This board is getting me down!

Discussion in 'Fibromyalgia Main Forum' started by hensue, Jun 14, 2009.

  1. hensue

    hensue New Member

    Every time I look on it something different so in depth I do not understand it. I quit going to a support group they were such downers.

    Maybe it is me I am the downer today.

    I am looking for a cure on here and it is not there!
  2. frickly

    frickly New Member

    Sorry you are feeling discouraged. This is a very complicated disease and I won't pretend to understand all that is said on this board. But I have done tons of research in this area and do think we will find a cause.

    Take care,
  3. Bluebottle

    Bluebottle New Member

    Of course there is no cure on here. If there were we would not be here, we'd be getting on with our lives. There is as yet no cure.

    Our only hope of one is to donate what we can, however little, to biomedical research.
  4. Khalyal

    Khalyal New Member

    That's because the politics of the CDC et al have stood in the way of research. That's why activism is so important. That's why following independent research is also so important.

    You always have the option of not reading, though!

  5. munch1958

    munch1958 Member

    That's a popular 12 step slogan that applies to lots of stuff that I've read here. Take what you like (or need) and leave the rest behind.

    Many people on boards like this can be so negative. I think they get their jollies by attacking others. So I don't come here too much anymore. Some days there is just too much drama for my poor shot adrenals to hjandle so I don't get "involved" in any of it.

    It doesn't help matters that many doctors don't believe these fatigue based conditions exist. Not only do we have to overcome their antiquated ideas but we must deal with an illness that most doctors are not willing to try to understand or to treat. There are many treatments that can be tried to alleviate symptoms but most of the time they just tell you to "learn to live with it".
  6. quanked

    quanked Member

    to gain more information, to share my thoughts and limited information, to find support and to know that I am not alone.

    I avoid reading certain kinds of posts and certain posters. I have a high tolerance for crap unfortunately, so sometimes, reading the posters who are at each other do not bother me much. Everyone is entitled to their own views. Live and let live.

    I have needs met here that cannot be met elsewhere. I hope that someday a cure is posted here but I doubt this will happen. But if I can find any info that leads me to something that can improve my functioning then I want it. I cannot imagine not coming here regularly. I generally feel uplifted after checking in on this board.

    But as some suggested you might want to not come here anymore. Why allow yourself to be brought down? If this board does not help you then you are wasting your time here. Find an activity that builds you up.
  7. jmq

    jmq New Member

    I just logged on and saw this. I am so sorry you are having a fustrating day here. I know...I wish there were clear cut answers and there are none! Its like a giant puzzle and the pieces are constantly changing. I barely keep up with it all.

    I just wanted to remind you that we all care about you and are going through the same darn issues. I mainly come here for emotional support. If there is anything I can say or do to help you, I would.

    Gentle Hugs....
  8. wacquiebob

    wacquiebob New Member

    I hope people continue to feel free to post not only " happy" things or research information, but also their problems with the disease. All of people's experiences with the disease, good and bad, help others know that they are not alone trying to cope. It also gives others who have found a way to cope with the "not so good" an opportunity to share their knowledge with others. All of that helps, I think. A lot of sufferers have to hide enough of what they are going through in real life; they don't want to have to hide it from a support group also. I know I want to be able to be real and feel validated somewhere in this life, even if it is only the internet.
    This disease is a tough one to deal with and I am sorry you are feeling down. I am always amazed how many posters, no matter how bad they are feeling, manage to find something positive to say at the end of their posts. I don't know how they manage to see a ray of light but I appreciate their efforts.
  9. Mikie

    Mikie Moderator

    Just sending you some warm thoughts and gentle hugs.

    I don't read the negative posts and I don't attend a support group. I try to stay positive. In a group, I was stuck listening to people venting all the time. I understand the need to vent but I don't think it's healthy to be brought down by others' venting.

    Here, I can control what I expose myself to. There is a lot of good info here but some of it can be very complex and difficult to understand, especially when our brains are so tired.

    Sending up a little prayer for you.

    Love, Mikie
  10. shari1677

    shari1677 New Member

    Hensue - I also cannot understand anything in depth anymore. I went to the osler site and didnt understand it.

    Maybe I need to go back and start with Dr. Seuss again?

  11. ourlife

    ourlife New Member

    I agree some of the things on here are hard to understand but honestly...if it weren't for this board i would go crazy. I was diagnosed in Oct and have been on this board since. the people on here have helped me so much. If i have a symptom i go here first to see what home remedy they have tried instead of going back to the Dr.

    also some on here have families that dont understand and dont want to hear the they do it on here. Its like a circle of friends.

    this is a negative disease but people use it for their personal needs. You just have to choose what that need it. I need this board..i look on it everyday to see what new things people are experiencing..what meds i need to talk to my dr. about and sometimes i vent and complain too.

  12. Mikie

    Mikie Moderator

    I'm sorry that woman was so thoughtless, especially after you went to all that trouble. Someone else with our illnesses ought to realize just how little energy we have and what a gift it is when someone is willing to share.

    We find that here occasionally when someone asks for help, many of our members replay, and the originator of the message never acknowledges he or she read the responses. That is why I've asked people to be sure to respond to those who left messages of help. With how tired our brains are, and how poor our memories can be, it is possible that people just forget. It's hard to see, though, how someone would miss your e-mail to her.

    What I found at the local support group was poor moderation keeping the members on track and not allowing one person to go on and on and on. One woman's husband was divorcing her and she was obsessed and took up the entire time crying and asking, "Why?" I felt very sorry for her but she obviously needed some private therapy. Everyone tried to be supportive but it wasn't helpful for her nor for the rest of us.

    What happens so often here is that older members, like me, have seen the same posts and questions over and over. I have answered thousands of them by now. I have tried to give back because I have received so much here. If I think I have some experience or special knowledge, I will still answer select posts but I think it is time for a whole new generation here to get involved with the types of things which come up often. When we have been sick a long time and have achieved some level of healing, we do move on to a different place. We want to keep moving ahead and not get dragged down in the natural negativity which comes with the territory when we first get sick. I hope this does not offend anyone. I pray for everyone here every day because I know just how difficult it is to accept our illnesses. It's just that my life now requires that I spend my energy trying to keep working part time and get enough rest to carry me through. This has been an especially trying year with several bouts of various infections and horrible allergies. I guess that right now, I have to put me first.

    I do wish everyone well here and hope everyone can achieve healing, peace, and love. I always respond to anyone who calls me out on a post if I see it.

    Love, Mikie
  13. simpsons

    simpsons Member

    i wonder if you would find it easier to post your questions and let the people on the board help you find some answers

    there is not a cure as yet but there are ways to improve your health

    the research is moving at a fast pace now with the release of a dx test in europe and amazing research at the whittlemore peterson institute and we are all fighting and working hard to support advocacy movement by writing to our politicians and the cdc or whoever in our countries are the decision makers to get further money secured and policies secured to work towards a cure.

    don.t worry we all get problems learning stuff and brain fog rules in our community so just take one thing at a time. you will find plenty of help here and understanding

    peace love and goodwill
  14. Hawkeye

    Hawkeye New Member

    I think that no matter what the topic of what I read on this board it is a Godsend that there are other people who know the road we hoe. A lot of people are not happy that others in their lives appreciate or understand their disease and their limitations. I for one do not speak of my disease to anyone in my life unless they bring it up for a number of personal reasons so it is such a relief to come here with all you good people and feel that I belong to a really great group where everyone understands. For me it is comforting but I agree with others that it really does depend on what you are coming to the board to find.

  15. lakotasu

    lakotasu New Member

    I can see how frustrated and angry you are. I totally understand. I have been there too, but I must tell you, if no one else has...there is no cure for Fibromyalgia! (FM) There IS *management* and acceptance and learning how to best live your life with this condition, but there is no cure. Those who make their peace with this are the ones who function best. I've been where you are right now. I was diagnosed in 1990. I am an RN. I decided I would take a totally proactive role in my treatment and find out everything I could. I went to seminars, I took courses, I did self-study. Today, I work with Pain Management and will soon take the exam to become a Certified Pain Management Nurse. But in the beginning, I went to several doctors and the last one was a supposed "expert" in FM who, though well-intentioned, nearly ruined my life. He had me so deep in a chemical swamp I could not function and was totally unaware of how drugged I really was. The final "kicker" came when he prescribed pharmaceutically prepared dextromethorphan for the pain. This is the same preparation that one used to find in cough syrup. (Think Robitussin-DM..the DM is the dextromethorphan) It is a relative of the drug ketamine, which is an anesthetic drug that causes dissociation of mind and body and can cause major hallucinations. After being on that drug for a couple of days, the next thing I knew, I was in the back of an ambulance in a parking lot at a large store at 3 A.M. and my then-husband had been called to come get me. (The problems with the medications contributed to the breakdown of my marriage.) I had driven there totally whacked out of my mind and wandered around the store talking to people. It was only out of the goodness of the store clerks that they called an ambulance instead of the police. I was so humiliated!! I quit taking anything but ibuprophen & tylenol. After a couple of weeks I started to actually *think* again!!! I wasn't sleeping very well, but my brain started to work again!! Then I started a *light* exercise program. This is very important. One must start exercising, but it must be gentle and start out slow with low-impact type such as walking or swimming. If you have access to a pool such as a community center swimming is THE best thing you can do for your body even if it's just to get in the water and walk around and dog-paddle.

    Anyway, I had spent years beating my head against the wall trying to beat FM. There is no beating it! People with chronic pain go through the same stages as those of grieving. Denial, Anger, Bargaining, Depression and Acceptance. "We want a CURE!! We're really angry because no one can seem to do anything about the damn pain!! A lot of people think we're crazy! Why me???" Those are Denial and Anger areas. Then there's, "If I just do (fill in the blank) I'll get better! If I try *that*, it will all go away! This new pill will be the magic bullet to cure FM!" These are Bargaining statements. Then we come to Depression: "I don't want to live like this..I can't! How can I go on in such pain? There's no way out...I'm trapped in this forever. I feel so bad all the time. I feel so sad all the time." People travel back and forth between all these stages on their journey toward the final and most healthy stage...Acceptance. It is only by Acceptance that one can finally be free to get back to living one's life. do hurt. always will. one has a cure or a magic potion or a pill or anything to make it go away. It is NOT easy. And there is no rhyme or reason in why you have it...nor is there any "punishment" involved. It's just a fact of life, pure and simple. So, you have a choice. You can continue to beat your head against that wall of the first four steps, or you can make a conscious decision to ignore the wall, go around it and seek acceptance on the other the peace on the other side. I'm not saying it's easy. It's a conscious decision and it takes work. Support groups can help. But the first step is giving up the idea that there is a cure for FM, giving up the anger and dissappointment over your situation and then going forward toward making your life the best it can be.

    I wish you peace on your journey!
  16. hi there all,

    i just wanted to say that,i too used to feel very down,that this board didnt contain the cure.

    then i realised that,at present,there isnt a cure, and this board is our saviour as regards helping us to cope with a difficult illness.we arent alone here.

    i went for my first breast cancer scan,yesterday.ill get the results in 14 days so im told.

    the scan didnt hurt my breasts, and i was so very relieved about that,usually my body aches all over with the fibro.

    anyway i told the nurse that i suffer from fibromyalgia,and as the scan wasnt hurting my breasts (i have small breasts),it would seem that im not in a fibro flare am feeling happy today.

    her question to me was....

    ive just scanned another lady and she has fibro too,do you find that the fibro is related to weather conditions, because the other lady says the weather triggers off her fibro?

    i told her ...yes its weather related and ill get a migraine headache one hour before a thunder storm arrives in my town,how strange is that?then the migraine will leave me when the storm has gone away.

    i said i wonder if its a vein and pressure related illness.the lady said yes i believe it could be.

    so now i know that i cant do a thing about my fibro,but i hope that the medical people can help us one day.

    yes its important to keep mobile,as it helps with the cirulation,but fibro/weather conditions, rule us,and im not going to worry and give myself a raised blood pressure over this just isnt worth it.

    please know that we all feel angry at times with this illness,weve been waiting for a cure or break from the pain for far too many years now.

    all i can say is,you arent alone and this site helps us to sort of cope.

    love fran