I wrote the president!

Discussion in 'Fibromyalgia Main Forum' started by Sissy123, May 13, 2003.

  1. Sissy123

    Sissy123 New Member

    Here is the letter I wrote on our behalf. Hope you all agree and approve.

    We need help. There is little research and/or information on the media for the disease. We are treated like "its all in our head" and told to live with it. The doctors don't even know what they are telling you to live with. It is a huge problem for those of us that have it and our families. I receive 197 dollars a month for SSI. I was very happy working as a technical advisor for a nation hair care company, but this disease took me down. I even made it through a business tech course only to work for 1 1/2 months! Here are some of the symptoms we have right here in America.

    There can be 64 + symptoms:

    Physiological problems
    recurrent flu-like illness, recurrent sore throats, red and injected painful lymph nodes under the arms and neck, muscle and joint aches with tender and trigger points-up to 18 of them, night sweats and fever, severe nasal and other allergies, irritable bowel syndrome, weight change-usually gain, heart palpitations, mitral valve prolapse, severe PMS, yeast infections, rashes and itching, uncomfortable or frequent urination, interstitial bladder cystitis, chest pains [non cardiac], temporomandibular joint dysfunction [in the jaw], hair loss, carpal tunnel syndrome, cold hands and feet, dry eyes and mouth, severe and debilitating fatigue, widespread pain, other chronic illness[es] usually present [like diabetes, hypoglycemia, asthma, lupus, MS, etc....], numbness in the limbs, not painful like pins and needles, Gerds [ gastro-esophageal reflux disorder], "growing pains" starts in childhood and continues into adulthood, widespread body pain during and after physical exertion.

    Cognitive function problems:
    attention deficit disorder, spatial disorientation, calculation difficulties, memory disturbance.

    Psychological problems
    depression, anxiety and panic attacks, personality changes, usually for the worse
    emotional lability [mood swings]

    Nervous system problems
    sleep disturbances, headaches, migraines, changes in visual acuity, numb or tingling feelings, burning sensations, light headedness, feeling "spaced out", desequilibrium,
    frequent unusual nightmares and disturbing dreams, tinnitus, difficulty in moving your tongue to speak, severe muscle weakness, susceptibility to muscle tendon ligament injury, intolerance to bright lights, intolerance to alcohol, intolerance to sound
    extreme sensitivity to medications and their side effects, alteration of taste, smell, and hearing, insomnia, inability to achieve stage 4 restorative sleep, morning stiffness in the muscles and joints, restless leg syndrome, muscle spasms, muscle quakiness and shivering during/after activity or exercise, sleep paralysis [related to stage 4 deprivation, hypermobility...

    As you can see if there were a cure for this many people would be able to return to work and lessen the burden on SSI. We would love to have our lives back also. Look up Immunesupport.com and get on the message board to see what our lives are like. We need your help so we can get back to business and make more jobs ourselves. There are about 12,000,000 of us! Please let us know you are listening.

    We know you are busy, but we are your responsibility and you would have so much influence on the medical community. I myself would love to go back to the job I loved, and so would so many others.

    Thank you for your time.

    Sandra D Harris [fibromyalgia sufferer ]

  2. dsames

    dsames New Member

    Great job Sandy!!!!

    Thank you from all of us. Let's just pray someone there is listening.

  3. AutumnGirl

    AutumnGirl New Member

    Something has to be done. I think I have CFS, but doubt I have FM. But from what I've read..someone needed to speak out like that. You did an awesome job of it, too!

  4. Sissy123

    Sissy123 New Member

    I have had this DD for so long that sometimes I just get so fed up with the lack of attention given to our problems. It is like its a secret and dont tell the doctor you have it until you get a good look over first. I have had mental help for depression and I got depressed because I lost my job to this DD. I didnt get depressed first, so I Know it is not in our heads. I am kinda of a bold person at times when I have had enough so I thought writing the president couldnt hurt a thing. We need some major attention. I feel for Michael J. Fox trying to get more research for Parkinsons. I watched a special on him last night and he is really shaking badly now, but he keeps on going. Can you imagine how tired he must be at the end of the day? Well I thought I would return your reply and babble on a little bit, which I am really good at! Sis
  5. Beth37

    Beth37 New Member

    Great Job!!!!!!!!!!!!!!! (((((HUGS))))) Beth
  6. smyle4moi

    smyle4moi New Member

    in this fog i certainly couldnt have said it as elloquently and directly as you did....bravo!
  7. ForeverFlaring

    ForeverFlaring New Member

    Let us know if you get a response. I have had a letter drafted to send him for a few weeks but am waiting for facts and figures from a few fibro/cfs research sites.
  8. kellogs

    kellogs New Member

    Good going maybe if we all wrote the president we would get a reply.
  9. billiegail

    billiegail New Member

    except, I am not diabetic and I am not sure about the interstitial bladder cystitis, But I have never been checked for them. I have a lot of bladder problems and alot of stones.
    I am printing that list and giving it to my doctor.
    Thank you so much for posting it.