I'm new here......

Discussion in 'Fibromyalgia Main Forum' started by Jacqulyne, Apr 13, 2009.

  1. Jacqulyne

    Jacqulyne New Member

    I was told on Mon 4/6,the day before my b-day, that I have FM. I have been fighting this for 3 years and going through all kinds of testing. Nothing shows up. I will be undergoing muscle bi-opsies tomorrow to make sure there isn't something more going on. FM has turned my world upside down. I went from being a VERY active, never still a minute person, to feeling like I am 95 years old. It is horrible. I'm still trying to wrap my mind around all of this. What little I have read on here and on other web sites, describes exactly what my life has been like for the past 3 years. Pain, fatigue, brain fog, tingling sensations, numbness, weak beyond words, off balance when I try to walk, forgetting stuff, having a hard time sleeping, having to base everything I do and if I can even do anything, on a "we'll see how I'm feeling" instead of a yes or no answer. I was told by some family members not to let the doctor's give me a "made up disease such as FM" . But this is real, it is NOT made up! So now I don't even want to tell anybody I have it. How do you explain a disease that is so hard to even describe? If anyone reading this has any words of encouragement they can offer I would really appreciate it.
    Thank you so much. Maybe some of you who have been dealing with this for awhile can offer some ideas about how to educate the family and how to deal with the day to day stuff. I try to push through the pain and fatigue and force my body to do what I want it to, but that only seems to make things worse. Then it takes several days to re-coup and even get a little bit of strength and energy back. So all ideas will be appreciated.
    God bless...............
  2. satchya

    satchya New Member

    Welcome to the board. I'm pretty new here myself, and I have found comfort in knowing others have experienced the same "crazy" things I'm experiencing, though of course I'm sorry anyone else is, if that makes sense.

    I am probably the wrong person to ask about what to tell people your diagnosis is, and I may get flamed for what I'm about to say. I won't hold it against anyone here if they are offended by my answer to you, I struggle with it myself. My family and my very, very close friends know I have fibromyalgia (they've seen me experience it and know I'm obviously not faking it). But everyone else thinks I have Rheumatoid Arthritis. That is what my rheumatologist initially ran months of exhausting tests to rule out, so that is what everyone outside my close circle knew. They all know I see a rheumatologist frequently, they know I'm on daily nsaids and pain relievers. The symptoms are very, very similar. So, while I never outright lie about what I have, I also haven't gone out of my way to explain that it's actually NOT R.A. I try to only use the word "flare" to explain how I'm feeling if I can't make it to a get-together, campout, etc. They don't need to know it's an FM flare, not an RA flare.

    I watched my Mother struggle with FM for so many years, before it was even acknowledged by doctors, let alone the general public. I remember how relieved she was when the internet was fairly new and she was finally able to connect a name to the symptoms she'd been experiencing for years. She told everyone it was FM, and was completely derailed career wise until she moved to another city. (And she is an extremely talented lady). She was treated like a crazy person. I can't live like that. I know I should speak up and educate and explain and advocate, but I don't have the energy or patience for that.

    That is my answer, I hope I don't make anyone furious, but that's where I'm at with this dilemma, and I wanted to give you my personal opinion.

    Also, my Mother's Mom (so my Grandmother) has had the same symptoms all her adult life also. She was tested multiple times for RA and Lupus. Finally her doctor told her she must have either RA or Lupus but it wasn't showing up on the tests. She insists to this day that she has Lupus but her symptoms are exactly Fibromyalgia. She refuses to use the word Fibromyalgia, it still has such a stigma and she and her friends of her same generation still don't "believe in it".

    In the end, do whatever you have to do to get the support you need and the life you want to live. I'm not saying lying is the right course of action, but I am saying we don't always need to tell all the truth to everyone we know. I hope I'm making sense, and I hope I won't be judged to harshly for this answer.
  3. 3gs

    3gs New Member

    welcome(i think)

    this is a great site for info and support. there are some great letters on how to explain this to people. if they dont and most normals dont get it i recently looked at some youtube videos that i'm thinking may help family understand better.

    biggest advice i would give is don't push yourself! there will come aday when you crash for the worse. rest all you can.
    Has your doc cked you for vitd levels? most of us are pretty low. supps are a big part of this and help most.

    please know you are not alone and we understand.
    god bless
  4. rockgor

    rockgor Well-Known Member

    Welcome to the board. Lots of nice people here to talk to.

    Some of our posters know a lot about meds, tests, etc. I don't. I also have Alzheimer's so
    not too much point in studying. But, I have read a couple times that FM and CFS DO show up
    on tests.

    The problem is these are tests that are generally not given. And they are expensive.

    Remember that Lucy episode where she had to tell the truth? Ethel and the girls were asking
    her personal questions like how old are you, etc. What Lucy didn't seem to grasp was that
    she had no obligation to answer their questions. She could simply have said, I'm not answering
    those questions.

    And you have no obligation to give anybody your medical history. (Unless it's your dr. asking, I suppose.)
    Tell people whatever makes you comfortable. Some people you can tell more than others.

    And don't waste your time arguing w/ people who display their ignorance by saying things like,
    "Why don't you just snap outta it?!" Or, "My cousin had that. She got some meds and it all
    went away in a month."

    You will exhaust yourself if you try and persuade people. Let 'em think whatever they want. You
    have no obligation to put up with them.

    If you want a break from talking about these DDs (darned diseases), come over to the chit chat
    board. We talk about kids, pets, TV, music, recipes, etc.

  5. Debra49659

    Debra49659 New Member

    Welcome to the board, I hope you visit often you couldn't find a better group of people:)

    Letter to Normals (alternate letter)

    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.


    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.


    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.
  6. Pansygirl

    Pansygirl New Member

    a warm welcome to you.

    This is a wonderful place . The first thing I did when I was diagnosed was to read
    and learn all I could about FM.
    You need to decide who you want to tell about FM .

    I have some relatives that get it and some that don't. I don't have the energy to
    educate them when they think they are right. So you need to do what you feel is

    As someone with FM we have to take care of ourselves and I agree it's hard to go from being active to not very active at all.

    I was very active and I still have two kids at home so I have
    had to learn to rest when ever possible and pace myself if I'm having a busy day.

    I've also had to learn how to say "no" and that is hard for someone who likes to help

    I also learned fairly quickly that the pain pills helped me to be able to function .

    this is a great place to ask questions. it's also a great place because we all "get it"
    since we all have FM .