Need Copy of "Letter to Families"

Discussion in 'Fibromyalgia Main Forum' started by tinaeve, Oct 1, 2006.

  1. tinaeve

    tinaeve New Member

    I can't remember what it was called now, but it explained to our family and friends about our conditions. I need to give it to some of my friends and my Mom.She tells me that I am making myself sick by laying around all the time and not exercising.I have had this dd for 8 years now and I still can't make her understandIt just breaks my heart when people think you "enjoy" laying around"

    I know it is in the archives,just can't remember the name. Thanks to all you wonderful people who do understand. At least we are never truly alone,due to this great board!

    Peace,tinaeve
  2. code34me

    code34me New Member

    I have been looking for one also. I have looked under the search option and have found some but I guess I am looking for one that fits me well. I want to put one on my fridge for my family to read and remind them how I feel.

    Mabey I would blow it up into big letters and post a few around the house!

    Take care of you! Codey
  3. sues1

    sues1 New Member





    Letter to Normals 09/09/06 08:32 AM

    The Letter To Normals

    Hello Family, Friends, and Anyone Wishing to Know Me,

    Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

    I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

    You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

    Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

    Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

    I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

    Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

    And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

    On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

    So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

    Thank you for spending your time with me today. I hope we can work through this thing, you and I.

    Please understand that I am just like you.



  4. sues1

    sues1 New Member

    Explain CFS to friends and family with this "letter' 08/21/06 10:09 PM

    http://www.meao-cfs.on.ca/about_me/symptoms_affect.shtml

    Symptoms - How they affect one's life

    The following may help to explain why we have difficulty socializing, continuing to work or attending school.

    As previously mentioned, our symptoms wax and wane. For some, their illness may improve to the point where they are able to return to a acceptable percentage of recovery, albeit with caution, carefully monitoring and balancing their activities with rest. While others may plateau at a minimal level of their prior activity, alternating with relapses, and a few may gradually deteriorate over time.

    Fatigue

    The fatigue that individuals with M.E./CFS experience is unlike the fatigue healthy individuals experience after working long hours, who can regenerate their energy after a nights rest.

    The fatigue we experience does not disappear after a nights sleep, nor does bed rest relieve the fatigue. A simple task, such as washing our hair, can exhaust us. Attending a doctor's appointment may cause some M.E./CFS patients to be bedridden for days. Our legs and arms feel 'heavy', making walking exhausting.

    If you are a jogger, remember how you feel at the end of your run... that is how we feel all day, everyday. We may have periods of improvement, making this confusing to anyone observing us...but many are unable to sustain this improved level of activity, making it very frustrating for us and our families.

    Sensory over-stimulation

    An increased sensitivity to sound and lights may require some M.E./CFS patients to keep the television sound and household lighting turned very low. Sunshine may be very painful to our eyes.

    To attend a social function where there is music and multiple background conversations, we can become very disorientated and unable to understand or sort out words in a conversation. In a workplace or school, the lighting system, phones ringing, movement of people walking around us (visual motion) can leave us confused and disorientated.

    When we have experienced an overload of sensory stimulation, we become exhausted, and it may necessary to be in a darkened, quiet room for several hours.

    TOP OF PAGE

    Relapses of the illness

    As each individual who has M.E./CFS has their own unique experience with the illness and may have their own specific signals of a impending relapse.

    These 'signals' can be a sign of an impending relapse and our activity must be stopped immediately in an attempt to ward off the relapse. A few of the signals are increased confusion, increased sensitivity to sound and lights, a hand or foot becoming 'ice' cold to touch, increased hyperness, increased mood swings or increased irritability.

    This is a constant struggle for us to try and observe as there may not be any recognizable specific pattern to the symptoms. Because we were healthy, contributing members of society, it is very difficult for us to accept that we can no longer maintain our previous levels of energy. There are many times when we deny the warning signals of a relapse, resulting in a prolonged period of time to recover and restoration of our energy.

    There are times when family and friends can observe signs of an impending relapse before we recognize it. Frequently, I have heard that a family or friend has observed our pallor (pale skin tones) just prior to a relapse, and are able to cautious us that we need to rest.

    Because of the unpredictability of our relapses, the planning of, and attending social functions, can be very stressful for those who have M.E./CFS. We experience frustration and disappointment, when at the last minute, we have to cancel our plans.

    TOP OF PAGE

    Cognitive difficulties

    Short term memory loss and difficulties with concentration severely impedes our ability to function in our lives.

    The simple task of writing a grocery list may take several attempts to complete. Verbal and written instructions can be very difficult to follow resulting in frequent mistakes and uncompleted tasks.

    The sorting of conversation from background noise also may be difficult. If someone is speaking in a rapid speech pattern to us, we may have difficulty in understanding what is being spoken as our brains can be sluggish in processing the information. In addition, having to complete a task in a rushed specific time frame can be very difficult, if not impossible, again, due to the difficulty in processing information rapidly.

    Difficulty with mathematics makes handling our finances very difficult.

    Spatial disorientation means that we may frequently misjudge the distance to a table top, resulting in many items landing on the floor, or being unable to use familiar kitchen appliances.

    During a conversation, we may have difficulty remembering familiar words or names, or substituting words starting with the same first letter, such as substituting 'silver' with 'shampoo'.

    Tasks requiring sequencing is also difficult for us. At times, to follow the instructions of a simple familiar cooking recipe may be impossible.

    If we are not giving an emotional response that you would expect or want, it may that our brain is being sluggish in sorting out your information resulting in our inability to express ourselves emotionally on the spur of the moment. Please be patient with us.

    TOP OF PAGE

    We look well

    As with all invisible illnesses, when you see us out in public, you may comment that "we look well". However, what you may not realize, is that after we return home, we may be bedridden for days, and that it has taken every ounce of our strength to be in public. Our muscle strength may be weakening and we may be struggling to follow and understand your conversation.

    Weakened muscles - difficulty with stationary standing

    Standing in line at a store is very difficult and impossible for many. We need help with shopping for groceries, clothing and gifts, etc. If you are talking with us, please offer to sit down and talk to us rather than have us stationary stand, which for some, could result in a relapse.

    The cause of this difficulty is being investigated and research studies are suggesting that the cause of the difficulty in standing upright, or orthostatic intolerance, may be due to a drop in blood pressure (Rowe and Calkins, 1998), and the drop in blood pressure may be caused by having a low blood volume (Streeten and Bell), or from our having excessive venous pooling in the extremities (Stewart and Bell, 1998).

    It is not uncommon for us to faint if we have been standing for a long length of time. To help avoid this, do not stationary stand but keep 'shuffling' while standing in line at the check-out counter, or talking with someone. There are times when even opening a refrigerator door can be a difficult task.

    TOP OF PAGE

    Conserving energy

    Many of us have to decide where we are going to spend our energy each day, and when we have spent our allotment for that day, we will need to rest. This requires us to make difficult choices each day. If we do the laundry, then we may not have the energy to prepare the evening meal.

    As our friend or family member, no doubt before we became ill, you could count on us being able to go out on the spur of the moment for a coffee or grab a bit to eat in a restaurant. But now we require advance notice in order to be able to rest prior to a social event, and even then we may not be able to join you.

    Please keep asking us to join you, as we want to, but just may not be able to do it at this time. We want and need to be with our friends and family.

    Feelings of anger, frustration and irritability

    There is a myriad of reasons why these feelings can occur, but in a M.E./CFS sufferer, one of the reasons may be that if we are asked to sort out too much information quickly, or asked to do more than we are physically capable of and this can lead to frustration and anger. In addition, if we are experiencing an overload of sensory stimulation (loud sounds, bright lights and visual motion) this can make us irritable.

    Please be patient with us, as it may be the symptoms of the illness that is making us irritable.



    The above symptoms, make day-to-day living a challenge. But to the credit of those experiencing M.E./CFS, they remain optimistic and believe that researchers will establish effective treatments, and discover a cure(s) for M.E./CFS. In the meantime, they wisely re-adjust their life style and expectations.



  5. sues1

    sues1 New Member

    Here's the letter!

    Hello

    I am writing this letter to introduce you to myself and my illness. My name is _______________ and my illness is Fibromyalgia. Fibromyalgia is often a misunderstood illness. It has so many different components to it but makes the person who has it miserable. I have been in chronic pain for over 10 years. The worst of it is in my neck which is the most annoying due to the constant aching and burning every single day. This pain in my neck started four years ago. Not to mention lack of sleep makes me nauseous, dizzy and some days unable to function.

    You may have heard of this illness and maybe you haven't. One thing I will say is there are some medical professionals out there who want to say it's all in our heads, which in fact may be true because we sufferers lack neurotransmitters. The neurotranmitters being, Serotonin, Norepinephrine , dopamine, and endorphins. The substance P neurotransmitters are sky high. That is our pain receptor. Think of a radio being turned up full blast, that is how we experience pain.

    There are so many other components. For example food sensitivities, sun sensitivity, nausea, dizziness, confusion, memory loss, unable to concentrate, read, tingling, burning skin, IBS, irritable bladder, TMJ, myofascial pain just to name a few.

    Everyone who has this experiences it a bit differently. For myself, I am a difficult case because I do not respond to well to the traditional treatment of anti-depressants and anti-seizure medications.

    I have been to two physical therapists, two pain management doctors, as well as a Rheumatologist and my primary care physician. Not to mention the money I have spent on natural remedies, i.e. inversion table, exercise ball, organic foods, supplements, topical ointments, patches just to name a few. No one seems able to help me hence this letter.

    There is not enough funding or research for this illness. Forgive me for saying so but I know if this was a "male disease" there would be a lot more research and funding. For example, how many women had to die of breast cancer before insurance company's would pay for mammograms.

    I am a Paralegal. I used to be able to do 8 or 9 hours of work in four hours. I was extremely productive, efficient, and my nickname was Radar. I cannot remember what I have done an hour ago at work. I am still employed because I cannot afford not to be, which is probably why I am unable to get relief. I am a shadow of my former self. It is very heartbreaking to lose who you used to be and not get the proper understanding or care from physicians, friends, co-workers. You see this is an invisible illness. If you saw me you would say "you look fine to me."
    But just because it's invisible doesn't mean it doesn't exist.

    Doctors out there can be very insensitive. In fact my own doctor said how frustrating it was for him. Well live six weeks in my shoes is what I want to say because he wouldn't be able to handle it.

    So you see I ask for myself and my fellow sufferers for the research, funding, and awareness that we desperately need and deserve.






  6. sues1

    sues1 New Member

    FIBRO SYMPTOMS LIST

    FIBRO SYMPTOMS LIST

    The 100 Fibro Symptoms by Dominie Bush at www.fms-help.com also include her advice, which is helpful. Below is just a list of fibro symptoms for your info.

    Fibro Symptoms List

    GENERAL
    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress


    PAIN
    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain



    GENERAL NEUROLOGICAL
    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance



    EQUILIBRIUM/PERCEPTION
    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at



    SLEEP
    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)



    MOOD/EMOTIONS
    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes


    EYES AND VISION
    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision


    SENSITIVITIES
    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing



    UROGENITAL
    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)




    GASTROINTESTINAL
    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)


    SKIN
    ____ Rashes or sores
    ____ Eczema or psoriasis



    OTHER
    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)



    COGNITIVE
    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive
  7. shar6710

    shar6710 New Member

    I sent this to family members to try to let them know what CFS is like. It was well received and I think it helped them "get it". I know it doesn't mention some syptoms we have but they seemed to relate to this:

    ___________________________________________________________

    I think I've finally figured out a way to describe my illness to friends and family.

    Remember the absolute worst flu you ever had? It probably was something like this:

    Day 1: You start feeling a little out-of-sorts, have some trouble concentrating, by the end of the day you're exhausted.

    Day2: Wake up not feeling good, a little achy but get up anyway , feel worse as day goes on, maybe get a headache or a sore throat , but you go about your business until you have to fall into bed exhausted.

    Day 3: Wake up early after tossing and turning all night, you feel like crap, your whole body aches; your glands are swollen, you might have a temp, be nauseous, have a headache or sore throat. You stay in bed except for going to the bathroom and maybe heating something to eat in the microwave.

    Day 4: Wake up feeling a little better, still achy but after a post-breakfast nap you decide to shower, it leaves you exhausted and you go back to bed, you want to nap but you feel so bad you can't fall asleep.

    Day 5: Feeling a little better you decide to lay on the sofa and watch TV or read, but your head still hurts and you're still tired and foggy so you can't really concentrate.

    Day 6: Hardly achy at all, in fact after you shower you feel pretty good, maybe you take a short walk or work at your desk a little but you're still worn out and so you take it easy.

    Day 7: Wake up feeling good, you shower and start catching up on your work, you're still a little tired but you know that tomorrow you'll be back to normal.


    Now if you have CFS it's like this:

    A. Start at Day 2 and continue through Day 6

    B. Go back to Day 3 and continue through Day 5

    C. Get stuck on Day 3 for a week

    D. Continue through Day 6

    E. Repeat A through D for Years

    Shar
  8. singingirl

    singingirl New Member

    I posted one several months ago called Fibromyalgia speaks, and I will try to find it and repost in a few minutes.
  9. singingirl

    singingirl New Member

    A good read from another board 07/21/06 01:21 PM

    FIBROMYALGIA TALKS TO YOU
    Hi. .
    My Name is Fibromyalgia, and I'm YOUR Invisible Chronic

    Illness. I am now velcro'ed

    to you for life. Others around you can't see me or hear me,

    but YOUR body feels me. I can attack you anywhere and

    anyhow I please. I can cause severe pain or, if I'm in a

    good mood, I can just cause you to ache all over. Remember

    when you and Energy ran around together and had fun?

    I took Energy from you, and gave you Exhaustion. Try to

    have fun now! I also took Good Sleep from you and, in its

    place, gave you Brain Fog. I can make you tremble

    internally or make you feel cold or hot when everyone else

    feels normal. Oh, yeah, I can make you feel anxious or

    depressed, too. If you have something planned, or are

    looking forward to

    a great day, I can take that away, too.

    You didn't ask for me. I chose you for various reasons:

    That virus you had that you never recovered from, or that

    car accident, or maybe it was the years of abuse and

    trauma. Well, anyway, I'm here to stay! I hear you're going

    to see a doctor who can "get rid" of me. I'm rolling on the

    floor, laughing. Just try. You will have to go to many,

    many doctors until you find one who even BELIEVES I EXIST.

    You will be put on pain pills, sleeping pills,

    energy pills, told you are suffering from anxiety or

    depression, given a TENs unit, get massaged, told if you

    just sleep and exercise more I will go away, told to think

    positive, poked, prodded, and MOST OF ALL, laughed at when

    you tell the doctor I am debilitating.

    Your family, friends and co-workers will all listen to you

    until they just get tired of hearing about how I make you

    feel, and that I'm a real disease. Some of they will say

    things like "Oh, you are just having a bad day" or "Well,

    remember, you can't do the things you use to do 20 YEARS

    ago", not hearing that you said 20 DAYS ago. Some will just

    start talking behind your back, while you slowly feel that

    you are losing your dignity trying to make them understand,

    especially when you are in the middle of a conversation

    with a "Normal" person, and can't remember what you were

    going to say next! Eventually, most of them will be like all the doctors who say "It's All In Your Head".

    In closing, (I was hoping that I kept this part a

    secret), but I guess you already found out. . . the ONLY

    place you will get any support and understanding in

    dealing with me is

    with Other People With Fibromyalgia.

  10. mosherpit

    mosherpit New Member

    I found this one to be helpful, it is in story form and not overly wordy or long. I would do a search for it and I am sure it will come up.
  11. shar6710

    shar6710 New Member

    I just read the spoon theory and thought it was fantastic!

    Thanks,
    Shar
  12. tinaeve

    tinaeve New Member

    I want to thank each and every one of you for finding me so many letters for "normals" I printed all of them .And in the near future I plan to mail my non believing family and friends
    copies of them.Maybe,just maybe a few will stsrt to understand
    some of what I am going through. Thanks again!!
  13. wish_to_be_healthy

    wish_to_be_healthy New Member

    And guess what...No one responded...

    I don't think they knew what to do with that...What do you all think?

    I thank God I found you all and this board...because you are the only ones who care to understand...I don't think anyone on the "outside" in my life wants to know...

    Only my husband and boys(as much as they can understand at their ages) "GET IT."

    Suz
  14. cma331

    cma331 New Member


    Wish to be healthy.......

    This is in reply to your letter..of sending out " "letter to normals" and getting no response.

    I didn't get a verbal response; but i could tell by the positive reactions of my family....that they " DID FINALLY GET IT" Be patient; and see if you notice little differences.

    Carole
  15. 1sweetie

    1sweetie New Member

    I appreciate all that posted. I wanted to tag this thread so that I can find it later.

    Thanks to all that contributed.
  16. beeleaf

    beeleaf New Member

    That phrase "laying around" seems very judgemental to me, and I'm sorry you've encountered it.

    Some people are just not going to "get it" until they "have it". That's true for a long list of conditions. My mom tries to compete with almost everybody who ever has a health issue. I've had to let go of expecting anything more from her. I don't believe she's capable of being different.

    But I must say, I did get quite the kick out of her thinking she needed to have her prostate checked out because she had all the symptoms...
  17. beeleaf

    beeleaf New Member

    Just read the spoon theory. Very powerful.
  18. ilovecats94

    ilovecats94 New Member

    Different letter for normals (FMS)

    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.


  19. charlenef

    charlenef New Member

    too bad reading them makes me want to cry.most of my family wouldnt even want to read them that is the sad part i think they would rather think im crazy. charlene
  20. Gothbubbles

    Gothbubbles New Member

    These are so great! I love this!