Article About Me, FM, and CFIDS In Local Paper

Discussion in 'Fibromyalgia Main Forum' started by srobins, Jun 21, 2006.

  1. srobins

    srobins New Member

    The paper did a nice write up and it is pretty long, so bear with me if I make any spelling mistakes or any other kind! The first paragraph wasn't written as I had explained it, but all in all, she did a great job! Also, I am substituting my user name on here for every place that the reporter put my full name.

    WOMAN REACHES OUT THROUGH WEB
    Woman optimistic about a cure for fibromyalgia, fatigue

    SRobins can't make last-minute plans to clean her house or take a weekend trip with her family. A medical condition requires her to schedule everything days or weeks in advance.

    Srobins, 37, suffers from Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia, two disorders widely believed to be related.

    She feels some people do not take her conditions seriously because she does not look ill, but CFIDS means more than "just being tired all the time", Srobins said. "It's really debilitating. Sometimes just getting a shower will put me in bed for hours or even a day", she said.

    NO KNOWN CAUSE
    While medical professionals have many theories about the causes of CFIDS and Fibromyalgia, no one really knows why some suffer from them, according to Dr. Ronald ****, a rheumatologist with offices in **** and ****. Fibromyalgia is a syndrome characterized by fatigue, generalized achiness and tender points, Dr. **** said. It often causes problems with headaches and abdominal cramping.

    "The majority of (CFIDS patients) have FM but their primary symptom is fatigue rather than achiness," he said. "A lot of things can cause this, so you have to rule out other diseases like depression, diabetes and hypothyroidism". The two conditions have always existed but have been defined in various medical terms over the last several decades, he siad.

    DIAGNOSIS
    SRobins learned she had CFDS when she was 21 and working 50 to 60 hours a week as a grocery store manager. A case of bronchitis and the unknown CFIDS left her bedridden for two months. "I was a total workaholic - I never took a day off", she said. "After that, I just never got well".

    Her family doctor in **** had been researching the disease and diagnosed her with CFIDS based on blood work and her symptoms. Srobins said CFIDS causes a kind of fatigue that makes her unable to "just go to bed, get up the next morning and feel ready to go again"> She often has insomnia. Although all she wants to do is sleep, it often eludes her.

    FIBROMYALGIA
    SRobins was diagnosed with FM 3 years ago but said she believes she's had both conditions all of her life. She was working as a Mary Kay sales director in September 2003, when she ended up bedridden once again. Her health forced SRobins to quit her job - the pain she suffers sometimes makes it difficult for her to walk.

    "With a disease like this, even working for yourself is hard because it's so unpredictable", she said. Now SRobins stays at home to raise her 4-year-old son, ****. She said she has had to cut back on hobbies and activities she once enjoyed like collecting dolls, helping her husband with his toy business and "anything extra outside of taking care of my son".

    SKEPTICISM
    Skepticiam from health care professionals is another challenge Srobins faces as she tries to cope with her condition - some doctors do not believe CFIDS exists, she said.

    "Some have told me I was depressed - that it was all in my head and that I needed to get some more hobbies, "SRobins said. "I went through a few years thinking it was all in my head, but deep down, I knew there was definitely something wrong". Dr. **** said one of the reasons some doctors may not consider CFIDS a legitimate disease is because there are no tests to confirm it. "It's a syndrome rather than a diagnosis", he siad.

    HIGH COST OF MEDICINE
    Last year, Srobins began seeing a doctor at the FFC in Philadelphia, which she said is the first place she felt she was taken seriously. The first doctor she saw spent an hour and a half listening to her symptoms and concerns. But good health care comes at a high price for Srobins, who had more than $8,000 in medical bills last year alone - even with insurance. "The treatments that area available are still controversial. It's not conventional medicine, so insurance doesn't pay for a lot of it", she said. She said the doctors at the FFC have given her Vitamin B12 shots and nutritional IVS and supplements that have been more helpful than the pain medications and muscle relaxants other doctors have prescribed over the years. At one point, she was taking 90 Valiums every few weeks, she said. "There were a couple years in my 20s that I don't remember very well becasue I was on so much medication", SRobins said.

    FAMILY
    SRobins said the support from her parents, who live in ****, and her husband **** helps her cope with her health conditions.

    "In March, my husband had a mild heart attack,a nd when he was home recovering, he actually had to take care of me", she said. "He's gotten used to the routine, but I know he's felt helpless a lot of times". When SRobins was diagnosed with CFIDS, her doctor told her she probably should not have children. Her pregnancy was unplanned, but SRobins said she felt healthier during that time up until two months before she gave birth. "From what I read, that's what it's like for a lot of people, but after I had **** I went downhill really fast, she said.

    COPING
    While there currently is no known cure for FM and CFIDS, Srobins said her belief that doctors will some day find one is what keeps her going.

    "I have to work very hard every day to keep a positive attitude no matter how bad I feel", she said. "I have to believe there's a reason for it".

    In February, she created a Web log that provides a form of therapy, as well as a way to raise awareness about CFIDS and FM. She updates almost daily and sometimes receives e-mails from other sufferers of the disorders who are relieved they are not alone in dealing with their symptoms.

    "I'm not able to do much, but I've always been an ambitious, hard-working person", SRobins said. "This gives me something to look forward to".

    ON THE WEB
    To read Srobins Web log, visit http://fightingfatigue.typepad.com



  2. Pianowoman

    Pianowoman New Member

    You have really made an effort to get the word out in your community. This is a pretty realistic picture; you should be proud!
    Thanks from all of us who are ill. Things like this are steps along the way to acceptance and cure.

    Kathy.
  3. srobins

    srobins New Member

    I sent out several letters to local newspapers the beginning of May for the Awareness Day on May 12th - I only heard back from one, but it was so well worth it! I hope others in my area with the same problems will feel that they have somewhere to go now. Take care!
  4. suzetal

    suzetal New Member

    That was great.You are getting the word out.That its real.

    We who all suffer from these DD need to do more to get it out there.

    I want to say a BIG THANK YOU>

    Take care
    Sue
  5. CockatooMom

    CockatooMom New Member

    the article with us.

    Congratulations for raising awareness!
  6. CockatooMom

    CockatooMom New Member

  7. phoenixrising2

    phoenixrising2 New Member

    That was great! Thanks for helping raise awareness for us.

    Phoenix
  8. Marta608

    Marta608 Member

    Very well and comprehensively written too.

    Marta
  9. findmind

    findmind New Member

    Good job, srobins!!!!

    This is one of the longest and most informative articles I've heard of in newspapers.

    Maybe word IS getting out about these dds. I hope the CDC doesn't ruin it all by relating them to STRESS, which just makes me nuts when I hear it.

    You did great, got across the seriousness and debilitation of them, especially when they are combined.

    Thank you from the bottom of my heart for your effort on our behalf!

    findmind