***WAYS TO EXPLAIN FM & CFS***

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Sharon, Apr 17, 2008.

  1. novictimhere

    novictimhere New Member

    I am going to sit down and read this to my mother, I am going to ask her about her schedule.
    After I read all of them to her, I am going to make her look at the scar and than see if she would like to open up her mind to my world.
    In reading it, gave me that strength to see if she can at the very least be a family member.
    Thank You.
    I am exhausted and I have a Doctor appt in less than 5 hours. Seriously I think I will try to sleep and show this to my Dr.
    God Bless and if any of you ever need anything and I'm here. That is a true statement.
    Its so late and now my back is hunched over and I keep dosing.
    It was so worth every minute!!!

    {Novictimhere} EVER 2010
  2. tracij70

    tracij70 New Member

    I LOVE your reply sharon..I was just told I have fibromyalgia. My husband was in the room when the dr told me. But he still dont understand. he tell me its in my head and gets mad if I don't want to do something because im hurting. Like going to haul hay etc... thank you for postin this.!!!
  3. katopya

    katopya New Member

    this one made me cry, its everything i wanted to say. i printed it out and am gonna give it ti my hubby
  4. katopya

    katopya New Member

    i printed this out also, im going to give it out freely. It says it all
  5. u&iraok

    u&iraok New Member

    Some good ones, here! I rarely try to explain because people don't get it, will forget what you told them and don't want to hear about it but I like the one by Rach87 about comparing it to an abusive partner because healthy people just don't have the empathy to relate to sickness but emotionally they can relate easier to the idea of abuse.

    Something I might use for people who don't understand that sickness is not something you can necessarily see unless you're near death (it's not a skin disesase!) involves my mother in law who recently went to the hospital with kidney problems. She had fallen and said she was dizzy and her stomach hurt. She was okay from the fall but rested for an hour, then seemed fine and was sitting there eating dinner but her niece took her to the hospital anyway. She was found to have lost 82% of her kidney function, her blood was very poisoned and she was close to kidney failure and would need to go on dialysis right away. She looked fine! We might have assumed it was just the heat, but thankfully she was taken to the hospital. When it was remarked how she looked fine, not like someone near renal failure her doctor, who was from India, rolled his eyes and said that that's an American thing, not thinking someone is sick because they don't look really really really bad.



  6. jazzleaveshernumber

    jazzleaveshernumber New Member

    thank you for describing how i have been feeling for so long and not being able to get a handle on it or explain other than 'i'm aching'....

    even typing caps seems to be an effort, you know? well, i guess you do.
  7. slasher

    slasher New Member


    perceypor,

    You posted this"

    "it is cortisol/too much of it. I have had CRPS/FIBRO for 21 years and now I am cured. I don't have thay anymore, now they have "CONCEDED" to Addison's/Cushing's. This was only after I diagnosed myself and insisted it be changed. They fought me everystep of the way - now I have pituitary tumors. They intentionally misdiagnosed me and deceived me. Please, help yourself. If you mention "Cortisol", they will immediately dismiss you. Try it. There is a cure for Fibro/CRPS, I am living proof and I have all 21 years of my "nightmare" documented/photos/recordings/original medical records "

    Could you be more specific? How does one treat too much cortisol?

    Thanks

  8. hesper

    hesper New Member

    My name is Fibromyalgia, but you can call me Fibro. What am I? I am a thief, i take you from you. I always take from you, your job, your friends, you sleep filled nights. Your confidence,your happiness, your spirit . You will try hard to lock me out, you keep changing the locks and try new things, but when i figure out your new system you find i do not leave so easy. I am a thief. We will be in battle forever, some days you will win, but other days I will. Are you ready to take me on?
    If only someone had asked me first.
    [This Message was Edited on 10/19/2010]
  9. luigi21

    luigi21 Member

    Fibromyalgia.
    What specialist have found out about the condition is it causes a dysfunction in the lympic system of the brain, sometimes called the (emotional brain). this includes the hippocampus which regulates memory which is why many of us have short term memory problems. the hypothalumus which regulates, pain, emotions, the pituary gland (which is the main gland that regulates all others) and the autonomic nervous system, which is our fight and flight response (in fibromyalgia this is switched on 24/7, which means our brains do not get stage four sleep which is when the body rests and heals itself). Therefore, it is a widespread condition because it affects the neuro(brain) endocrine (hormone) network. They don't know what causes it, but then they don't know what causes parkinson, ms or rheumatoid arithritis either, so they do there best to control it with many different medications including antidepressants, anti epileptic medication, pain medication, anti spasmodics, in an attempt to dampen down the overworking of the dysfunctional brain, and provide some of the chemicals that are lacking because of this. unfortunatley no drug to date give absolute relief, many of us find ourselves changing medication.

    Chronic pain, chronic fatigue (which is a poor description, more like overwhelming exhaustion, and insominia are common symptoms and added to the diagnostic procedure, but there are many more, involuntary limb movement, restless legs, memory problems, digestive and bowel problems, urinary problems (frequent), anxiety, depression and agitation. Its a very difficult illness to live with, mainly because its invisible, and very misunderstood by some medical professionals so its best to find someone familar with the condition, research continues but is poor at best.

    The pain sometimes feels nerve like, as if all the nerves have been yanked out of your body and are left raw and open (like when the dentist hits a nerve in your tooth, now apply that to your whole body and you may get a slight idea), skin often feels bruised, sunburnt, itchy (more nerves nearer the skin). Sometimes it feels like knives being stabbed into different parts, other times as if ulcers are covering every muscle, tendon and ligament. Basically, because the brain controls the nerves the nerves control the muscles and you can then suffer excruiating pain, as well as muscle spasms. You grieve for the life you once lived, you battle it everyday, you hate yourself and everyone, and everything for having it. Some days are better than others, but its with us 365 days a year. Stress techniques are obviously going to be helpful for the pure fact that the brain is switched on all the time, some meditation, relaxation, and cognitive behavioral therapy or psychotherapy can be helpful in coming to terms with it. I feel any one living with this is very brave, its not easy believe me, its really isn't easy.
  10. keke466

    keke466 New Member

    Oh you're so right. I'm still working PT at a small rural hospital on the night shift and I feel as if I'm slowly losing the battle with this horrible disease. I'm more depressed all the time and miss more work. I miss my old life so much I can't hardly stand it anymore. It seems the older I get the more I think about it and what I've missed out on and the more depressed I become. I'm single and soon to be 54 with no kids and noone to help out with finances if I was completely unable to work. I want to file for SSD but I'm afraid of what will happen in the meantime and then I'm scared of what will happen to me once I don't work at all and see noone. It's a never ending battle that noone understands,even if they say they do. The nurses I work with see several people come in the hospital with it but they just don't get it. I've gotten to where I say more abt it than ever before.
  11. ginirhodes

    ginirhodes New Member

    All I can say is O M G!!!!

    THANKS SWEETIE
  12. ginirhodes

    ginirhodes New Member

    What a word, my God That was great writing.

    Bless you
  13. ginirhodes

    ginirhodes New Member

    Thank you for that writting it hit home. Oh the tears, If I could only get my family to understand. My husband says he does but he doesn't at all. It hurts when he says things 'Oh whats wrong with you now', 'or how long are you going to stay in bed, all day', why don't you have dinner ready', are you going to clean the house. I do what I can when I can! and thats the way it is.
  14. ginirhodes

    ginirhodes New Member

    Thank you for that writting it hit home. Oh the tears, If I could only get my family to understand. My husband says he does but he doesn't at all. It hurts when he says things 'Oh whats wrong with you now', 'or how long are you going to stay in bed, all day', why don't you have dinner ready', are you going to clean the house. I do what I can when I can! and thats the way it is.
  15. JayJayO

    JayJayO New Member

    Wow, I know how tough it is for others to grasp. In their attempts to be encouraging and they probably think sympathetic, they often offer suggestions(?)... like "just" do this or "just" do that...like I wouldn't "just" love to be able to do this and that! My saying something along the lines of--to have them imagine what it's like--it's a lot like having a really bad flu or mono... but for a lot longer time!

    Best wishes,
    JJ
  16. penneyn

    penneyn New Member

    'I can make you tremble internally' That part of the sentence absolutely floored me, because I have complained to my doctor about an internal tremor, which she said is a symptom of depression, even though I didn't seem depressed to her. She put me on Prozac, and it helps with the tremor, but I don't understand why she hasn't diagnosed with Fibro. I have a plethora of the other symptoms, but I don't seem to have the main one -- the tender spots... but I do have days when my upper arms feel like someone has used them for a punching bag. I am always tired, and I have a hard time sleeping... I only sleep about 2 to 2 1/2 hours before I wake up, usually because some part of my body is jerking around like someone has stuck a cattle prod to me. I seem to be permanently stuck in that 'hit by a truck' feeling you get when you're coming down with the flu.

    I just passed out of the menopause from hell, so my greatly reduced hot flashes and night sweats aren't too bad right now. I have trouble concentrating and I will forget things in a heartbeat. I wake up some nights feeling disoriented and out of place.

    Does this sound like some of the same issue that those with diagnosed fibro have? What can I suggest to my doctor to do in the way of tests to determine if I have it? Any suggestions would be appreciated
  17. raven36

    raven36 New Member

    I do not have Lupus, at least they aren't sure if I do or not yet because I can't afford the test they want to do to find out.
    However, they do say possible lupus or multiplsclerosis, definite fibromyalgia, idiopathic polyneuropathy, acid reflux disease, pernicious anemia, bipolar and a few other things. I have NEVER been able to explain my health to people. I don't look sick. I don't act crazy. People don't understand when I say I can't go out or I'm tired and they get frustrated when I have to ask questions multiple times because I don't remember I asked them already. You have no idea how what you have written here has made me feel. Almost liberated! As though some unwanted invisible bond has been severed! Oh if I could hug you I would like to squeeze the stuffing out of you! lol Thank you. Thank you so much. I can't wait for my family to read this.
  18. PhatKat0

    PhatKat0 New Member

    I think that about sums it up. My friends & family just don't understant. They nod and smile, but I know they secretly think I am just a lazy hypochondriac.

    Yesteray I spent about an hour mowing the lawn and light yardwork, etc. The rest of the day I felt like I'd been hit by a truck! I'm stuck now in bed watching movies all day. How boring. Id much rather be at the beach or riding my bike. It will be a few days, before I can even think about doing anything even remotely active, like emptying the dishwasher or folding laundry. I wish I could afford to pay someone to do these things for me so that I can spend what precious little energy I have doing something enjoyable.
  19. granmaw09

    granmaw09 New Member

    WOW this was very well said! I wish I could email this to my family and husband and daughter.
  20. babysnake

    babysnake New Member

    Hello

    This is my first post after i nearly cured myself from Fybromyalgia/CFS. The disease is knows also as Myofibrositis.

    I can't really express the joy that i feel now after so many years (12 years) of suffering from it.

    The point is: The disease is NOT a physical disease as i tought, it is a LACK of NEUROTRANSMITTERS in the CNS (central nervous system).
    After very long periods of stress (> 6 months) , the tissues in the brain that produces these neurotransmitters (and maybe also the receptors) are nearly destroyed by long-term stress. (Serotonine, Dopamine, etc).

    The information from the body to the neuroreceptors in the brain now comes altered and in pieces and the brain can't understand most of it and transforms it into pain because it is an invalid status for it.

    If you really have symptoms like i had (pain - dizziness - pseudo pain) in ALL your body that moves from place to place, permanent tiredness, lack of energy and is nothing localized but it moves (but most of it is in the shoulders - neck -head-spine) area then you have it.

    I was really feeling all the time that i have little to no control over my hurting body and sometimes i was wondering how can i walk. - and i also had sexual problems (i'm a boy) as not feeling any pleasure from the sexual act and no excitement for it. Also my head felt like a baloon all the time.

    I tried everything in these 12 years, i saw many doctors but they all shrug.
    I've done tons of analysis and they all were good except for the hypofize hormon - wich later i found it gets high when there are dopamine problems.

    I searched and searchd on the web until i found a naturist doctor saying is from chronic mononucleosis and i went and i did the test - i had it (Epstein-Barr virus) but it was just the marker. The disease is long gone because the body naturally fights it and kills it. So the naturist lady gave me many vitamins and herbs. Well the herb helped but only when i took it. When i didnt i was awful again. It is the astragalus - echinacea herb that really work - you feel much better- but dont solve the main problem.

    Later in 2009 when i tried again and by recommendation from a friend i went to the lady doctor that cured me i showed her the herbs that help me and told her the whole story. She for the first time diagnosed me officially as FM/CFS, it was the first doctor and knew about it. She works at a big hospital here in Romania.
    She said: "Of cours these herbs help you cause they are anti-oxidants" and prolong the life of the neuotransmitters.

    So, i was skeptic at the start when she said it is not a physical issue and all cause i know in not a loonie. But really she convinced me to do as she said.

    She told me: Exercise every day got to gym - bycycle - fitness or swimming, or as much as you can. You can keep your herbs and take them. And eat foods rich in tryptofan (bananas turkey etc). And massage she told me but i didnt do massage.

    Anyway i did like 2 times a week for 6 months gym - bycycle and shoulder - back exercises with small weights - 2-5kg and really kept at it.
    i didnt feel much better at the start but in time and after i finished these 6 months i was starting to feel much better( in the next 6 monts when i took a break from the exercising my body started to feel better with time) . And i also gave up herbs and vytamines cause i didnt need them to feel good. I was already much better.

    Then in this winter i did again 2 months of gym and now i can tell you i feel like 80% cured in real.

    So, i write now cause now im sure what im talkign about. Before i wasnt sure and i didnt wanted to maybe mislead anybody.

    So, forget the meds! GO TO GYM or swimming at least 2 times/week and really work your body with bycile and realtively small wights - ask the instructor for shoulder and back pain what exercises to do. The movement and prolonged light-effort really stimulate regeneration of the neurotransmitter tissus in your brain. And eat well.(tryptofan rich foods - serach on google)

    If you are feelign aweful you can take astragalus-echinacea herbs as they are natural anti-depressants (powerful antioxidants - delay the oxidation of neurotransmitters ) - but this is only a temporary solution. Exercise! This will cure you!

    Your head hurts because the brain has no neurotransmitters to work with, to live with and all the vessesls in your brain are dilated to get more neurotransmitters from the blood.

    This is the only thing that worked for me. In the hope i helped you and you start to cure and feel better i wish you to really do so.

    Christian.