New Here

Discussion in 'Fibromyalgia Main Forum' started by Sheryl, Sep 20, 2002.

  1. Sheryl

    Sheryl New Member

    Hi,
    I am new here, but not to FMS. Diagnosed in 1991. I tried to join other lists but have not been listed on any of them. Feel pretty alone at times. Last year I had back surgery for a seperate condition so have pain from that as well. I am having a hard time coping with family members comments and feel bad about always venting on my husband. Just need to here that someone else understands. Anyone else have family members who have FMS but seem to be able to do everything and live full active lives? Any ideas on how to handle the comparisons? Thanks for listening!
    Sheryl
  2. Sheryl

    Sheryl New Member

    Hi,
    I am new here, but not to FMS. Diagnosed in 1991. I tried to join other lists but have not been listed on any of them. Feel pretty alone at times. Last year I had back surgery for a seperate condition so have pain from that as well. I am having a hard time coping with family members comments and feel bad about always venting on my husband. Just need to here that someone else understands. Anyone else have family members who have FMS but seem to be able to do everything and live full active lives? Any ideas on how to handle the comparisons? Thanks for listening!
    Sheryl
  3. EllenComstock

    EllenComstock New Member

    Hi, Sheryl:

    Welcome to the messageboard. I am fairly new here, too. I was diagnosed with endometriosis a little over two years ago and just diagnosed with fibro this summer, but am sure I have had it for many years.

    Yes, I can understand you feeling alone at times. Most of the people we come in contact with do not know anything about fibromyalgia. It's a strange disease and hard for people to understand. I find that often it's easier to say nothing. When people can't see something like pain, they sometimes have a hard time understanding how really bad we feel at times. I rarely have a time when I don't feel pain and/or stiffness. Sometimes people you are the closest to have the hardest time understanding (like husbands). Mine just couldn't grasp the concept for a long time that there is no cure for this and that some people do become totally disabled. He is now coming around. I keep giving him reading material to help in his understanding.

    I keep reading myself to learn all I can and am trying to lead as normal and active a life as possible. I was never a couch potato so this is especially hard for me to accept that I can't do everything I could before. I am still working full-time even though it is really hard some days. I do the stretching exercises that my doctor (a fibro specialist) recommends plus I work out four to five times a week. Usually I work out on exercise equipment in my basement (nordic track, treadmill, stair climber, etc). On days when it's really hard for me to exercise I try to just walk around my neighborhood. I am determined to keep going because the alternative of being disabled is really scary to me.

    Anyway, I am glad you found this messageboard. It really helps me to be able to talk to people who are in the same siutation. I am also a member of the Endometriosis Association and have made a couple of friends there. I have to say that that's one of the good things that has come out of this situation is that I have met some really nice people. The one person I met lives in Texas and we plan to meet sometime (hopefully) next year. Sometimes good things can come out of bad situations.

    Well, I won't keep rambling on, but just know there are people you can talk to when you need to.

    Ellen

  4. ladydi

    ladydi New Member


    WELCOME, AND GLAD YOU FOUND THIS MESSAGE BOARD.

    YOU HAVE FOUND THE RIGHT PLACE TO VENT. IT TAKES THE
    LOAD OFF OF HAVING TO DEAL WITH THE FAMILY.

    YOU HAVE'NT FILLED OUT YOUR BIO, (ONLY IF YOU WANT)
    BUT, WOULD LIKE TO KNOW MORE ABOUT YOU.

    I TOO, HAVE HAD FM FOR MANY YEARS. I'M 40.

    I THINK MY 16 YR OLD DAUGHTER HAS SIGNS OF FM. LORD I HOPE
    SHE DOES'NT HAVE TO LIVE THIS MISERY.
    KEEP IN TOUCH, KEEP YOURSELF INFORMED, RESPOND OFTEN.
    LADYDI
  5. garyandkim

    garyandkim New Member

    We have one son with it and we have FMS and CFS. Hope our other 4 sons never devlope it but show some symtoms. My Mom gets her hair done every week and goes another place a nail salon once a week. She has run in to a lady with FMS who seems to be better then us so asks why are we not like her. Then another that has Polymyalga and thinks because it has the same ending it is the same. Of, course she is getting better and I should go to her doctor. Yep, it may not be relations with it but, sicnce it's some one she sees at these places why are we not like them. But, life has a funny way to put things in perpsectove. My 79 year old dad is going to have a heart conversion done and the Coumadin and the upper chambers not following the rhytum. well he gets dizzy and very tired and feels not to good some times. This is there personnal first biggie. Now a bit more understanding and now my Dad is even more understanding. I feel badly that it took something like this to get my Mom to understand what some of the symtoms are like even though she is only living with someone having these type symtoms.

    Backs Gary really knows where you are he has cervical fussion and what I call rooter rooting. Needs more and L5-S1 and it's all degenerating. I have moderate Facet degeneraton.

    You will find support here and the lib and Home page are great. Also the top topic post for A Paitents guide to CFS & FM. for free they will send up to 99 at one time. We are handing them out at doctors and chiros etc. places when we go even my sons pre school. I do print outs to to leave. The guide is great it gives a snipit of what we have and very well done. It also gives other sites. It's a great start to be given to family and friends,etc.

    Good luck to you and Welcome, Kim and Gary
  6. Sheryl

    Sheryl New Member

    Thanks for replying. I had my spinal fusion at L5-S1. They took the bone graft from my pelvic and put in 2 titanium rods with screws. They also found a cyst growing inbetween the fractured vertebrae which severed the nerve. What a setback for the FMS with all the bedrest and less moving around. No one seems to understand that the FMS is a separate condition and that surgery didn't cure everything! Except my husband of course who has been wonderful.
    I think family members understood better before my sister-in-law nad her daughter (my niece) were diagnosed with FMS. They live a very full life and do everything I can't do. I have started sounding like an FMS teacher a family get tohethers trying to defend myself. Thanks for sharing some of your story.
    Hugs, Sheryl
  7. Cindi

    Cindi New Member

    I'm new here too! I've been doing more reading than posting, though. Hopefully I'll start feeling well enough to post more!

    I also have other conditions besides FMS. It's so easy to feel "alone!" Since I've been reading here, I feel less alone because so many others are where we are, and really understand. I've been married for 23 years, and my hubby has been wonderful, but I can see that it's been harder for him lately, since my symptoms are worse.
    I don't have family members with FMS, but I do have family members who have friends or co-workers who have this or other chronic illnesses. They are the ones who ALWAYS have the happy ending, miracle cure, etc.!!! Well guess what, I'm NOT them!
    We definately don't need any extra stress, so I think it's sometimes important to distance ourselves from the family members or any other people who want to make comparisons!
    I've learned that this is so important for my health, hard as it may be.

    Hang in there, Sheryl. Keep coming here so you know that you are not alone, okay??

    Hugs & Prayers,
    Cindi
  8. eeyore

    eeyore New Member

    I NEW HERE ABOUT A MONTH, IT REALLY HAS HELPED ME READING THE POST THAT SOUND SO MUCH LIKE MY OWN STORY . UNFORTUNATELY I HAVE HAD PEOPLE SAY SAME THINGS TO ME THAT I CAN'T EVEN BELIEVE YOU WOULD SAY THAT TO A FRIEND. I'VE HEARD "WELL AT LEAST MY ILLNESS ISN'T ALL IN MY HEAD." AND THESE PEOPLE THINK THEY ARE FUNNY GUESS WHAT I'M NOT LAUGHING. MY HUSBANDS SAYS TO ME "I SEE YOU OUTSIDE TALKING TO PEOPLE SO I THOUGHT YOU WERE FINE TODAY" LITTLE DOES HE KNOW I NEED TO TALK TO PEOPLE SO I DON'T SIT AROUND AND GO CRAZY BECAUSE I FEEL SO LOUSY ALL THE TIME.
    THE OTHER THING I JUST LOVE IS THE PEOPLE WHO SAY "BUT YOU LOOK SO GOOD HOW CAN YOU FEEL THAT BAD" WELL GUESS WHAT I DO. SORRY FOR GOING ON BUT I KNOW HOW YOU FEEL AND I THINK IT HELPS US TO KNOW WE ARE NOT ALONE.
    TAKE CARE AND KEEP READING THE POSTS
  9. eeyore

    eeyore New Member

    I NEW HERE ABOUT A MONTH, IT REALLY HAS HELPED ME READING THE POST THAT SOUND SO MUCH LIKE MY OWN STORY . UNFORTUNATELY I HAVE HAD PEOPLE SAY SAME THINGS TO ME THAT I CAN'T EVEN BELIEVE YOU WOULD SAY THAT TO A FRIEND. I'VE HEARD "WELL AT LEAST MY ILLNESS ISN'T ALL IN MY HEAD." AND THESE PEOPLE THINK THEY ARE FUNNY GUESS WHAT I'M NOT LAUGHING. MY HUSBANDS SAYS TO ME "I SEE YOU OUTSIDE TALKING TO PEOPLE SO I THOUGHT YOU WERE FINE TODAY" LITTLE DOES HE KNOW I NEED TO TALK TO PEOPLE SO I DON'T SIT AROUND AND GO CRAZY BECAUSE I FEEL SO LOUSY ALL THE TIME.
    THE OTHER THING I JUST LOVE IS THE PEOPLE WHO SAY "BUT YOU LOOK SO GOOD HOW CAN YOU FEEL THAT BAD" WELL GUESS WHAT I DO. SORRY FOR GOING ON BUT I KNOW HOW YOU FEEL AND I THINK IT HELPS US TO KNOW WE ARE NOT ALONE.
    TAKE CARE AND KEEP READING THE POSTS
  10. Sunshyne1027

    Sunshyne1027 New Member

    I dont know many others with Fibro, offline, here in my life. I havent really searched though, for any support groups. I am not sure if there are many out there.

    I havent either had the comparisons of like one person may lead full lives, yet another isnt doing so well with it.

    I wouldnt worry about it. I would concern yourself with you, and deal with you. You are what counts. You keep on finding answers, dealing with it the way you can deal with it best. Glad to see you join in, cant wait to hear more from you.

    Its weird though, had some company earlier. A person from a local church, helping me out with a budget. She told me she has Fibro also. And then did some comparisons. Or really like we gave each other some info.. Like what meds she is on. She is taking vioxx, I am taking celebrex, what works for her, what works for me.. We are all so different, yet share the same thing.. the DD.

    Peace~Sunshyne
  11. deecrossett

    deecrossett New Member

    I'd like to add my good wishes and welcome. You have found a wonderful group of people who are more than glad to help in many ways. I'm looking forward to getting to know you.
    God bless, Deena
  12. PMangels

    PMangels New Member

    You came to the right place. This board is full of information. You can ask any question and someone will be able to share with you. Their are a lot of loving and caring persons on here and I am glad to be here. Sorry you have to deal with insensitive people. It is hard for "normal" people to understand what we go through. I know it can hurt but you are fortunate to have a husband who tries to understand you. I'm lucky for that same reason. But now you will have us so just "vent" away. Glad you found us.

    Love and Hugs,
    Arlene
  13. teach6

    teach6 New Member

    I'm glad you found our board. As for others who don't understand, they don't have to be family members. It seems like almost everyone I meet knows someone who has been "cured."

    I am lucky in that I have several friends with FMS. They realize what I'm going through, even if it's not the same thing they are dealing with. I also have CFIDS and Neurally Mediated Hypotension which none of my local close friends has.

    There is a woman at my church who has CFIDS and FMS, but we're all so individual in the way these syndromes affect us, just like we react differently to meds, that simply knowing someone doesn't always mean even they understand. One of my close friends with FMS and now possible Sjogren's has said to me that I obviously have more problems with pain than she does. I appreciate that acknowledgement.

    Some of my best CFIDS/FMS friends are people I have met here on the board. We keep in touch on and off the board and are there for each other in good times and bad.

    I hope you will stay a while and make some new friends here too.

    Barbara
  14. dolsgirl

    dolsgirl New Member

    Hello & welcome all. This is a great board, alot of support and alot of laughs with each other.

    Someone mentioned in their note that you may like the lib, that's the Library. It's one of the folders up at the top to read some or all of the articles that you'd like, or print them out to read. It has a store, which I haven't used, but I want to try the ZMA. Someone wrote about it and I think just about anything is worth a try.

    This is also a good place to vent, especially if you have a supportive hubby. The spouses are usually doing the best they can. So let it out here.

    Welcome to you Sheryl and to any & all I may have missed. Some days are better than others. I'll be answering a post, as I am now, & know that I absolutely HAVE to get off the computer as soon as I finish that particular post. Then, I may miss people that I had planned to get to, or just missed them. Nothing ill intended. We just understand, that's how it is. You can only do so much.

    dolsgirl