Discussion in 'Fibromyalgia Main Forum' started by vivian53, Jun 2, 2009.

  1. vivian53

    vivian53 Member

    I feel totally overwhelmed when I read many posts here. So many people are so well educated about this DD, it's causes and treatments.

    I feel very slow and ignorant. It's not just fog but I can't isolate what I need to do to get healthy from all the various symptoms, tests, supplements, rx drugs, and theoretical causes I have read about.

    I understand about treating our underlying causes. I have had the Gulf War Illness virus for 14 years I guess. I have cervical problems. I have lumbar issues. I know all these things are effecting my FM, or is it vice versa? I am beginning to be pretty sure I have thyroid issues and poor adrenal functioning.

    I admire all of you scientific thinkers, and just thinkers in general. During the time I quit researching causes and cures 6 years ago and now, so much has developed, thinking has changed.

    I am really going to have to play catch up but don't feel like I can make the right choices at this time. Or maybe it's that I am afraid I won't be able to grasp it all.

    So then I have to ask myself 'how badly do you want to get better?'

    This is just a venting post mainly but does anyone else feel like this?
  2. skeptik2

    skeptik2 Member

    I know how you feel. It's really hard to understand a lot of the medical terminology and knowledge coming out now.

    I do this: I print out a page and then I don't try to LEARN it (very hard for us). I just read it casually and set it aside. Later, I look at it again.

    I actually go one sentence at a time, think about it, and then read the next. That way, it's not so overwhelming.

    I do not mean to put anyone down in any way, but NOW is the time to learn and help us all take ACTION.

    You can just go to the CFSAC website given by Quayman, and download the latest conference videocast, let it play in the background, and you will be COUNTED in the quest for new paths to understanding these dds.

    You won't even have to understand what they are saying; just get counted as caring, and you will be helping all of us.

    Best to us all..
  3. gapsych

    gapsych New Member

    I don't think you are giving yourself enough credit. It has nothing to do with how badly you want to get better. What with fibro fog it is sometimes beyond our control and this fog comes and goes. Thus sometimes we can't process things. Then there is the exhaustion and pain on top of all this.Is it any wonder we get overwhelmed?

    You have a lot of compassion and it shows in your posts.

    I have a background when it comes to experimental design and psychology, but that was years of school and sometimes, depending on how I am feeling, I also feel overwhelmed and there are days where I feel a lot of t.hat knowledge has been lost. So sometimes I have to "brush up" on topics that I would have readily know before this DD. We all have different skills/knowledge to contribute to the board whether it has to do with years of school or our personality such as compassion and comfort.

    One thing that helped me was to s see a therapist who works with people who have chronic illnesses. She is not only a therapist but a nurse. She has dealt with so many people with DDs, knew so many resources, and was up on the latest medical information. Sometimes I would think, why didn't I think of that? Well, she has had years of working in her field. Her insight did not happen in one day. She was great helping me make some decisions in my life.

    There is no "one right answer".

    The amount of information available in our time is so much that it is hard for anyone to keep up with everything, whether they have our DD or not.

    I hope this makes sense. Today I am only able to deal with things hour by hour and I have learned not to feel badly about it.

    So take care.

    [This Message was Edited on 06/02/2009]
  4. Catseye

    Catseye Member

    just not in the medical profession. But don't let that stop you. Check out beatcfsandfms.org for protocols and doctor recommendations of docs who can do treatments. I found mine at becomehealthynow. I'm over the worst.

    You want to get better, that's obvious, you just haven't found the right health care expert yet. This site should tell you what you need to know. In fact, it may make you wonder why treatment has eluded you thus far since it's all spelled out.

    good luck
  5. Janalynn

    Janalynn New Member

    Don't feel badly for not being able to fully comprehend all that is written. If I had CFS, I'd have a heck of a time absorbing all the information that is out there. (in here). I really don't understand it myself. Admittedly I understand more about Fibro.

    Especially with so many people giving different treatment paths etc., how do you know which one is right for you? Can imagine how daunting it is.

    I take one day at a time, trying to get through the day feeling as well as possible. In my opinion (from the information I have gotten from my Dr.s) Fibro is more a problem with the pain pathways/receptors. With CFS it seems like it is more fighting infection, following all different protocols, people traveling to see specific Dr.'s, taking anti-virals etc. Wow.

    Don't question how badly you want to get better because you can't digest all the information.
    I don't think that is any indication.

    Pull what you can understand - ask if there is something specific you need to know or a more detailed explanation in laymen's terms.

    We're all in a tough spot with these misunderstood diseases. It's a thousand times worse for us, since we don't feel well, sometimes can't think clearly.


  6. Debra49659

    Debra49659 New Member

    I feel retarded...for real. I try so hard to understand all the gobbleygook, but I hardly even get passed the first paragraph before I click out of the link.

    I trust my doctor and have decided long ago to go with whatever he prescribes!

    It took me probably close to 15 minutes to put these few sentences together:)

    I used to think I was smart!
  7. vivian53

    vivian53 Member

    How was your lunch with your friends the other day? I'll bet you had fun.

    Thanks for the link, I'll check it out. I think I have thyroid issues even though they didn't show up on my TSH results. I don't know if there is further lab to do that would allow my doc to make a more accurate dx but I will ask him next week.

    Yeah I am doing what you are, enjoying the good days and weathering the bad ones. Remember when we used to live differently? Oh well that's the past and this is the new reality.

    you take care too my friend

  8. vivian53

    vivian53 Member

    I appreciate your posts. I don't feel like the only one who feels overwhelmed by all the new info.

    Yes the way I have to learn now is exactly like you do skeptic2, I have to read the material, then leave it, and later go back and reread it. Then I absorb more.

    I will go to the website and watch the video. I have always been an activist politically and for people with Mental Illness, why not for this DD?

    thanks and pain free days to all,
  9. vivian53

    vivian53 Member

    I always enjoy hearing from you. You are so right, there is no one right answer. I guess that is part of my problem.

    I also wrote this topic after reading the whole thread entitled "what worked for me."

    You and I have similar backgrounds, I got both my undergraduate and graduate degrees degrees in psychology and taught at the university level for years. Since I got this DD though my ability to process information is not what it once was. And I wasn't all that smart to begin with!

    I've done the therapy thing. I was a therapist for over 20 years. In order to belong to the professional organization I was a member of I had to be in psychotherapy. Besides that I really liked it. I still go for a tune up whenever I need it.

    You do understand and I am grateful for your response. I will follow you example to live it and learn it as I can.

    peace to you gap,
  10. vivian53

    vivian53 Member

    Thanks for your response, and the link.

    I went there and read it all last night. That's a whole bunch of information but you are right it does give it out in a organized, step by step method.

    I am very interested to know it what way have you been helped? How did you decide which type of disorder you have? Did you have to spend all the time and money the site suggests you may have had to?

    any help will be appreciated
  11. vivian53

    vivian53 Member

    Now I'm the one who is going to tell you that you seem smart to me. We have talked on other boards and I know this for a fact. But..............

    By the same token I know just exactly what you are saying.

    big hugs to you,
  12. Debra49659

    Debra49659 New Member

    Thanks for the hug, I really needed it today:)