Discussion in 'Fibromyalgia Main Forum' started by nanaof4boys, Jul 29, 2008.

  1. nanaof4boys

    nanaof4boys New Member

    Just wanted to say hi and give a little background. I have been around the world (the doctor world that is). I was diagnosed with fibromyalgia almost 20 years ago. Then 4 years after that, a search for my birth Father found out that I actually have a connective tissue disease called Marfan. I was no longer having any pain or other problems so I discontinued the treatments for pain. Since Marfan mainly affects the heart, that became the focus of the doctors. Marfan kills-usually the Fibromyalgia does not. Rocked along for about 10 years with joint pain but not enough to go back to check on it. Woke up one morning dizzy, sick to my stomach, numbness, extreme fatigue, tingling and pain. Went to the doctor. Referred to neurologist who diagnosed B12 deficiency and began B12 shots each month. This went on for 6 years until the week of July 4th became a very bad week. Since then, I have had a multitude of problems including severe vertigo, muscle spasms in my face, hands and feet, numb hands and feet to the point that when I cut my feet, I felt no pain-My husband noticed the large amount of blood, bowel issues, loss of balance which caused me to fall several times, dropping things and memory issues. The doctor did tons of blood work which indicated my B12 was fine as was everything else. He sent me to the neurologist who did MRIs of my head, neck and spine thinking I had multiple sclerosis. The MRI was clear. He referred me to a rheumotologist who diagnosed it as fibromyalgia complicated by Marfan. Back to where I was 20 years ago but this time it is much worse and it does not seem to be going away. So here I am looking for information, someone who understands and for advice on how to explain to my husband and grown daughter that I can not help losing the keys and I can not help being so tired.
  2. WhoSaid

    WhoSaid New Member

    Funny thing I have learned about explanations, your friends don't need them and your enemies won't believe them. Having said that I suggest...
    Sit down and write a "special" note to each member of your family and tell them exactly how you feel and what is going on with you. Let them know how very much you love them but you can't "do" for them like you have in the past.
    After that don't worry about it.
    You can do little things to help yourself.
    Start with always keep your keys, eye glasses, brush, and things you need often in the same spot at all times. eg always keep your keys in your right hand pocket your glasses on your computer table... well you get the idea. Just doing that will cut down on the unnecessary stress.
    As far as the fatigue goes all you can do is your best. Know that your best is going to change from day to day so don't push yourself and don't stress when you just don't have it in you today. Tomorrow is another day.
    Good luck...
    Gentle hugs
  3. Pansygirl

    Pansygirl New Member

    A warm Texas welcome to you and a very gentle hug.

    With my husband I ended up encouraging him to help me do research on FM and that helped him to understand a little better. I still have to remind him that I need help. I honestly think it's a constant learning event.

    I'm learning that it's hard for anyone even our close relatives to really understand what we have if they have not dealt with chronic pain before.
    I'm having to learn to pace myself.

    You've come to a wonderful place with caring people and lots of information.

    Gentle hugs, Susan

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