!) from this condition do NOT need people like this making light of a terrible health crisis that is affecting millions of people around the globe, & trying to make us all look like a bunch of psycsomatics to say the least. He is doing a TERRIBLE disservice to those of us whose lives have been reduced to rubble thanks to THIS! Just when scientists are finally starting to acknowledge how REAL & DEBILITATING this is, & drs. as well who never believed us, along comes someone like Berenson who takes away our credibility! HOW DARE someone who is healthy be allowed to do something SO HURTFUL to allllll of us whose lives are being devastated by something so misunderstood! !! I know, nobody can understand anything until you walk in their shoes, & this is a prime example of just HOW true that is, but he had a huge forum writing for the N.Y.Times & managed to completely disregard us as human beings, let alone SICK ones who have finally begun
to find SOME HOPE in dealing with this never ending pain, exhaustion, weakness, brain fog & any & all of the other horrible symptoms all of us suffer from on a daily basis! The joke among all of us who hear about people who don't believe this is real is:
"IF we could breathe on them to give it to them, they would ALL have it!. I hope you don't consider this too unsuitable to send, because I know all of us feel exactly that way, even though we wouldn't want to see anyone have to suffer as we do on a daily basis. THAT would be the only way someone could truly understand where we "come from" trying to make it through life on a daily basis as best as we can. We are ALL VERY strong people who have to endure feeling horrible on a daily basis, & the key word daily is HOW horrible we will feel as to whether one day is better than the other. Let's hope that Berenson will realize when he gets all of our comments that he needed to reserve his opinions to himself & NOT give himself the opportunity to bash all of us people who can only hope that someday SOON, there will be relief for
ALL of us people who never asked or deserved to have something ruling & ruining our lives as this has done to all of us! THANK YOU again for giving all of us the opportunity to set the record straight, & I am SO glad so many people responded to the terrible negativity in that story! Sincerely, D. Tevlin
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