My life as I once knew it....

Discussion in 'Fibromyalgia Main Forum' started by Vicque, Dec 27, 2002.

  1. Vicque

    Vicque New Member

    Hi all....New to this forum, but love the website. I am a LPN who was dx with FM/MFS, GAD, after a roll MVA in 1994. I too like the rest of you suffer on a round the clock basis the horrid pain of the stupid disease. Don't think because I was in the medical field that we get any special treatment. Actually sometimes I think we are treated worse. Yes small town doctors don't have a clue about fibro, or how to treat it. The somatization crap is what is...crap. Everyday I wake up and pray that today is going to be a "better day". Maybe the noises, the lights, the muscle pains, the headaches, and on and on will just go away. I have even tried to pray it away. I believe strongly in God and healing, but I still know that despite the pain he's there. The chest pains are scary. The low blood pressure dropping is scary too. But fear is a endless cycle once it hits you. It affects my family as well. I feel sorry for my husband and kids. I have always been very active and love sports. Now....I just dream of the "good ole days". I have researched this dx to death. Looking for the right pill, the right herbal pill, the right excersise, the right diet, only to find NOTHING works. I still take vitamins, but I would eat grass if they said it would stop this. I too felt like I wouldn't make it through Christmas Day, even as happy as it was being with my husband and kids. How do you explain to them that you hurt from head to foot. I know they must get sick of hearing my this hurts bad today stories. Soon I am going to start on a book about my journey with this disease thus far. The doctors treating us like we're crazy drug seeking idiots. I am open to anyone's suggestions to what medications work for them. I have been very depressed lately too, mainly because I know that I have to give up my nursing career, at least for now. I couldn't make it through a shift anymore. I had heard at one point that fibro could get better over the years, yet mine seems to have worsened. I don't talk to anyone anymore about it because either they don't understand, or they think I'm crazy. Sometimes I do feel crazy. Found myself the other day trying to remember where I put stuff I had just laid down, and my mind went completely blank. God bless each of you. If I can answer any questions for you, I will. I am fixing to start my battle to receive SSI. It hurts my pride, but accepting the things I cannot change. I have 4 kids 16,15,7,5. Sometimes I feel like such a failure to them all. But I am a fighter. I'm hurting again...will quit for now.....Hope your tomorrow's find relief from your pain.....
  2. 1Writer

    1Writer New Member

    Hi, I'm CFS sufferer, but I can definetly relate to everything you have said. I used to have a career as a copywriter/graphic artist and now I stay home, and I'm AM currently writing my memoirs...but from further back than the CFS dx. I know you will find wonderful people here that will support you in your pain and your joys and much information for your journey for a cure. The wonderful thing about this site is the tremendous support the people here will give you and maybe you can give them...so, WELCOME and hope to hear that you feel better the next time you post.

    1Writer
  3. JaciBart

    JaciBart Member

    Hi, I am glad you found us, this is a great place, you will learn anything you need here, I have, only had this since May of this yr and I found this place soon after, it has been a godsend for me.

    I am not sure what you are taking but I recently started on neurontin and helps me with pain, energy and my emotional well being.

    Jaci
  4. fibolady

    fibolady New Member

    it seems we have both been through a lot, as everyone on this board, since about 1995 for me. with four children at home, wow, you must be getting a lot of good support from the home fires, that is so important. it is so frustrating to not "get well" after trying treatment after treatment. yes, it is also tiring in itself, just trying to feel better so you can make it through the day or week to get the things done you need to do for your family. this is a big stressor that moms understand.

    don't despair at your lowest day, remember that there is always a day out there that you will feel a little better. there was a very good article posted on the home page about acceptance instead of running around trying to get "cured" all the time. that was me in a nutshell. don't get me wrong, i still am working on different approaches, but most of my time now i spend finding ways to include myself (as it is today) in a daily rountine that is doable for me.

    sadly to say, my husband and family have not supported my illness (except a grown son) and i am now separated. your children are so young, my hope for you is that if your illness starts affecting your marriage that you seek counseling for you, your husband and children. i started counseling, but only myself went and it was too late at that point for the ex, he wouldn't go anyway. we had been married 23 years, so much for in sickness and in health. just had to throw that in for a little self pity this morning.

    my fms has not gotten better over the years, the flares seem to be a little worse, maybe it is age. i do "all" the right things to avoid a flare, yet they still come. my doctor believes there is a pattern, but darn if i can figure it out.
    stress is a big factor, in every disease, so we can all work on that one. just wanted to welcome you and will look forward to your journey with us on the board.

    warm regards, fibolady
  5. JP

    JP New Member

    I am 5 months new to this board as well...great place! Welcome, welcome! I like your idea about writing a book. It seems like it would be a very good outlet for the enormity of this experience. I do not share this stuff much either. I have become fairly isolated as a result. It is much safer and less stressful in my world of isolation. It seems that you do not have that choice with such a large family, and you are not a failure as a Mother! All we can do is our best and that is a great model for your children to witness. I have a very interesting and quite diverse lengthy medical background...I guess I could put it in my bio. The story is much too long to share. I agree with you that you are probably treated worse as a medical professional with this unacceptable invisible condition. You also know what they all say about such conditions and we know that most docs don't have the time to delve into the depths of this condition. They would rather pass it off to someone who has an interest or speciality. I have both the invisible and visible conditions going on. I get help for those conditions that are considered WORTHY of medical attention and I just do not go into the FM stuff at all. I see a specialist for the arthritis and FM and deal with it there to some degree. The good news is that the meds I take for the visible conditions are for symptoms and I get some relief...NEVER pain free-not for a second...and I value the help I do get.

    I hope you enjoy this site...It's nice to meet you and happy holidays to you and your family...Jan
  6. allhart

    allhart New Member

    all i can do is send hugs and prayers most here know exactally what you are going threw,this board has saved me from going crazy!so i hope to see alot of you around,so you can also get the support you need
  7. Cindi

    Cindi New Member

    Glad you found this board. I can really relate to ALL that you wrote!!! It could be my own story. I had a MVA in 1995 (whiplash) and wasn't dx'd w/FMS until 1997. I also suffer with GAD, and have been dx'd w/ Lupus and Sjogren's Syndrome, too:( I'm still searching for the right combination of meds/supplements, etc. to help me cope better with this dx.
    I, too, have a strong faith, and KNOW that God is with me throughout all of this. I also believe that He can heal us, and would love to have it happen to me! If it doesn't, then I know that the Lord has another plan for my life...just not the one I want!

    Keep looking up, and continue to come here. You will get a lot of support and compassion from the people on this board :)

    God Bless,
    Cindi
  8. Shirl

    Shirl New Member



    Hi Visque, welcome to our world. I believe we have more health care personel than people from any other profession on this board! It just amazes me how many of you are ill with these two illnesses. Also that doctors are not more compassionate toward all of you.

    I hear at least once a month on the news how much they need nurses, no wonder people are not as anxious to get into this much needed profession as they used to be, it seems like you all do not get the respect you deserve from the doctors etc!

    I hope your SSD works out for you. I was refused, and truly do not have the energy to keep fighting them, but am proud of you who do persist!

    I hope you find what helps you, I have but its all supplements, I quit with the doctors a longtime ago. Can't take the meds anyway, they seem to give me some serious side effects.

    Take care, and am glad to see you on the board.

    Shalom, Shirl