FAMILY NONBELIEVES/ SICK OF IT!

Discussion in 'Fibromyalgia Main Forum' started by pacotaco, Apr 14, 2009.

  1. pacotaco

    pacotaco New Member

    HI MY FELLOW PAIN PALS. YOU KNOW WHAT IRKS ME SO MUCH? IS WHEN I AM TOLD "EXCERSISE, YOU'LL FEEL BETTER" OR "HAVE YOU TRIED WALKING A MILE TO STRENGTHEN YOUR LEG MUSCLES"". GEE, AM I STUPID? IF I COULD DO THOSE THINGS, I'D BE WORKING STILL. BETTER YET, WHY WOULD I CHOOSE TO SUFFER IF I CAN DO WHAT WILL HELP ME! THESE ARE NOT FIRST TIMERS EITHER. THEY'VE KNOWN MY ILLNESS FOR SIX YEARS. AAAAAAAAAAAGH! I'M SICK OF IT.
  2. Debra49659

    Debra49659 New Member

    I posted this for someone else today and I thought maybe it might help you as well!



    If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.

    WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

    1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

    2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

    3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

    WHAT YOU SHOULD KNOW ABOUT ME

    1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

    2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

    3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

    4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

    5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

    6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

    7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

    8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

    9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

    10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

    11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

    12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

    I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.


    If that doesn't work you may have to ask them to back up, keep their opinions to themselves...in short shut the frick up! You have a doctor and you do not need useless advise.
    You may need to tame that down at bit where needed:)

    Deb


    Forgot to add...would you please turn off the cap lock? Some folks can't read it without getting headaches...Thanks and welcome to the board I notice you have helped many of us here with your advice:)

    [This Message was Edited on 04/14/2009]
  3. TigerLilea

    TigerLilea Active Member

    If you ignore the comments and don't react, then calmly change the subject, people will soon get the hint. If someone insists on keeping the conversation going, tell them you don't wish to discuss CFS/FM with them as they obviously don't have any understanding of the subject. If they still persist, politely tell them to find someone else to argue with and walk out of the room.

    Also, next time that same person complains to you about not feeling well, calmly tell them, "go exercise or walk a mile to strengthen your leg muscles. You're always telling me how much better I will feel." - LOL - Trust me, they won't like having that thrown back at them.
  4. lynncats

    lynncats New Member

    WOW, that is pretty much what I thought after reading this post. I actually cried. So true, so true!! Take Care!
    LYNN
  5. Debra49659

    Debra49659 New Member

    I wish I could take credit for this letter but I found it posted by ilovecats94...and I thank her for this because it is all so true:)

    Hugs,
    Deb
  6. lynncats

    lynncats New Member

    I'm just glad you posted it, it hit the "nail on the head". Hoping you are having a good day!!
    LYNN
  7. pacotaco

    pacotaco New Member

    oh thank you so much debra! i wish there was a way that i could post that poster on me and then i wouldnt have to say a thing!! It reads the very truth and it grts right to the heart of it all for everyone in a situation where they are not belived in. its great and i feel so good about it. thanks again.............~~~~~~~~~~~~~pacotaco [my chihuahuas name]
  8. pacotaco

    pacotaco New Member

    i just love it and you know i never thought of throwing the same words back at the dingys that think im just sitting around working my imagination. I laughed so hard that i didn't mind the pain in my side. it is hilarious to me. thanks so much!
  9. faithinlove

    faithinlove New Member

    OMG this letter made me cry. I am going to let my son read it. I could not find anything more true than those words.
    thanks and God bless...Faith