This board....I gotta give a lot of credit where credit is due...

Discussion in 'Fibromyalgia Main Forum' started by Melanie_Ann, Jan 4, 2003.

  1. Melanie_Ann

    Melanie_Ann New Member

    I must admit, when I first starting visiting this site last March, I thought it was just another place selling vitamins, but over the last few months, I've come to realize that this is the MOST valuable resource of information and support that I could possibly have. I've learned more information here than I could have ever possibly imagined. I've also been educating my doctors. So many doctors are next to clueless about CFIDS & FM.

    You know, every time a doctor tells me "I don't know", I remember the beginning of "And the Band Played On". When the CDC went to that village and the young man said "You're doctor, how you don't know". I guess I just can't wrap my mind around the fact I have something that is not fully medically understood. Ya know?

    Ah well, have gone threw anger, denial, learing how to cope, and adapting to it.

    You know what my doc said to me last February....

    "You have something called Chronic Fatigue Syndrome. There is no cure and there is not much that can be done except alleviate the symptoms. This is your problem and you're going to have to learn how to deal with it. You will probably never feel the way you used to feel but you will learn how to adapt".

    Man that was a hard pill to swallow. I was soooo angry at this man for months. But looking back, I appreciate his honestly. But gee, maybe he could have sugar coated it a little? lol


    Great board with wonderful people!

    <big cyber hugs>

  2. pam_d

    pam_d New Member

    ...the majority of what I have learned about fibromyalgia has come from this board (in addition of great books, many of them learned about here)----NOT doctors! What I like is the exchange of ideas----some of us use more meds, some only supplements & diet, some exercise----and every combination! So we can really learn a lot here about ways to cope, and just maybe even thrive, with these illnesses.

    I agree, great resource & great people--many thanks!!

  3. 1maqt

    1maqt New Member

    There are a lot of things we can do for this DD! Been dealing for 28 yrs. Kkeep on trying to find out what works for you!

    Getting to the point of accepting , is good, I went too far
    a few yrs ago and gave up. Dr. didn't even recognize Fms as anything. Hard Row to Hoe... Had 6 children.... Husband had
    Exec job. No time > Today is much different. The Info on here has been a wonderful blessing, and an eye opener for me. I agree these people are great> Glad you're dealin'

  4. teach6

    teach6 New Member

    Glad you found us. Yes, your doc was right that about all we can do is treat the symptoms, but my doc also told me he could help me feel better and he will not stop until I tell him I'm satisfied with where I am! That was the missing piece of your doc's comment to you.

    Your doc's comment is somewhat like the comment made by a therapist my ex and I were seeing as a last ditch effort to salvage our marriage. After about three visits she just came out and told us there was no way to revive it and it was over. I have since learned that most therapists may think that to themselves, but they help you come to the conclusion on your own, after trying several things. That makes all the difference in the world.

    One of the greatest things I have done in the past year is participating in CFIDS self help courses that are offered on the internet by a PWC, who has about recovered, named Bruce Fisher. I highly recommend them. You can learn more by doing a search on the internet using those words.

    Here's to a continued recovery for you. We have to accept our illnesses and learn to live with them, but we don't have to accept that there is nothing we can do to help ourselves feel better and improve our quality of life.

  5. Melanie_Ann

    Melanie_Ann New Member

    You're right about the missing puzzle piece. This doc is someone who I've been seeing for over 15 years. He's... how to say it properly. He's a great doctor, good bed side manner, but something is missing. I don't know how to say it tactfully.

    Like the skin rash, which me, my husband and son all had and now is clearing up. Don't know if it was viral, something in the house or what.

    He walks in, looks at my rash, says "looks like drug reaction or allergy reaction"..."ok do you have any ideas", "i don't know" and walks out.

    A little abrupt I think the word is.

    How the hell can you get anywhere when you get a 5 minute slice of time with a doctor. I know I am over exaggerating the point here. But you get my meaning.


    [This Message was Edited on 01/04/2003]
  6. Melanie_Ann

    Melanie_Ann New Member

    What is DD? I can't find the acronyms. Sometimes I can't find my way out of paper bag, I swear.

    Ever feel like someone spun you around really fast blind folded and then said go find the door? rofl That's what it's like sometimes :)

  7. karen55

    karen55 New Member

    = darn disease or damn disease, depending on your frame of mind.......
  8. Vicque

    Vicque New Member

    Dear Mel...The responses you have recieved are all so true. You can read a thousand books on this dd, but truly some of the best information you will ever get is from this board. I have a very supportive Doctor who has kept me pain free. When everyone else thought I was crazy he believed me. I have noticed the progession of this dd, and I believe that is a lie that it will" go away"....I hope you will respond to my Writing a book message I posted. I need all the input I can get, because sounding like a broken record, I want everyone's voice heard. For too long we with the "invisible disease" have been labled mentally unstable, depressed, yada yada....@#$@#$. Hugs to you....Vicque
  9. Shirl

    Shirl New Member

    I do believe most of us went through the doctor thing at one time or the other. I have been at this Fibro journey for 20 plus years now, and finally came to the conclusion a couple of years ago that if I didn't find out what I could do for myself I was not going to get any better.

    I started reading books, the few that were available then, and learned what our bodies were 'missing' that may cause this. The meds were making me sick anyway, I had to find a different approach to help myself.

    I started there, then I found this board through buying Pro Health's supplements. Well, thanks to this board, I am now at the very least 80% better than I was in many years.

    You are right, this board is just not about Pro Health's supplements, its about real people who get relief from all directions from one another!

    I bought this companies supplements before I had a computer. I read about Pro Health in a book on Fibro.

    My husband bought me the computer, and thats when I came to the board through the webaddress in the catalog! I sort of had the 'cart before the horse' here.

    When most of us tell you about a product (Pro Health or otherwise), its because we ourselves have used it and gotten results. We are not 'selling' nor are we 'pushing' Pro Health's products.

    I personally used many of their supplements, and I will name them when I am asked, I also take other brands and will tell you those also.

    I am not selling for Pro Health, I am simply trying to help anyone I can. Their products are honestly the greatest, highest quality, best priced around. I buy from four different companys, plus a local health food store.

    Many of us on this board were getting great results from ZMA that is pattened by SNAC company, Pro Health now sells this same product for us at a $5.00 savings in price!

    Now I noticed they are also selling 'Coral Calcium', which I paid an arm and a leg for (did not use it yet)from a the tv commerical, its an amazing savings on this too.

    My husband takes Chitosan for weight lost, well I paid as much as $60.00 a bottle for this, now Pro Health has the same thing for a third of the price with the exact ingrediants in it.

    Glad you find this board helpful, and hope you stay around, someday one of us just 'might' find a cause and a cure right here, who knows???

    Shalom, Shirl

  10. Mikie

    Mikie Moderator

    Every treatment I have found is because of the wonderful and caring members of our board. We have some very knowledgeable people here and they are most generous with their time.

    Love, Mikie