I need your opinion

Discussion in 'Fibromyalgia Main Forum' started by EllenComstock, Mar 26, 2006.

  1. EllenComstock

    EllenComstock New Member

    Hi, Everyone:

    Some time ago I posted a message about a guest speaker that was coming to campus (I work at a college) during our Disability Awareness Week (DAW) we have every year. This speaker has several health problems, including FMS, although I was told beforehand that she was a FMS "survivor" which I questioned since there is no cure for FMS.

    I had planned to go, but her talk was in the evening and I wasn't up to going, unfortunately. Last Friday I was invited to the DAW luncheon and sat next to a co-worker that I don't see often since she works in another building.

    She knows I have FMS and told me she went to hear the speaker on FMS. The speaker said that she lost weight and changed her diet and that she no longer suffers from FMS. Said she was able to go off her pain meds.

    I know that there are some people here who have improved through diet and other ways and are not on any pain meds, but I feel that because of this speaker, that my co-worker, and probably others who attended, have a misconception of FMS now.

    I did tell Kathy (my co-worker) that everyone with FMS is different, but unfortunately, we didn't get another chance to talk as there was a program during the lunch. I've been thinking about this over the weekend. Should I e-mail her and briefly explain FMS to her? (FMS is so complex-it's hard to do this briefly). Kathy helps with DAW every year and I know in her job that she does have contact with lots of students, including those with chronic illnesses.

    Or should I just let this go? It just really bothers me that this speaker has given out some misinformation or at least perhaps not given the whole picture of FMS. It's frustrating to have a person who could help us, but it sounds like she may be hurting our cause.

    If nothing else, it has helped me to vent here.

    Ellen
  2. Sheila1366

    Sheila1366 New Member

    I would love to jump in there and help you straightne out this so-called speaker nthat is a fm survivor.

    I know that sounds harsh but that just makes me so mad.

    If it is true that this speaker is "Healed" then yippey for her.

    I know that last year I was dieting,exercising and losing weight when fm hit me and dropped me to my knees.

    I have lost a bunch of weight and changed my diet somewhat.And yet I am in constant pain.

    Ellen I am sorry you had to sit there and hear your friend talk about this.It does give people like her the wrong idea and does make it hard for us that suffer with fm everyday.Especially when the weight issue is brought into to the conversation.

    I wish people would stop harping on how we all need to lose weight.

    I was overweight for 12 years, obesse.

    Now that I am down a few pounds I am not given the mean looks and almost treated like a "normal person".

    Weight is an important thing to try and control but to blame our weight on the fact we have fm is absurd.I hate the way people are treated that are not the perfect size 8.It's not like we don't have enough stress to deal with.

    Give me that speakers email, I need to share a few things with her.I'll take a klonpin first so I won't get arrested for threats.LOL!

    Sheila
  3. Mikie

    Mikie Moderator

    Is it possible that you could represent the face of FMS next year at the program. You could explain that everyone with FMS is different. About 1/4 of us are bedridden, 1/4 can continue to work, and half of us are somewhere in between. If they could arrange transportation for you and try to have you speak during the day, it would help. Just a thought, but I believe they need to hear a more realistic FMS experience than that of a "survivor."

    I think I told you about the woman who was paraded out at a FMS event at our local hospital. She was all perky and bouncy and worked full time. It was an insult to all who were in pain and using walkers and canes in the audience. I think this kind of presentation does us all a disservice.

    Love, Mikie
  4. mahx

    mahx New Member

    Ellen I am sorry the people around you were infected with this misconception. I agree with mikie if she has found relief...yippee for her. I have found that I wasted alot of time and energy ( that I really couldn't spare anyway) on trying to make others understand. While it is helpful that those closest to us understand, the most important thing is that YOU understand.
    Just like the "normals" ..its not healthy to compare ourselves to others , unless we are comparing meds, info, etc. Keep trying things until you hopefully find something or combo of things that work for you.
    What has helped me..cutting back on caffeine, increases water intake, healthier diet, and trying to maintain good sleep.....simple huh.
    But, that was me.....then there are the times I think, hmmm i may just have gotten some controlover this dd----and then that invisible fibro truck hits me and I am in bed for days.
    Speaking at the next conference was also a good idea...give people another side to this story.
    Good luck to you, sorry for the long post.

    Ma
    [This Message was Edited on 03/27/2006]
  5. pemaw54

    pemaw54 New Member

    Even here where we are all so supportive, I read about some who can work and seem to have a pretty good life going.

    Let me throw something out. I posted this a few weeks ago. At my last PC visit, he tested my VitD level and said it is extremely low. He said he had just went to a seminor where he was told that many people who have been diagnosed with FMS are really vitD low. He prescribed 5,ooounits a wk. I have not seen any difference.

    Maybe thats what happened to this speaker. When she changed her diet, it had alot of vit.D or something. Maybe she never really had FMS, who knows? I like the idea of you being the speaker. Most of us could give some good lectures on the misery of our lives now.

    Suzette
  6. Hope4Sofia

    Hope4Sofia New Member

    I don't know what your relationship is with your co-worker. If she is more of an aquaintance then I would probably let it go.

    It is frusterating because something happened which discredits what you suffer from. It isn't fair. But, at least for today, you won't be able to go back and change everyone's perception. You may be able to in the future but right now, you might just come across as defensive.

    All you can do is live the best life YOU can live and let others come to their own understandings. This woman may not have really had FMS or maybe she's in remission, who knows. The fact is these stories are always out there. We have to find a way to be at peace with that and be misunderstood by some.

    I hope you can hear the tone of what I'm saying. I don't want to come across the wrong way. I deeply empathize with your discouragement over this issue. We have all been trivialized with these dds at one point or another. YOUR health is what is at stake and for you I would say let it go and keep focosing on living well.

    (((HUGS)))

    Sofi
  7. EllenComstock

    EllenComstock New Member

    I guess I am feeling discouraged as last year I worked so hard with the DAW program and gave them the name of a FMS speaker who did come in March 2005. They had me introduce her which is not something that comes natural for me (getting up in front of a crowd). I did a lot of work advertising the speaker on radio, TV, my support group, passed out flyers, etc.

    The speaker did a wonderful job of explaining FMS and I felt like all my efforts were worth it (even though I had a major flare after all of this extra activity). Now I feel that we have gone several steps backward. But I know that there were people in the audience with this year's speaker who are more knowledgeable about FMS and people who came last year who didn't come this year to hear this speaker speak. And there were people with FMS or knew someone with FMS who came up to me after last year's program and thanked me for having this women come and speak. So I have to remind myself that this makes all the work last year worthwhile.

    I don't feel I can say too much about this year's fiasco with this other speaker since this has all taken place where I work.

    The co-worker I sat with at the luncheon last week is someone I have always been friendly with, but we are not that close. Our jobs don't really cross paths very often so I rarely see or speak to her. I guess it is better to just let it pass and not say anything further. But it is so frustrating and maddening.

    One person who responded here said that we should all contact this speaker directly. I don't know her address, but it is tempting. I am thinking, too, that she may be in remission or maybe doesn't even have FMS at all. I know that other health problems like thyroid, lyme disease, and vitamin D deficiency can all cause similiar symptoms.

    Thanks for giving me someone to vent to.

    Ellen
  8. NyroFan

    NyroFan New Member

    Ellen:
    I would bombard her with horror stories about FMS by e-mail.
    It would certainly balance out the miracle cure.
    N.F.
  9. Cromwell

    Cromwell New Member

    You can tell her that some here are actually underweight. The weight issue I believe comes a lot of the time following the illness and is often caused by meds and also by not being able to exercise much. I also know that some people get altered metabolism. I think mainly the meds.

    It reminds me of some research once-this is not a joke-where they concluded that thin people seemed to live longer. This made me consider why all the jolly older people I saw seemed a little heavy? And all the ill people who were old looked thin. Conclusion a lot of people are thin when they die because they got sick and lost weight prior to dying.


    Darrel Huff "How to Lie with Statistics" used to be a favorite book of mine.

    Go for it tell them both.

    Love Anne C
  10. EllenComstock

    EllenComstock New Member

    While something like this is upsetting, I have calmed down since yesterday. Of course we can't make the whole world understand FMS and related illnesses (although it would be wonderful). The important thing is that we know this illness is legitimate and hopefully we have a some sort of support. I know there are some here that have no support other than this message board. I am thankful that I have several people outside this board who have been supportive.

    Thanks, again, for letting me vent.

    Ellen
  11. kjfms

    kjfms Member

    ...I think you should email the speaker. Maybe she needs a little reminder that all who suffer from FMS do so differently and that she should include that fact in her speeches.

    As for the coworker if she is a friend yes email and explain, if not I would just let it go. If it comes up again maybe you could go in to it further.

    Thanks,

    Karen