Lets change our "SPEAK' our attitude and get results

Discussion in 'Fibromyalgia Main Forum' started by sues1, Feb 18, 2007.

  1. sues1

    sues1 New Member

    NEW SPEAK new attitude new results 02/19/07 02:48 AM

    Every Dr., every article, anything aired on TV...and we do it also....
    Feels the need to explain that many doctors thinks our illness is mental in some fashion or another.

    I see articles where Fibro and ME/CFIDS had childhood abuse, some with sexual abuse. I did not. I am not taking away that abuse is not to be taken lightly. But I do not think that is the cause of our illness.

    Lets take a poll, who loves green beans, a cook out, skating (at least when young), drink water. Did or do color their hair and used make up. Played baseball? Colored in coloring books?

    I bet the poll numbers would all be larger than the abuse issues. So should we blame it on any of those things?

    Lets stop that. Even to friends and family. That way if they no longer get that message they will stop using that "knowledge".

    Lets get to the serious facts. Let us speak only of the illenss. Let us be more educated on it. We can be taken more serious if we are not making these comments on the mental aspects.

    Everyone in the normal world has heard this. Lets stop keeping that alive. It is as we are making excuses. Why bring it up? Does not help us to do so. Only hurts us more.

    We need positive talking on the subject. This will carry over where others are not speaking of a mental connection.
    The more serious we are taken, the quicker we will get some positive help.

    WE NEED to vent here and talk about it. That is different. But to the "outside" world. Lets only promote what is needed to be known and to be taken seriously.

    Blessings and Love...........Susan
  2. sues1

    sues1 New Member

  3. jole

    jole Member

    I agree completely! Not one poll has proven to be even 90% effective, so none of them are the real reason for our DD. The truth is, there is no known cause. Period. And until there is, we should stop guessing. Yes, we all know it is a physical component - which has nothing to do with our upbringing or lack thereof.

    I for one am tired of the "oh, I must have that too, I hurt" replies. Soooo.... from now on, just a general overview of the disease when asked is sufficient from me. If they want to know more, they will ask. If not, oh well.
  4. suzetal

    suzetal New Member

    I agree .Nothing happen to me to cause FM /CFS.

    Thank You for posting this and its well put.

    Sue
  5. mezombie

    mezombie Member

    Yes! We know the truth! Not just how we feel, but the research that is out there and that the CDC chooses to ignore.

    Stovetop--great idea about us making people aware of this which you posted on another thread.

    I know the history of the CDC's research -- why they focused only on genes that correlate with stress. I've been meaning to pull this together and post, but I'm not in great shape at the moment.

  6. pw7575

    pw7575 New Member

    Talking about how people relate those things to our illnesses only keeps those theories floating about and gives them life...even if we are telling people that those theories are wrong.

    I don't even talk about those theories with people. When I talk about CFS I tell people what new research has shown and what new medical science there is proving that we are ill. And what physical viruses, illnesses, etc that they are saying may be causing us to be ill.

    I don't at all talk about how people think stress or abuse etc contributes to the illness. That wouldn't help us and it doesn't apply to me.

    I wasn't stressed out or a work-a-holic before I became ill and I was not a victim of any sort of abuse. I think those theories were people grasping at straws to somehow prove that this is all somehow in our heads.

    Take Care,
    Pam
  7. pw7575

    pw7575 New Member

    I think this was an important post. This goes exactly with what I was trying to say in my posts about an associated press article about CFS that kept talking about the doubt of CFS.

    It doesn't matter if they say not many doubt it now or whatever. All people hear is the word doubt and that puts doubt in their minds no matter how big or small it is there.

    Like Susan said...I don't think it should be brought up at all because it is NOT relevant what people used to think or what some still think. This is a REAL illness and most people know that now so there is no reason to even bring up that aspect.

    I am just SOOOO angry and tired of being treated like a mental patient. I had a horrible doctors appointment yesterday where she tried to give me anitanxiety meds and send me to a psychologist instead of treating my illness.

    I am SOOO tired of that...tired of being treated this way...tired of doctors and people in our families treating us like crap and thinking we aren't really sick.

    The only way to stop people from doubting the illness is for EVERYONE to STOP talking about the doubt and start talking about the fact that this is a REAL illness.

    Just cause someone knows of CFS or it is mentioned on TV or in an article doesn't make it a good thing. If it isn't shown or thought of in a better light than it isn't good and it isn't helping us.

    Some people just get so excited to see CFS mentioned in an article that they don't even care what is said. They just say oh we are getting the word out. Well that isn't good if the word we are getting out hurts us more than it helps us.

    Please think about what Susan has said here. I think it is VERY important.

    Take Care,
    Pam
  8. happycanuk

    happycanuk New Member

    I don't think FM is caused by any one thing. It is a name given to a bunch of symptoms. Abuse could cause it in some people, an accident in others, stress in others. I personally think it is connected to the spine in some way. I think stessors get overstimulated, from stress, pain etc, and then the pain goes helterskelter. It will be very interesting to see if they ever come up with a reason to this darn disease.

    I wan't abused, but I did have extreme pain from OA in the facet joints and hip. Didn't have FM before that, and it followed within a year.
  9. sues1

    sues1 New Member

    I agree with both of you. The pain and all use up the brain chemicals and makes us worse. I do get worse when there is a family member with a problem and such.

    Yrs. ago I was having terrible pain. Dr. just could not find the problem. But he believed in me. (Same one that yrs. later gave me the Fibro and later ME/CF DX). He had me go to Cleveland Clinic. They turned me inside out with exams, tests, etc. Finally saw a "Shrink" (can not think of how to spell the proper word right now). He was insisting that I was just unhappy in my marriage.....yadda yadda. He had me take some mental tests including a long written test that I had to give answers on.

    They were so surprised (and I think disappointed) that I came through it with flying colors!

    So my Dr. said he was out of options, could he do an exploratory surgery. When I came out of being under, the Dr. was there holding my hand with tears in his eyes. He said, "I'm so sorry. You had growths that was wrapping around organs and your spine. It took a long time to get it all. I know you could not stand, sit or lie without pain.
    How did you keep working?
    I said......."Did I have a choice?"

    I've had other things like this that Drs. did not think I had a problem at first, or was found by other Drs.

    We are all different and how each thing affects us is different. But united we can become one loud voice. Prickles is our #1 Rooter. I've had yrs. of experience, but she is so young. Admire her I do....very much.

    Blessings.........Susan
  10. pw7575

    pw7575 New Member

    I definitely agree that some anti anxiety meds do help some people with these illnesses. However the reason I was angry about her suggesting them to me is because I have been having leg cramps and heart palpitations with some mood swings for 5 months and since she couldn't figure out what the problem was she just wrote it all off as anxiety.

    I KNOW that these new symptoms are not an anxiety problem. Something is off which is causing all three. Possibly some sort of deficiency or a thyroid/adrenal problem. I have read that any of those can cause the problems I am now having but she wasn't interested in any of that.

    Plus I told her that I am extremely sensitive to meds and she didn't care about that either.

    So yes you are definitely right that I need a new doctor. I do believe that those meds can help people with these illnesses. I just don't think the meds are the answer for what my symptoms are right now.

    Thanks!
    Pam :)
  11. Kal-El

    Kal-El New Member

    There is an unfortunate thing happening in the CFS world and that is anxiety/depression is not being seriously considered a true 'symptom' of CFS. I always had some slight form anxiety and depression problems growing up, but nothing that ever kept me from living my life in any significant way. However, as soon as my CFS began, the problems immediately became 10x worse...almost instantly! It's to the point where I don't know which is worse, the fatigue or the anxiety/depression. Not only that, the feelings I get when experiencing them have also changed. It is like the CFS took it to a whole other level that completely overwhelms me and I know without a shadow of a doubt that CFS is responsible for it.

    Doctor's don't seem to understand that the two are absolutely connected and that it isn't a seperate issue. However, if the CDC's studies taught us anything, our bodies are completely inefficient at managing stress and that should be a key indicator that our anxiety/depression issues are a direct result of that. What's worse is that, if left untreated, these symptoms cause even MORE stress that can worsen other CFS symptoms over time, especially fatigue.

    So, in light of that, I would say it is entirely appropriate to use antianxiety/antidepressants or seek psychological therapy in CFS because until we get at the heart of this illness and know how to repair it from the ground up, it's the best we have. At the very least, properly managing the psychological aspects of our illnesses will prevent further worsening of the physical aspects.
  12. Jordane

    Jordane New Member

    It is true that most Dr's, not all of them,mine,thank you Lord,believeds me,others treat this DD like its a MENTAL PROBLEM.

    But ,then again,I find once you are classifide as having Mental P.,then just about everything you go see them about is just in *your mind*.

    I do take Ant-Anxiety meds,I do have a history of child abuse.But, that DID NOT cause CFS,FIBRO,CHEMICAL SENSITIVITY, ARTHRITIS,etc.

    This IS REAL, what we have IS NOT in our minds.

    BUT, HAVING THESE DD's,causes our nerves to be bad, because we have to fight so hard for people to see and understand that YES,WE ARE SICK!!!errrrrrrrrrrrr

    We are not lazy, we do not have the flu, It is not in our heads!!!!!!!!

    Take Care ALL!!!
    hugs, Jordane
    [This Message was Edited on 02/23/2007]
  13. sues1

    sues1 New Member

    Someone posted once that not taking care of our pain made it worse. I am not quoting exactly, but I hope you get the general idea. I was "taken back" as I was not taking any meds to speak of. I kept having adverse reactions to all.

    But the bottom line was that our body/brain chemicals gets deleted and we have nothing to fight with.

    Anyone with a better handle on what I first said above, pleae reply.
    ==================================================
    I have a doctor now that has me on Cymbalta, one a day. It helps. Also a med to help me sleep and it helps. But I still have sleep problems and much pain. Since then I have been Dxed with PD (Parkinson disease). I take Siminet and the shaking is next to none since. But I am not certain I have PD even so. Because so many of us has shaking and weakness. I take only one a day, the least to take, as two made my mind "race". That was okayed by my Dr.

    My point is that my Mom was treated for nerves years ago, until a new Dr. said it was PD. She was then only on PD meds. In researching PD I found that the first indication of PD many times is depression. After all the head is where the problem is. Also same with diabetis, depression runs there also. Probably with many diseases.

    But I feel my CF/ME fibro is in my head, the pressure and all I feel there. DX on PD is more recent. I got the other two DXs about twenty yrs. ago. Not a joke that this DD is depressing in itself!

    If more medical folks would REALLY listen to us, we would advance in knowledge and help much faster.

    Blessings and Love.......Susan
  14. sues1

    sues1 New Member

    bump for others to read
  15. matthewson

    matthewson New Member

    I have to second what you have said! Although in my case I have FMS. I definately suffered from mild depression from the age of 12, but I did not have any pain problems until a hysterectomy 3 1/2 years ago triggered this. And subsequently the depression got worse and had to be treated.

    Just as there are subsets of these DD, there is a subset of people like us for who had depressive issues going into this. So, to suggest we not talk about a mental aspect to these DD is disregarding that subset of people who HAVE had depression issues and arrived at these diagnoses.

    By suggesting we not talk about the mental aspects of this illness to outsiders, smacks of lack of understanding of mental illness. Mental illness IS an illness, not a character flaw! This IS part of my FMS, as it is of a huge number of people here on this board. I talk about my depression AND FMS to everyone I know. Only by talking about it as opposed to keeping it in the dark, will people begin to understand that mental illness and FMS is just like any other physical illness such as diabetes, hypertension, etc. Like I said before, it is not a character flaw!

    Sorry, I feel very strongly on this subject.

    Sally

  16. 139864

    139864 New Member



    Hi sues1
    This is an article from "PUB MED". I think you should read it ...Our scientists / researchers are still learning about chemicals and various autoimmune illnesses / diseases. And I for one ,don't think it's going to be too long before they have all of the answers
    Stay WELL
    Brenda Uk


    BACKGROUND: Many biological and chemical agents have the capacity to alter the way the immune system functions in human and animals. This study evaluates the immunotoxicity of 20 substances used widely in work environments.

    METHODS: A systematic literature search on the immunotoxicity of 20 chemicals was performed. The first step was to review literature on immunotoxicity testing and testing schemes adopted for establishing immunotoxicity in humans.

    The second step consisted of providing a documentation on immunotoxicity of substances that are widely used in work environment, by building tables for each chemical of interest (benzene, trichloroethylene, PAHs, crystalline silica, diesel exhausts, welding fumes, asbestos, styrene, formaldehyde, toluene, vinyl chloride monomer, tetrachloroethylene, chlorophenols, 1,3-butadiene, mineral oils, P-dichlorobenzene, dichloromethane, xylene, 1,1,1-trichloroethane, ethylene oxide).

    The third step was the classification of substances; an index (strong, intermediate, weak, nil) was assigned on the basis of the evidence of toxicity and type of immunotoxic effects (immunosuppression, autoimmunity, hypersensitivity) on the basis of the immune responses.

    Finally substances were assigned a score of immunotoxic power.

    RESULTS: Tables have been produced that include information for the 20 substances of interest, based on 227 animal studies and 94 human studies. Each substance was assigned an index of immunotoxic evidence, a score of immunotoxic power and type of immunotoxic effect.

    CONCLUSIONS: This matrix can represent a tool to identify chemicals with similar properties concerning the toxicity for the immune system, and to interpret epidemiological studies on immune-related diseases.