Why I quit frequenting the boards

Discussion in 'Fibromyalgia Main Forum' started by RSP, Dec 6, 2004.

  1. RSP

    RSP New Member

    I came to this message board a few months ago and felt supported, reading what other people were experiencing and how they were coping. I saw a lot of love put into this site and I still do. The problem is that there are many subjects that get brought up and even if there are three hundred people that read the message, there may be five people that agree with one person's opinion or experience. I did not take a medication as early on as I should have because of negative responces that people had on this board experience. Later, while reading up on the med, I found that what others had said happened to them was not even listed as a side effect. I do blame myself for being so naive, and I am only bringing this up because there may be people like me that do the same thing. We need to remember that nothing takes the place of GOOD DOCTORS and reading up on meds. I also am not ignorant enough to believe that the GOOD DOCTORS have all the answers, I am only saying that we should be more responsible and objective about what is written here. God bless all of you. You have made life easier on me. I think if we use this as a support board and not as solid proof that we will get more out of this board. I especially like that we have prayer night because above all else, I know, without a doubt, that prayers are answered and that if there is a cure found, it will be because of the many of us and our family and friends that pray for us.
    Thanks for your time,
  2. tandy

    tandy New Member

    Its great to get others opinions. But thats excactly what they are "OPINIONS".
    And more important: Always follow up with drs. ....never assume that what one says here is concrete and good enough for me !! I always research everything.

    Thanks for the reminder/warning~ And I hope to see you pop in once in awhile~ Hope your doing well these days :)
  3. roadkill

    roadkill New Member

    Thank you RSP for your perspective. I agree with you and it is letters like yours that keeps us all safely and responsibly going in a good direction. We need each other to fine tune our direction.

    Sometimes we come here looking for support to follow in the direction we have chosen for ourselves and then find the opposite.

    Its not what we expected. We need to see that when people write their warnings it is from the motive of wanting to protect you from harm. Granted, it was ill-founded. Just like we are learning that even some of our godlike doctors advice can be astoundingly ignorant and impotent, we come to understand that people perspectives are not infallible rules to be followed. Ultimately we must take back our power and decide what decisions we are willing to shoulder the burden of responsibility for.

    In the end I experience the consequences of the decisons I make and when it doesn't work out I need to know that I made the decision for my benefit and not to affirm someone elses philosophy because they are not the ones who have to live with the decision, I am.

    Your awakening will help all of us to take back our power and find ourselves.
  4. Greenbean7

    Greenbean7 New Member

    and great feed back.

    I use this board for support, but seldom for advice. I ask for input on meds, etc., to broaden my base of knowledge and experience, but always make my own decisions, with my doctors, regarding what is best for me.

  5. craziC

    craziC New Member

    I agree 100% with what you said. So many times I see members taking medical advice from other here. It is wonderful to come here for support and discuss our treatments but our overall treatment should be discussed with our doctors.

    No one here is able to diagnoses others and we all need to remember that. Thanks for posting this issue.

    Hugs & Health,

    RSP - Please give all of us another chance. I hope no one was rude to you or anything. I'm sorry you're wanting to leave and that is your choice. But your opinion and voice is much wanted here.[This Message was Edited on 12/06/2004]
  6. jewel3113

    jewel3113 New Member

    I love this board, but I am also never going to take the *opinions* of others as fact. Heck, it takes doctors 12 years of school to earn that right, and even they are mostly stumped by our illness.

    Don't get discouraged by *opinions*....they are meant well, and for me personally, I welcome each and every one of them. I'm so glad to be part of this great *family* of fibromites/CFSers! LOL

    Hope to see you on the board again and again, voicing yours!

  7. zenouchy

    zenouchy Member


    Thanks SO MUCH for your post! A good doctor will not claim to have all of the answers- they are there to help you troublshoot your illness based on their medical expertise.

    Everyone is so INDIVIDUAL in how they respond to medicine, so if someone lists a side effect, it's just not going to be relevant to the person seeking advice. I've seen A LOT of folks who say Effexor caused weight gain, but if you look at mayoclinic.com & webmd.com, it says that one of Effexor's main side effects is weight LOSS.

    There are so many things in a person's chemistry and other things that could be going on with a person that could cause weight gain. (I'm really not trying to upset anyone, and anything is possible.) I'm just agreeing with your post and giving an example. I've been on Effexor for years and lost weight. (but hey, that could be my individual response...)

    Thanks again.

    Good health, be well,


  8. Greenbean7

    Greenbean7 New Member

    I'm so glad you said that about Effexor. I started it last week and was worried because Zoloft made me gain. So far I have no appetite and can eat very little! That's a side effect I can live with. Won't hurt me to lose 10 to 15 pounds.

    Thanks for you "opinion"!

  9. victoria

    victoria New Member

    I've found this board to be of immense support, which is what the purpose of it is (I thought). I never let anyone's negative opinion of something stop me, cause I know all too well we are all different.

    But this board has not only been invaluable as support, but also for suggestions and info. All of which I then independently research and then confer with a doctor if it is something I want to pursue and need his/her support.

    This is no different than what I do when a doctor recommends something to me.

    Bottom line (to me) is we have to be responsible for our own health, and our own decisions.

    I always assumed this board is not named "ImmuneSUPPORT" for no reason?

    All the best,
  10. lovinlifeinAK

    lovinlifeinAK New Member

    But I love coming to the board and seeing - or receiving others OPINIONS. It has helped in further research. Regarding meds as it has been repeated so many times in several post, I always research several different sites to see if it is something I want to discuss with my doctor. It is nice to know others have had some of the same reactions as you have. Kind of like a little comfort that your not a freak.

    If we were all the same - made of the same chemistry - we wouldn't have met all these wonderful people here. As there would not be a reason to continue researching to find a mixture that works for our bodies.
  11. Mikie

    Mikie Moderator

    I post reminding our members that while it is fine to ask about others' experiences with various drugs and treatments, it is only the opinions of people who are not medical professionals.

    I often suggest people contact their docs when they have questions, new symptoms, side effects, etc.

    The best advice I could ever give anyone here is that each of us is responsible for whatever treatment we decide on with our docs' supervision. We need to be proactive and involved in our own health care as partners with our docs.

    Most of our members find it very helpful to find out what others have experienced with various meds and treatments, but that should not take the place of professional medical consultation. I think most of our members realize that.

    Love, Mikie
  12. Tigger57

    Tigger57 New Member

    I use this board for support and as a sounding board. By no way do I believe that what works for one person will work for me, but it gives me more ideas to research on my own and through my doctors.

    I'm sorry you left for awhile, we need everyone's ideas and input.... and support. Basically, we need support. There are so many people who either don't understand what we go through or frankly think we're faking it (don't get me started on that one), so I truly believe we need support in one another.

    I'm glad you're back and that you told us why. It's good advice for all of us. Just because something works for one person it should NEVER be taken as gospel that it will work for everyone.

    Here's a (((((((((((((((((((((((RSP)))))))))))))) hug for you.
  13. Mikie

    Mikie Moderator

    Very well said.

    Every single treatment which has been so valuable to me is something I learned about here. Of course, I then researched each treatment and then discussed each one with my doc.

    I am eternally grateful for all I have learned from our members here. There is a lot of collective wisdom here and it is a valuable resource.

    Love, Mikie
  14. violarose1

    violarose1 New Member

    i come to the board w/ an open mind. we will miss anybody that comes and goes because i think each person has had a story to tell, so we are not alone. we are all in different stages of accecptance of our illeness, or treatment, or degree of being ill.
    personally its the persons journey that brings me here vs. medical treatment. Wonderful ideas for easing pain, and other ideas that are not medical but help nonethless.
    if you miss us, we will give you lots of hugs, good luck
  15. mariee

    mariee Member

    Best wishes to you.
    I, for one, consider these boards to be a blessing.
    I have learned about magnesium, Epsom salt soak, some good stretches, how to help my knots loosen up, how to get a better night's sleep, how to talk about my illness, how to have a laugh and enjoy life.
    I have always tried to preface my experience w/ a med, or any other thing with..."this is my experience..." That is usually what people are asking for.
    Don't forget your pharmicist. Mine has caught a potential bad mix of meds. She knows me well and keeps track of meds for me...
    Hope you hang around and enjoy the journey a bit more w/ us.
  16. zenouchy

    zenouchy Member

    I haven't quit frequenting this message board and don't intend to. I appreciate everyone here and the very hard work of our moderators.

    However, I do get quite concerned for people who seem to use this message board as their first line of medical defense rather than their local doctors and nurses, and I hate to see that happen. In fact, at times it can be rather scary.

    I've seen people ask if they should quit drugs they are taking, if they should increase or lower their dosages of meds, or if they should be paying attention to severe side effects of medications. They/we should obviously consult with our doctors FIRST. This is what concerns me. I don't think leaving this message board is the answer. Rather, I believe education about how to approach one's healthcare IS the answer.

    Much Love,


  17. slowdreamer

    slowdreamer New Member

    Ultimately me but I would have to say that i wish i had known about this board in the first few years of my DD.
    At that stage I was busy being the paying guinea pig for so many mainstream and alternative health practitioners it was no joke.

    Remember RSP..we are all trying to manage symptoms and to a certain extent I believe everyone is guessing...Having this board with such a wealth of "anecdotal data" is a goldmine for me.

    [This Message was Edited on 12/06/2004]
  18. fairqueen

    fairqueen New Member

    But, it's only a tool. Since I've just recently been diagnosed with FM, I find it helpful to ask others if what I'm experiencing is something they might also have experienced.

    I agree with you that no one should rely on the Board rather than their physician. I think that goes without saying. But, when I read about a medication that I might also be taking, I'm interested in what other people have to say about it. Just interested--not influenced.

    I also think this board has another important use. It's a safe place where people can come to release frustrations and get support from others who know what they are going through.

    Please don't take any of this the wrong way. I think you brought up some very important issues. I hope you decide to post again. Thanks.
  19. FatherTroll

    FatherTroll New Member

    orginally you use the term "good" and "Doctor" which like Groucho Marx so aptly put it reminds me of military intelligence, basically an oxymoron.

    If I were going to criticize the board & I wouldn't..I might however offer a loving appraisal.

    I skip back here now and again, and I find often the same things being rehashed ad infinitum, until some newby gets frustrated and demands to know why Oprah hasn't done anything yet to help dramatize the plight of the still suffering cfids, fybro, etc...

    I suppose the phrase good doctor could be used during a eulogy......providing it was the Dr.s eulogy.

    Take what you want leave the rest.

  20. naturebaby

    naturebaby New Member

    ...and I guess my philosophy is that we get what we give. I still love this board and find tremendous support and love here. I have been here awhile now too, and I try to help the new folks as much as I can. I often go back a page or two to reply or bump up posts which haven't been answered.

    It's true that many topics come up again and again. That's when I reach my hand out in friendship and help the next person along, because that's what folks did here for me.

    I agree with "take what you like and leave the rest" too. Wishing us all well,