newbie that can use a

Discussion in 'Fibromyalgia Main Forum' started by ckahele, Jul 18, 2003.

  1. ckahele

    ckahele New Member

    normally i'm one of those "cockeyed, glass half full" optimistic people. but this has really knocked me off my feet. my mom was recently diagnosed with fm and upon reading about her condition I SAW MYSELF-SINCE I WAS A CHILD. now i have an appointment w/the rhuematolo...(spelling?) for myself.
    as i said, i can see certain symptoms i've had since childhood but they have now joined with others and are having a loud and obnoxious party in my body!!

    on the one hand it is a relief to know that all the suffering is not in my head but...i know the road ahead will be full of bumps and potholes and detours. being an optomist-i tell myself " at least you have a decent map now, but it still is tough to realize that instead of cruising down the highway of life in a thunderbird convertable i will instead be hitching up two mules to a rickety wagon. oh well, at least the wagon has wheels (once again-the optomist in me).

    i'm so glad you all are here, it will make the traveling so much easier knowing that there are friends to meet along the way-to laugh and cry with.

    but the thing that has me really down is that i am starting to see some of the same symptoms in my 16 yr old daughter. the over-protective mother in me is going thru alot of guilt and anxiety knowing that my baby might have this dd as well AND THAT SHE RECEIVED IT FROM ME !! i know it sounds stupid but the thought is really making me want to cry.

    you folks have been so wonderful--i've been reading this message board for awhile before i got up the nerve to talk myself. thank god for y'all.

    p.s. i truly believe that fm may be in our systems since birth but traumatic physical/emotional stress makes it rear it's ugly head. i came from a physically abusive marriage, since my divorce i've received no child support in 11 years (the optomist in me says "well, you don't have his money but then you don't have his bullsh*t either"). raising two kids on my own has been tough, but my dad having a stroke and then losing my 17 yr old nephew in a drowning accident was definitely the straw that turned my camel into a fire-breathing dragon.
  2. Mrs. B

    Mrs. B New Member

    I'm sorry to hear that you have been having a tough time but, from what I've read you are still an optimist and have a WONDERFUL way with words. :)
    You don't have to consider that you are cruising through life on two mules only that your thunderbird overheats and needs some extra water and attention. If you are diagnosed with this dd I hope you find a good doctor right away. If not keep looking until you do. With proper diet, excersise and meds if necessary you can control it instead of it controlling you.
    As for you daughter, I read on here that some think this dd is reversable in children but, I dont'know of what age. However, she is young enough to take control of it now and hopefully keep it from getting worse.
    I am sending you big, soft {{{{{{hugs}}}}}} and keeping you in my prayers.

    God bless,
  3. Dara

    Dara New Member

    So glad you decided to post your message. I certainly agree with you and understand your worries and concerns. Like you, my Mom also had FM, I think I've had it since childhood and now my daughter has it also. It used to be that it would come and go, but I was always able to work through the pain and fatigue. Now, that I've gotten older, almost 57, I've had to finally give in and stop working. Now I spend my days just trying to take better care of myself.

    When I got my official diagnosis I also felt that I was finally validated. Before that I was wondering if I was a hypochondriac or if it was all in my head. It's almost a relief to finally have a name for it. I hope your appointment goes well at the Rheumatologist and that he can give you some good advice.

    This is a great message board. Lots of people with lots of answers and suggestions when you have a problem or question.

  4. Mikie

    Mikie Moderator

    Welcome. The glass is more than half full. You found us and this will be a HUGE help to you in dealing with your illness(es). This website is a font of knowledge, wisdom, and caring. We have a library with more than 3,000 articles which will help you learn more too.

    The other good news is that you are seeking medical attention. This is the hardest part of treatment, going through all the testing to eliminate other illnesses which can mimic ours. The other good news is that your daughter is so young that treatment may well be very effective in her case. What you learn, you can use to help her.

    If this doc you are seeing isn't good, keep looking until you find one you like and who is knowledgeable obout our illnesses. There are some docs who specialize in pediatric immune disorders and you may be able to find one for you daughter.

    My Mother, and probably my Grandmother, had FMS, I have FMS & CFIDS, and both my dauthers have FMS, one with vulvadynia and interstitial cystitis. These illnesses are most likely genetic in nature and do run in families.

    Good luck to you and let us know how the appt. goes. Keeping a positive attitude and reducing stress are two of the most important things you can do.

    Love, Mikie
  5. Chelz

    Chelz New Member

    Hi and welcome. Consider yourself hugged from this board and me. Before you go to your doctors appointment, research as much as you can about Fibro, the more informed you are, the better. As far as your daugher is concerned, please don't feel guilty, it wastes so much time. If she does have fibro, get her the help now at her young age, to possibly avoid more problems down the road. I do feel most people who have a chronic conditon get worse because of the disbelief and criticism they have received for soooooooo many years before being diagnosed. Godd luck to you. Hugs, Chelz.
  6. cindye

    cindye New Member

    If you read Dr. St. Amand's book, you will see where there are signs that go back to infancy - my daughter has fibro and when I was reading that book, I cried. It even went as far back as colic when they were babies and there were so many things mentioned that I thought "if I had only known". When she was 7-8 she would complain about her legs and arms hurting and it was chalked up as growing pains. As I read the book, I kept saying "I could have written this paragraph". She was 15 when she was diagnosed and she was 18 when I read this book and now 1-1/2 years later, she is going off to college - something we were not sure she would ever be able to do. I was afraid she would have to go locally so she could stay at home - thank goodness, even as bad as she felt, she NEVER gave up the dream of going away to college and becoming a Special Ed teacher. Guai, a good chiropractor and massage therepist changed her life arond. Good luck in your search!
  7. bitter-sweet

    bitter-sweet New Member

    Sorry you have to be going through all this, but you will find good support and information here. I just got done venting here earlier, and the responses made me feel so much better. My family is supportive, but when I talk to people that have FMS like I do I find even more understanding. There's always someone here with the right support or information. Gentle hugs to you and your mother.
  8. kerrymygirl

    kerrymygirl New Member

    Hi, you will find your story is not unusual. Families that have all the background. Many yrs. of misdiagnosis. Our guilt when we see our child suffer also. SInce I had joined I learned alot even though I have researched for yrs.

    Hope you can find a compassionate doc. Yes, stress makes any illness alot worse. I had a very diff. time with my x,to say the least 8yrs. of stalking. When I could have taken better care of myself and children.

    Hope you are able to get some answers and help to your questions. Remember we are all diff.,what works for 1 person may not work for you. We are in uncharted waters all just testing what helps ourselves or loved ones the best.

    Take Care and Hugggsss
  9. jadibeler

    jadibeler New Member

    Just want to add my story to the others who have answered. You sound just like me. My mother was originally diagnosed, in 1945, with MS She went on that diagnosis for many years. But she either didn't recognize symptoms in me or she was in denial.

    I was "sick" all through childhood, teenage years and highschool were a nightmare (especially gym class), and I was pretty much scorned by the real athletic girls, who all seemed to be in my class! I was tired all the time, couldn't excercise without pain, depressed all the time.

    I was in my early 30's before I was diagnosed (called "myofibrositis" back then). I don't know at what point my mother's diagnisis was changed to "fibromyalgia".

    I noticed my daughter having symptoms when she complained in highschool that her knees hurt so badly while playing hockey and softball. She was not in my custody - in a strict boarding school, in fact - and I didn't get to see much of her and had no input in her medical life. It was not until her mid-20's, and at my insistence, that she finally saw a doctor and was diagnosed. She has 4 sons and is now glad that she didn't have the girl she wanted so badly.

    There are a couple of young teenagers on this board who have been diagnosed. If only we all could have gotten help when we were so young.

    You can't feel guilty about something you didn't know about.

  10. Shirl

    Shirl New Member

    Hi, welcome to our world. Glad you decided to join us. Sorry to hear of all your problems .

    There seems to be two schools of thought on the inheritability of this illness. Some think yes, and some think no.

    I seem to have contacted FM after having pneumonia over thirty years ago, was diagnosed over twenty years ago with FM. Before this I was never sick, had no pains, stomach problems, headaches, foggy brain, sinus attacks, etc.

    In fact I did not even contact the normal childhood diseases, and my brother got them all.

    My parents or brother did not have FM either. All died young, but in no way had any of these symptoms. They all died of cancer.

    My three children are grown, and have no signs of this, nor do my two grandchildren.

    The only three relatives I know of suffered from pains that was this bad were my grandfather, and my two uncles (his sons), but they were dairymen and the work was hard and strenuous. Unless it skipped a generation?

    Since you are such an optimist, I sure hope that it holds true for you and that you and your daughter have something that there is a cure for, and not FM.

    I am more of a realist, I always look at the facts practially, which always seems to get me in trouble with optimist and pessimist. I fall somewhere out side the loop these days.

    Again, welcome to the board, and lots of luck with everything...........

    Shalom, Shirl