Local NEWS Station FINALLY listened!!

Discussion in 'Fibromyalgia Main Forum' started by ForeverFlaring, Jun 14, 2003.

  1. ForeverFlaring

    ForeverFlaring New Member

    After sending my local news channel well over 30 emails including our biographies, they finally did a segment on Fibro!!!

    Not sure if I am allowed to post the URL here since it is advocacy, but will wait for an answer from Shirl or Mikie.

    The article has an interview with a doctor, a patient and info about Fibro. All in all it stresses that it is an underdiagnosed and misunderstood disease. (Yes they call it a DISEASE!!!)

    Its the little things in life that mean so much. Here is a quote I copied...

    "Fibromyalgia is a complex and often misunderstood disease; and, unfortunately, some patients are initially told that all their problems are psychological -- which is clearly not the case." -- Dr. Paul Nemiroff, KDKA Health Team

    Anyhow, if I am able to post the link I will do so.
  2. Mikie

    Mikie Moderator

    Can you give us the name of the website? We can probably use our search engines to find it.

    Love, Mikie
  3. ForeverFlaring

    ForeverFlaring New Member

    I am glad I didnt go ahead and post it. :)

    The news channel is called KDKA. I am sure the home page can be found. If you scroll down on the right hand side, look for Dr. Paul and Maria, and you will see the link to Fibromyalgia.

    I think my final letter may have helped. I told them if they were going to continue to ignore my emails, I would stop watching their channel. I would ask all of my family and friends to not watch as well. (All of my family is in Florida so they wont be watching!)

    Anywho, I just thought I would share. It is a great segment for awareness.

    L&L,
    Sandy
  4. ForeverFlaring

    ForeverFlaring New Member

    I wanted to add..when you click on the link, there is an article to read. To the right of the article it says..
    Click here to watch Dr. Paul's report. That is where the news clip is.
  5. Shirl

    Shirl New Member

    Fibromyalgia: Diagnosing and Treating General Aches and Pains


    Written by:
    Larry Leventhal, MD, FACP, FACR - Graduate Hospital, Philadelphia PA



    Outline:
    Definition and Diagnosis
    Triggers
    Treatment


    "You’re overly emotional, take a Tylenol."
    "Learn to live with it."
    "Aches and pains are just part of getting old."

    People living with generalized musculoskeletal aches and pains put up with a barrage of such statements. For them, activities usually taken for granted -- lifting a gallon of milk, peeling potatoes, or washing dishes -- may cause diffuse pain. What if you suffer such aches, and your physician is having difficulty coming up with an explanation? Could you have fibromyalgia?


    Definition and Diagnosis

    Fibromyalgia syndrome is a common condition associated with widespread aching, stiffness and fatigue. (A syndrome is defined as several signs and symptoms which occur together.) Although many patients feel that pain originates in the joints, fibromyalgia mainly affects muscles, ligaments and tendons. Despite the symptoms, inflammation is not an important part of this condition.

    A diagnosis of fibromyalgia is based on patient complaints; unfortunately, no laboratory tests are helpful. Generalized pain is the most prominent feature. Most patients complain of aching and stiffness in areas around the neck, shoulders, upper back, lower back and hip areas. Discomfort may start on one area, then spread to others over time. The pain is often affected by weather conditions, sleep patterns, activity level, and stress. The general physical examination is usually normal, but careful musculoskeletal examination reveals specific localized "tender points." Tender points are usually found on both sides and in the upper and lower portions of the body. The presence and pattern of tender points, in association with widespread pain, distinguish fibromyalgia from other generalized musculoskeletal conditions.

    Several complaints may be seen in association with fibromyalgia, including tension and migraine headaches, abdominal pain, bloating, with alternating constipation and diarrhea suggestive of irritable bowel syndrome, as well as bladder spasms and irritability causing urinary urgency or frequency.

    Changes in mood and thinking are common in fibromyalgia. Some people may feel anxious and depressed. It is important to remember that people with many chronic illnesses suffer "reactive" depression. People with fibromyalgia may report difficulty concentrating when performing simple mental tasks. Many experience a sleep disorder in which they wake up feeling unrefreshed, even though they may fall asleep without difficulty. Frequent awakenings with a non-restorative quality to the sleep are commonplace. Research has shown that disruption of deep sleep alters many body functions and pain perceptions.

    Occasionally, fibromyalgia patients may feel the sensation of numbness and tingling in various body parts, specifically the hands and the feet.

    Most people with fibromyalgia experience moderate to severe fatigue along with decreased exercise endurance. Some people with fibromyalgia have symptoms of chronic fatigue syndrome and because there is an overlap between fibromyalgia and chronic fatigue, it may be difficult at times to separate the two.

    It is not unusual for patients with fibromyalgia to suffer symptoms for months to years and undergo many tests and specialist evaluations before the diagnosis is made. Because various tests are normal and patients look well to family, friends, and even health care providers, many are considered to have no "real" condition. Feelings of guilt, anger, anxiety, and depression may result.

    Triggers

    Many different factors, alone or in combination, may trigger fibromyalgia. Stressors such as viral illnesses and emotional or physical trauma may lead to the generalized pain and fatigue associated with this condition. Patients subsequently become inactive and anxious about their health, further aggravating the disorder. Research has focused on whether certain chemicals and hormones that alter pain, sleep, and mood play a role.

    Treatment

    Physicians should tailor a treatment plan to for each individual’s needs. Some patients with fibromyalgia have mild symptoms and need very little treatment, once they understand what the condition is and what worsens it. Often, just knowing that fibromyalgia is not a progressive, degenerative disease leads to improvement. The more patients know about their condition, the more they take an active role in finding the best ways to lessen their symptoms and better their outcome. Support groups and educational classes help many people.

    Physical rehabilitation consisting of postural education, stretching, and low-level aerobics is beneficial in treating fibromyalgia. Taking part in an exercise program usually increases endurance and decreases pain. Low-level aerobic exercise has been shown to be especially beneficial. For patients reluctant to exercise because they are already feeling pain and fatigue, low-level aerobic activities such as walking, biking, swimming, or gentle water aerobics are generally the best way to start an exercise regimen. Exercise on a regular basis such as every other day with slow, gradual increments in activity enable patients to reach a better level of fitness. Oftentimes, a physical therapist can help design a specific exercise program to improve, posture, flexibility, and fitness.

    The non-steroidal anti-inflammatory medications used to treat many rheumatic conditions do not have a major benefit in fibromyalgia, though some patients report modest pain relief with these compounds. Cortisone-based drugs are ineffective and should be avoided because of potential side effects. Medications which promote deep sleep, improve pain, and relax muscles may help patients with fibromyalgia get more rest. These include amitriptyline (Elavil), doxepin (Sinequan), cyclobenzaprine (Flexeril) and other medications which increase central nervous system serotonin levels. Although these medications are also used to treat depression, they are prescribed in lower doses for use at bed time. Many of these medications can cause dry mouth, increase appetite, constipation, and drowsiness. These side effects are rarely severe and often diminish over time.

    Relaxation techniques such as meditation, mental imagery, progressive muscle relaxation, yoga, or biofeedback often play an important role in the management of fibromyalgia, in conjunction with medicinal intervention. Some people with fibromyalgia have such severe symptoms they are unable to function either at work or socially. These individuals may benefit from a comprehensive program that comprises physical and occupational therapists, medical social workers, rheumatologists, physical medicine physicians, mental health professionals, rehabilitation counselors, and sleep specialists.

    Most people with fibromyalgia improve and are able to manage their condition effectively. A thorough understanding of the causes of fibromyalgia as well as aggravating and relieving factors is needed to help tailor better treatment and even preventive measures.

    The therapies mentioned here are by no means all-inclusive. Also keep in mind that even the non-medicinal treatments can lead to problems if they are used incorrectly. If you think you have fibromyalgia or your aches and pains are not going away, please see your doctor. It’s important that you maintain an active role in managing your symptoms. Although the pain can emotionally wear you down, you can still fight back.



    © 2003 Healthology, Inc
  6. Mikie

    Mikie Moderator

    This is a pretty good article. I'm glad they found someone with knowledge of our problems. Good work, FF!

    It's amazing how pervasive the old Elavil and Flexeril combo is ingrained in docs' minds even though both these drugs have caused a lot of problems. I know that they have been helpful for some here, but they have also caused a lot of problems for many.

    Whenever I hear "increasing seratonin" or "managing seratonin," I'm thinking SSRI's which can be harmful for us.

    These kinds of articles are really important because they bring our illnesses into the mainstream and away from the fringe where they have been for too long. I do look forward to seeing more progressive articles with more cutting-edge treatments.

    Thanks again, FF & Shirl.

    Love, Mikie
  7. kmelodyg

    kmelodyg New Member

    Congrats on getting yourself heard! I actually posted yesterday about needing a sample letter that I could e-mail my local newspeople. Could you pass one on to me? It seems that you may have been able to word it better so that you could get a respnse. Thanks!!

    Lots of Love,
    Kathryn
  8. Shirl

    Shirl New Member

    FF, how about posting your letter to KDKA for us to copy for out tv/news,radio stations? you must have done something right that we are not doing!

    I get news from three different local stations on tv here, so would be glad to bombard them too.

    That threat you made would be a big help, these are small stations :)

    Shalom, Shirl
  9. ForeverFlaring

    ForeverFlaring New Member

    I just now saw the reply asking for my letter. I used the one I made for a cover letter for the biographies. It might take me a while but I will find it and copy and post it here.
  10. ForeverFlaring

    ForeverFlaring New Member

    ok I am back..this is the letter I sent to them. Feel free to use it if you like or make your own.

    ____________________________________________________________

    Abraham Lincoln once said "The best thing about the future is that it only comes one day at a time." To people suffering with Fibromyalgia and Chronic Fatigue Syndrome those words have never rang more accurate.

    Imagine if you will, it is Monday morning. You wake up to your alarm clock for work. The very sound of the alarm clock burns into your head. Your body aches everywhere and you feel terribly groggy as if you had no sleep. You try to get up to get in the shower but your body resists every attempt you make. Your head is pounding and you cannot think straight. You feel exhausted, achy, and dizzy and realize you have the flu. Your arms and shoulders scream in pain as you reach for the telephone. You cannot go in to work, there is NO way you could function in this manner. A nice day of rest in bed is all you need.

    Several days pass and you feel no better. You have slept fifteen hours each day and cannot understand why you haven't shaken this bug off yet. Your employer seems to understand but you are very relied upon at work. You are the one who holds the fort down. You know you cannot keep missing work.

    Another day passes and you still have not even had the energy to sit up and drink your morning coffee. In desperation, you go see your doctor. Your doctor examines you and finds nothing wrong. He says you are probably under alot of stress at work and a vacation might be all you need. You protest. You have missed a week of work already, you simply cannot miss more work.

    The weekend comes and goes. You have slept more hours than you thought were humanly possible. You still feel no better but you know you have to go to work. You cannot miss anymore time.

    You go to work even though every fiber in your body screams at you to please not go. You manage to muddle through the first hour but you cannot concentrate or understand your fatigue. After three short hours of work, you explain to your boss you are still not feeling well and need to go home. He looks you up and down, and openly tells you that you do not look very ill. You hear a thread of disbelief and disgust in his voice. Sadly on the drive home, his words echo in your head. You realize in the five minte conversation you had with your boss that you have just moved down from highly deserved and applauded Employee of the Year to a disposable employee who better get their act straight if they want to keep their job.

    Imagine if you will that three months later you still do not feel better. You lost your job that you worked every day at for sixteen years. Incredibly, you TRAINED the man who fired you. Your fatigue has not lessened. Your pain has intensified. Your arms and black and blue from all the blood that has been drawn for test after test. You have seen almost every doctor in your town and already have depleted the savings you had worked so hard to accumulate. You can no longer even stand in the shower, yet according to the doctors, there is nothing wrong with you. You are labeled as depressed and lazy. You are considered a hypochondriac by your family. Your friends have stopped calling to see how you are. Every support system you had has vanished off the face of the earth and left you behind. You are hopeless, desperate, confused, and most of all, alone.

    Sadly enough, this very situation has happened to countless people worldwide. It is estimated that approximately four million Americans have fibromyalgia. These are only Americans. These statistics do not include worldwide suffering. Sadly, these statistics also do not include the millions of people who are wandering from doctor to doctor, praying to be told something IS definately wrong with them; praying that this mysterious set of symptoms is not in their heads.

    We, the people who suffer from this disease come to you on bended knee. We are the mothers, fathers, brothers, sisters, grandparents, aunts, uncles, cousins and friends of someone you know. We have all been through what our fictitious friend who woke up one day "just not feeling well" has been through. Our friend was not married and did not have children to cope with on a daily basis. Our friend was as basic as one can be for an example of how this disease can affect just one person and not an entire household.

    We have been to hundreds of doctors. We have spent tens of thousands of dollars. We have memorized the side effects of most medications used to treat us. We have had to become self-educated about our illness. We have lost our independance, our friends,our spouses, our families, our jobs, and some have even lost their homes in desperation for a diagnosis and subsequently a cure.

    Fibromyalgia and Chronic Fatigue Syndrome have been diagnosed as early as in the 1800's. Back then, when medicine was primitive compared to today's standards, baffled physicians had no idea what this invisible illness was. Those suffering from this mysterious ailment had many symptoms in common but physicians scratched their heads as there was no cure for this syndrome. Those who suffered from this combination of symptoms were often diagnosed with "nervous exhaustion", "rheumatism", "depression" and "myositis". Today we are diagnosed with "stress", "fibromyositis", "laziness", and "depression". Two centuries later, we still have virtually the same diagnosis as we did in 1800, and yet there is still no cure. One has to truly be in awe of the medical advances of our century....

    We ask that you will consider how we look and feel inside although we do not look ill on the outside. We are still the people who loved to laugh at your silly jokes. We are still the people who loved to go on a weekend jaunt simply on impulse. We are still the ones who took pride in our work, our actions, our faith and morals, and our bodies.

    We all have hope, and we all pray for a cure for this diagnosis so we may resume the lives we had. We are not asking for sympathy and pity. We are asking for understanding. We are asking to not be ridiculed and talked down to by our physicians. We are asking not to be discriminated against by our governments when applying for disability benefits. We are asking for more funding to be provided by our governments to aid in research and ultimately a cure. We are still human and ask that you respect us for this fact alone. Most of all, we ask that you just walk in our shoes for one day of your lives, so that you might understand us.
  11. tansy

    tansy New Member

    Dear Sandy

    I was knocked out by the letter you wrote. It was from the heart but direct as well, you definitely have a gift.

    On reading this I cannot see how anyone could not take you seriously.

    Thanks

    Tansy
  12. Member

    Member New Member

    Wow - Foreverflaring!!! God Bless You for your persistence!! You have helped sooooooo many people. I, too have printed the article and will contact my local news channel. Thanks again......be well!! luvya........Member.........Pat
  13. horsegal

    horsegal New Member

    Congratulations FF. Ditto on all the good things others have said. First, I have had tylenol 4 for pain for 2 months. My parents saw me yesterday and they hadn't
    seen me for 3 months. All they could say was how great I looked. My dad (who never really compliments) told my mom that I looked better than I had in 2 years. Now, the point to my story is.....the article that was written was good, but it sounds like FM symptoms can easily be relieved....get a little exercise, rest, and "poof" a person gets better. There is no mention of some people needing some or more powerful meds....Docs read things like this and they think they're still doing the right thing. Since I've had some pain meds I've lost another 15 lbs and I am back riding horses and I've been competing. Without those meds, I'm worthless. I agree that exercise is important. I do twice, no 5 times the amount of work and exercise I did before. I also take xanex trileptal. I'm not saying I don't pay for some of the riding. I get so body sore after a competition and it takes days to go away, tho I recently got some flexeril and taking that the night and day after I compete seems to help and I take fewer pain meds....blah blah blah My point was....the article is what I've heard from more than one doc. I, and many people here need more.

    Complimenting FF's effort, but griping about the seemingly simple "cure"

    Horsegal
  14. ForeverFlaring

    ForeverFlaring New Member

    I agree 100% regarding the supposed cure that the article gives. There seems to be a standard protocol that many physicians will follow for treatment of our symptoms. After 4 years of this protocol I can honestly say it doesn't work for me. I would love more than anything to get better. I would love more than anything to be able to go do a 45 minute intense workout. My doc along with many others does not seem to understand that the pain is so unbearable that the thought of doing the exercise he recommends is laughable. He will not prescribe anything for me for pain. If I get no pain medications, I cannot exercise and try to be active. It's a catch 22.

    The excitement I had about the story being published on the website and on the local news is because I had been sending them letter after letter for Fibro awareness day on May 12th. One month later they finally did the story. Whether the treatments they mentioned are valuable or not, it may have helped one husband of a sick wife realize she isnt nuts. It could have prodded an unsympathetic employer to think about his employee who is constantly sick. The main focus of getting this article out was for awareness.

    I didn't necessarily agree with the "cure" but I do think it was a drop of water in the bucket for awareness.

    Take Care,
    Sandy (FF)

    PS...thanks for the kind words everyone. Too bad I am not creative enough to think of a book subject...I might be able to make some money LOL