Misconceptions..........Please read

Discussion in 'Fibromyalgia Main Forum' started by AC77, Apr 18, 2003.

  1. AC77

    AC77 New Member

    I just want to say a few things. I am gonna need to cut down on my posting a little because of residency. I am also volunteering at an ALS unit 1 day a week too, in addition to the hospital and walk-in center at the Hosp. I love it there--even though it's stressful and I feel like I am going to break. haha.

    I often say things that are abrupt, taken as rude, politically incorrect, etc... I am not going to apologize for my personality but I will try not to be so "opinonated" I often find myself having to explain my wording, as it comes off the wrong way :-(

    Like I said. I am here to learn and heal and be healed and this board, without a doubt has the best support network I have seen on the net! It's great. I think I am going to try the ZMA that everyone talks about on here.

    Just a little bit on "wives tales" that I bring up so often. Or I will say husband tales, as to not offend anyone.

    I hear a lot of people mention that something, a supplement for example works on a cellular/Molecular level. Everything work on this level! From Air to vitamin C. Saying something works on this level is misleading and makes things sound like they are better than they are. And sets people up to getting ripped off on buying something.

    CFS, is mostly as disease of women. Not true. Men are usually to stigmatized by society in general to admit any health concerns. That may be one reason, amoung others that men tend to die earlier than others. Oh, how often a doctor asks a man patient, "how long have you had pain in your chest" and he answers, "5 years!!!" Women are a little smarter when it comes to seeking help early. This is just something a lot of people notice and is psyhologically conditioned.

    I am dresseped because of the Pain, not the depression causing the pain. This is true most of the time but not always. Keep in mind 10-20% of the adult population is depressed anyway without any other disease. Chicken or egg theory. I don't know. I think CFS patients and FMS are predisposed to depression amoung other things. I know I am!
    This disease/syndrome can be most definetly depressing.

    FMS pts should not exercise. Well, that is all individual. There are some people who can go for long sprints and not have a flare, while others can barely walk a flight of stairs. Know your limits and test them! Lack of exercise DOES cause muscle atrophy and depression. Not to say you should exercise, but maybe light stretching for a few days, followed by a brisk walk and working up, as you can will keep you in shape and stave off the possibility of diabetes.

    Diet doesnt make a differnce. Wrong, humans were never designed to eat so much sugar or at least as processed as it is. Humans from the beggining of our existance had such a vitamin C rich diet we lost our ability, along with fruit bats and Guinea Pigs to produce it ourselves. Every other mammal can produce thier own Vitamin-C (ascorbic acid). We were meant to eat about 80% fruits and vegetable. At least medical historian say so. The evidence seems to be there.

    Meditation and prayer have no bearing on our status. Wrong, because all humans are spirtual beings. Doesn't matter if you believe in God or not. We all need to believe in something higher. True faith does heal the mind and body. Studies also show this. That is why placebo rates in trial often have high rates of remission. People believe they are going to work. Placebos are real medicine--well at least for many people. Love has healing properties. What else is there more important that it? Moms know. So do lovers.

  2. Solstice

    Solstice New Member

    which I share.

    Also, I tend to look for the good and wise in each of us. We all make mistakes or our words can sometimes be taken in a way that will aggravate someone. Your intentions are obviously good and that is what is important.
  3. Mikie

    Mikie Moderator

    It's great posts, filled with wisdom like this, that makes me hate to see you come here less often, even though I do understand that you have other obligations. I also hope you have a life besides medicine and being a valued member of our board.

    You have really been a God send for us, like Madwolf. I fear we really do take advantage of our medical professionals here, but that is indicitive of the poor treatment so many of us receive at the hands of our own docs. Please know that you are making a tremendous difference in the lives of so many here. I hope that helps you feel that we all appreciate how much you have done for us.

    Come when you can; we will miss seeing you here.

    Love, Mikie
  4. PatPalmer

    PatPalmer New Member

    I agree with every word, great post.

    Love pat.
  5. JLH

    JLH New Member

    My daughter is starting her internship. I know how little free time you must have.

    You don't need to apologize about coming to the point, being abrupt, and indicating your opinion. Everyone has a right to their own opinion and there will be many who agree and disagree with it. But, as the ole saying goes, this is what makes a free world!

    It's nice reading intelligent and informative material. Hope you still have time to come back often.
  6. kar1953

    kar1953 New Member

    I was about to say I agree with your thoughts on exercise, then realized I have to say I also agree about diet, and prayer & love - well sonny gun - I just agree with your whole post! I usually read any post by you. I want to learn what I can from the most informed. There are quite a few others on this board who are so well informed & willing to share with those of us who are new to this whole DD thing.

    I thank you all........Kathi
  7. FibroNan

    FibroNan New Member

    I very much agree with everything that you have said and I really hope that you'll pop in whenever you get the chance. You are a valued part of this board now but I also understand that you have other obligations. Good luck with your residency. I'm betting that you are going to be one heck of a doctor.
  8. ozgran

    ozgran New Member

    I really appreciated your post. It is great to have our medicos here on this board and ones who understand how we feel and can give us knowledgeable opinions. I am trying hard to improve my health status using much of the techniques you talk about. Good luck with your residency and volunteering. Happy Easter. Love Ozgran.
  9. sare12

    sare12 New Member

    just want to echo what many have said already.i think your post was great and wish you all the very best with ur residency.I pray all goes well for you...u have a good heart.Look forward to future posts.God bless.Sare.x
  10. AC77

    AC77 New Member

    Thank you all for the posts. I didnt mean it as a Dear John letter. I will be here, just a tad less often. I meant it for everyone on here to maybe help them. Maybe give a little faith, in a world so absent of it, at times it seems
    [This Message was Edited on 04/19/2003]
  11. jstbrznby

    jstbrznby New Member

    This is why I keep comming back here. I have found more real help here than I have in all the time I have struggled with trying to figure out what has happened to me. I feel better now than I have in 6 years. Thank you for the skinny of it all and good luck with internship........Pam
  12. JadeFire

    JadeFire New Member

    I find your misconceptions interesting.

    -First on the account of more women than men having CFS, I find this to be true. Yes, society has ingrained it in the minds that men should be the stronger of the sexes (and are not, I know this for a fact) but never, when home, have I seen a man keep up this appearance! Never! My brother or father gets a cold and the world has to bend over backwards, I have FMS and CFS and I have to 'be strong' and 'deal with it', a normal man can complain about his 'headache' and if I even mention one complaint a day I'm a whiner. They don't notice! When you have FMS/CFS, those occasional complaints are more like relief. I bottle up my feelings extraordinarily, to the point that if I cry one tear I feel nauseated by the realization that I have so many uncried tears that need to come out, thus I stop (crying) because THAT is overwhelming.

    I grew up with almost all male friends, and continue to have men dominate my social spectrum. It is non-stop, how their wives/girlfriends make their lives difficult, their headaches/backaches, etc. I don't mind, but the tables are turning, society is more accepting of a 'weak man', or maybe I should say women are more accepting.

    I'm sure they'll more hesitant to mention a pain around their guy friends, but never around a woman (unless they're trying to get her attention in a positive way).

    -On diet/exercise, I know for a fact as much as we make diet seem important, it is not. A 'good diet' to someone anymore seems to be looking for low-fat/non-fat products, and maybe eating a granola bar and yogurt for breakfast instead of something else. Forget that the granola bar has chocolate chips and full of sugar.

    We're obsessed with calories and making sure we don't consume so much fat. I'm 19, I've been through 4 major car accidents, broke my neck, had sugery, broke my wrist, sprained an ankle. I can lift 350 pounds yet if you looked at me you'd just see an overweight teenager, nothing special. I've done trying stretching all my life, every morning when I wake up I stretch my legs and pull my foot as close to my chest as possible. I'm flexible, have awesome reflexes and strong, yet I have FMS, CFS, anemia, Rheumatoid arthiritis and other ailments. I can do amazing things, but if I do even a bit too much my pain levels go extremely high and alls I can do is sit/lay down while half my brain is somewhere in pain land. I'm only half there. I've tried picking swimming back up, and other cardio exercise and all of these makes me fatigued and helps my pain to sore. I spent most my life pre-FMS/CFS/RA in a pool, there is no 'lack of desire' or laziness about my not swimming frequently anymore. It's one of the things I hate most about being sick. Stretching doesn't bother me, so long as I don't hold any one position *too long* or stretch the same muscles too much. Yet normal and even easy aerobic exercise makes me feel awful.

    I'm at a loss on this, I hear on this board and other places how exercise is the best medicine for FMS, yet when I do it the next day I can't even shower because the pain is too much to stand so long to wash my hair. Maybe if I wasn't in a flare it'd be ok, I'm not sure.

    -on vitamins/herbs, I'm a bit lost on this too, I've tried just about everything and nothing has made such a significant different. The best things I've noticed are fish oil, vitamin e, and a folic acid. I've tried just about everything else, and while they do a little, I am impatiently awaiting to get on Medicaid and can barely afford the medications that I desperately need and do make a huge difference. Maybe this is the same with exercise and me, things work wonderfully for everyone else, yet I work like crazy trying to find something to work for me with no success. I do think people overrate things, but when its from a person who's in pain, I can understand. It's easy to get overenthusiastic about a product or vitamin or herb, in a world where pain is something you just deal with, escape from that pain is like a cruel pipe dream. People want out, you can't blame them for getting so thrilled over tiny improvements.

    -also on diets: I've tried so many diets it makes me laugh. I've tried high carb diets, low carb diets, no carb diets, no animal meat diets, only fruits and veggie diet, etc. and nothing seems to make a huge difference in how I felt. The best one was the only fruits and veggie diet and I'm on that as much as I can (I say as much as I can because fruits and veggies are so expensive).

    -On depression: I find this one the funniest, it is so true, and I love you for saying that! I know five people closely who suffer from depession with FMS/CFS, and I'm loads more cheerful and upbeat than them and many 'normal' people. *laughs* I just manage to find the cheerful things and make more out of them then they're probably worth. Heh. I do suffer states of depression though, and most the time I feel a heavy weight on my chest. I'm pretty good about not letting pain get me down, when it's so horrible instead of thinking about it I do something I find pleasureable and can halfway sink into. I've gone without heavy pain killers almost the entire time I've battled this stuff (3 and a half years) even though on general my pain averages at 7. Actually, for people with will power and determination, I sorta recommend this. I can block out considerable amounts of pain. Once, I even accidentally cut myself instead of a carrot and kept sawing without noticing I was obviously hurting myself rather badly. But, on a positive message, it really makes life easier when you can block out at least a certain level of pain without reaching for some pill or another. And... because of it I have a lot of emotional tolerance now than ever.

    -On God and meditation: my belief in God is kind of a strange thing. I do believe in him and believe most everyone needs a certain amount of spiritual contact in their lives. I don't think we should use prayer however to 'ask for help'. It seems like just another excuse for us to wait and hope someone/something else will fix our problems. That's just asking for trouble. I think prayer should be seen more in conversational terms. Even if God can't reply, it's a good idea to have a little talk sometimes. While it seems fine to whine a lot to God as well (lol, I doubt he'd/she'd/it'd mind) asking 'him' to fix things seems a bit pointless. I doubt God works that way. I do really think meditation and any form of stress relief is really vital. I can't tolerate the normal form of meditation, since I fall asleep (lol, that's so embarrassing to confess) but I do have my own ways. However you do it/it is done is fine, but that kind of thing is very necessary.