I am so depressed and confused....

Discussion in 'Fibromyalgia Main Forum' started by MamaR, Jul 20, 2006.

  1. MamaR

    MamaR New Member

    and I am feeling like I want to find a dark room and go into it, go to sleep until I wake up in a new body.
    I know this is not realistic thinking, but I am so very tired of this battle.

    I just called the doctor and they said that my blood work was NORMAL. I have been praying that it would be negative. I have been waiting on this second round of tests for almost a month. My first round of blood tests made my primary doc think that I have Lupus.

    PLEASE...don't misunderstand. I am actually so pleased that the blood test didn't show that I have Lupus, as the DX with it would be so bad...and more health issues....including my insurance rates going higher.

    But, now where do I go? When my rheumy ordered the blood tests, he told me that this test will not tell us for sure if I have lupus, but, he would do it because that is what my primary doc wanted to do.

    They are passing me back and forth like a ball. I have to keep track of everything and my mind doesn't work half the time, the pain is horrible. But, when I mention the pain...it is as if they avoid the issue and what they have me on now only takes the edge off...just sometimes!

    I am sorry as I am venting to you all again, but I need to talk to someone.

    Mari
  2. onlythestrong

    onlythestrong New Member

    There is now one person on this board who has not gone or will go through this with their own doctors,and that's what makes all of us so fed up we just feel like saying to heck with all of this.
    But NEVER give up if you don't go through all the testing you might regrett it later.
    Just know you are not alone and we have all been there I did it for many,many years before I got my answers.
    We ARE here for you so vent when you want.I have faith in you,you made the first step.
    Hang on, this too shall pass,
    Hugs,
    Mary
  3. 1sweetie

    1sweetie New Member

    I wish I had an answer for you and for me and for lots of others that come to this board.

    I use the board to vent too. If I didn't, I don't know what I would do.

    I can't even stay on the computer for very long. I am so sorry that this is happening to you. It is so frustrating. I know what it is to just want to find a test that tells you what is wrong with you...no matter what. I think I feel that why because I need validation and if they could find something maybe there would be a medication that would help.

    The medical field can frustrate you and that makes it worse. Is there a specialist for CFS in your area? I have to travel several hours to go to one and it is hard on my body but it is nice to have someone that understands and that can help you with the medications that you need to make life more bearable. It's worth the money to get a hug.

    Please tell them how unbearable your life is and that you can not tolerate the pain. I do have prescriptions but I have to do so many other things to make it bearable. Even the strong meds are not the whole key but they help make the other options work better.

    Please take care and vent whenever you like.
  4. MamaR

    MamaR New Member

    I thank you so much for your encouragement. I am so down right now. I really appreciate your kind words. I sit here wanting to scream as loud as I can. I have been going thru this for so many years. I am getting weaker and weaker. They are crazy if they think this doesn't get worse!!

    Love...Mari

  5. MamaR

    MamaR New Member

    Thanks to you for encouragement too!

    I travel 100 miles round trip to my rheumy now... and he acts like he forgets me from one trip to next!

    I will find an another doc soon...some way. I just hurt so bad.. I don't want to travel...you know what that is like.


    Mari
    [This Message was Edited on 07/20/2006]
  6. deliarose

    deliarose New Member

    Wot are you taking to help?

    Have u tried Recuperation? A lot of fibro people on one of the yahoo groups I'm on .. swear by it...

    I take it for CFS.. It's hard to say if it's helping.. but people with pain seem to notice the effect much sooner.

    Some expense invovled ... u have to order it from Spain.. but just a thought.

    otherwise, Vit D and antioxidants with every meal.. pretty much took care of my fatigue...Got me out of that hole that we all know so well.

    I;m improving now on antivirals, but in my experience there are some things you can do for yourself without MDs or too much expense.

    Feel better
    Delia
  7. GLASTETTER

    GLASTETTER New Member

    i have only one doctor now my rheumy and this seems to work better. it seems you really find out who your friends are when you tell them what you have, it's like they don't believe you. so i am so glad to find this site
    i am having problems with my mind also and it is like my hands don't want to work

    hang in there
    barb
  8. onlythestrong

    onlythestrong New Member

    I know it seems like you are at the end of your rope,but when you get there you shout for only the strong and I will get back to you just as quick as I can.
    Lord knows I like to talk,and I've also been where you are now.
    But when I look back I realize hey I'm not going to let this crap beat me and I have alot of people who really need me.
    So please believe me I AM HERE IF YOU NEED ME the only time I'm not on here is on the weekend but come monday morning I'm back.
    "only the strong survive" and we will all not be beat!!!!!
    Hugs to you,
    Mary
  9. MamaR

    MamaR New Member

    Thank you all so much.

    Delia,
    I haven't heard of the recuperation. Thanks for your suggestions though. I appreciate your kindness too! I am really down about so much right now. We are getting so deep in debt now... because I haven't worked for three years. I always worked... and it was hard to have to stop. But, my hubby is so good to me. We are using a credit card to buy food at this point. So, I am trying to cut every corner that I can.
    I have just started my app for disability...but, that could take years. I try to think positive...just down.





    Barb,

    Thank you dear for your kindness too. It seems like you know what it is like to deal with the docs too.
    And, our minds not working for us either.


    Bless you both...MAri

  10. MamaR

    MamaR New Member

    I saw your last message and it made me cry... and it helped! You were so sweet to say that you are here for me. I truly appreciate it!! I appreciate this board so much. God bless you all!


    Love, Mari

    I am going to bed for awhile... see you later.
  11. Marta608

    Marta608 Member

    Here, you can use the one I just came out of.

    I sure know what you mean. It's hard being a ping pong ball, isn't it? Dead ends are not better than no end at all.

    Vent to your heart's content.

    Marta

  12. blessedmom2four

    blessedmom2four New Member

    right before i got my dx of FM i was so positive that i had MS, when i found out it was Fm (the truth) i was disapointed...
    So many tests all normal, but how could one be so sick yet there is nothing to be proven wrong?

    after many years of persecution and doubting from so many people i wanted to prove i was really sick, even if it meant i had something worse than, FM. shoot at that time it could have been cancer.

    after learning more about FM, and the illeness, i am so grateful thats what it is and not MS or cancer.

    Things come into our life that is out of our control, i have gone to at least once a week wanting to die, so some one else could step up and take better care of the kids then i felt i was.

    To now wanting to beat this dd and live and do the best i can with the plate that has been made for me, dont get me wrong i still get down sometimes i have my good days and bad days

    I just dont feel like ending y life on a regular basis like before...there is hope for people like us, and i have learned alot from this board.
    Julie
  13. lovethesun

    lovethesun New Member

    I'm sorry that you are hurting so bad.Are your doctors prescribing adequate pain killers.If not,you have to find a doctor who will.Nobody should have to live with so much pain.

    I take Kadian(morphine}for all over and Neurontin for nerve pain.Since I have been on those too,I've been having only mild pain most of the time(except in bad weather)

    ITs hard to find a doctor and quit the other ones.Would he do this for you?I always have my husband at appointments so he knows whats going on and can stand up for me if necessary.I have a good doctor so he just has to remember for me.

    Just some suggestions.I hurt for you.I will pray extra hard for your pain to ease.(((((((((((((((hugs))))))))))))Linda
  14. NyroFan

    NyroFan New Member

    Mari:

    Vent away. I am ready to do one myself. Luckily I have a rheumatologist who helps me. The rest do not gived a good(expletive deleted). Well, except the Urologist, but he has nothing to do with FM. At least he says he is so sorry I have it.

    Wow! Compassion.

    nyrofan
  15. tata1580

    tata1580 New Member

    Praying that they find something wrong with me...boy have I been there..Just know that you are not alone and you have much support here..

    Here's a little funny to maybe brighten you day...

    I feel like my body has gotten totally out of shape, so I got my
    >doctor's permission to join a fitness club and start exercising. I
    >decided to take an aerobics class. I bent, twisted,
    >gyrated, jumped up and down, and perspired for an hour. But, by the
    >time I got my leotards on, the class was over.

    thats how I would do it!!
    to better days!
    Tami
  16. MamaR

    MamaR New Member

    I came back and read this feeling guilt as usual. I REALLY was praying that I didn't have Lupus. I have read up on it and learned alot. I need to thank Jaltair for her info about Lupus. I did not want it to be Lupus! It is just that I have people telling me (even the doc) that it takes more than a blood test to DX....but, he blows me off. I had more than one person to say that if it is the systemic lupus... that it could be doing serious internal damage. I don't want that. I have serious breathing issues as it is.

    I just know that my labs couldn't be normal...because they never are. My ANA has been positive since the 1990's. They just keep saying NORMAL people can have a positive ANA. It just makes me feel like they don't care enough to find out what could be wrong.

    It may be only arthritis, FMS, sensory nerve damage, myofascial pain syndrome, IBS, COPD, Interstitial Cystitis, etc....but they could give me something to relieve this pain.

    Fight..I have to get my results to see what was on them. I will check. The nurse was in too big of a hurry to get off the phone.

    Linda (lovethesun)... I think if I mentioned the word Morphine... the doc would pass out! All I know is there has to be something. I am sitting here right now in serious pain... and all day I feel like ants biting me and I look and there is nothing. I have nervous shakes inside that finally cause me to shake on the outside. I will take a klonopin at bedtime and that helps. I have to double the flextra...just to get 3-4 hours of sleep.
    Thanks to all for letting me complain...and for being there.

    Blessedmomofour, I know how you felt. It must be even harder with young children.

    Also Tami, Marta, Nyrofan, Desertsage... for making me smile.
    I know that you all have very full plates....God bless each and every one. I hope that I didn't forget anyone...appreciate you.

    Oh well....I guess I am still venting...I will stop and read now )-:



    Mari
  17. NyroFan

    NyroFan New Member

    Mari:

    Keep fighting. It keeps you going in a postive way.
    Never, ever give up!! You have what it takes.

    nyrofan
  18. ksp56

    ksp56 Member

    These DD's are so frustrating, which just adds to everything else we have to deal with, every single day.

    Take some time and rest up, if you can. It's time to take care of yourself. Maybe take a little bit of 'time out' to regroup.

    God bless you, Mari.. You will be in my thoughts and prayers.

    Love,

    Kim
  19. Crickie

    Crickie New Member

    Hello Mari ~

    We seem to be going through a lot of the same problems! I have had fibro for 7 years, and lately (last 6 months), pain has become different and flare seems constant...esp. mentally and the panic. My family doc ordered another ANA and it went from 1:40 to 1:160...sent to the rhem. specialist again and what they thought was mild Lupus came back as the "same old" severe fibro! I understand when you almost wish it was something else...even if more to deal with in one way...at least there might be meds to help with all of the "strange happenings" in the body...AND something concrete to tell family and friends.
    I despise this diagnosis and often wonder what I might be like without it....I feel it really holds me back in life...a real pisser!
    Sorry, I'm venting back! I try not to take anything more that Ibuprophen 600mg for pain...occasionally I'll reach deep in the cupboard and grab a Percocet. The med that does work however is Xanax. This helps to relieve the panic/anxiety, puts me at ease for awhile, and it also helps relax the muscles/body. Beware though, can't live without it now...but when something works..what else do you do?
    Keep pushing ~
    Chrisi
  20. doxygirl

    doxygirl New Member

    It's me Doxy,

    Just wanted to stop in and see if your feeling any better?

    I was reading some of the posts that others have left to you and it really put a smile on my face........isn't it wonderful to have so many people here that love us and care about us and aren't afraid to show it!

    Not only that................... everyone here understands! and that is a big big thing!

    I too have bouts of frustration and get down .......usually when it happens to me I end up crying like a little baby...........because I just feel like I can't take anymore and I don't know what else to do but cry................

    I have found though ............when Iam done having a good cry I do feel better...............Iam so sorry that you have been feeling down..........and I want you to know that you are in my thoughts and prayers!

    It will get better............it always does.........and in the meantime you can count me in on those here that are here for you..................

    Just call out and Iam here! I mean that ......I don't know how I myself could survive without my "fami;y" here on the board...........I have never been abandoned or ignored.........I have always felt safe and secure, loved and cared about...........

    And I hope you know that all of those things are here for you too ................we all love you and care deeply about you.......so please let us comfort you and help you through this "dip" in your road!

    Feel better sweetie!

    XO
    Doxy
    [This Message was Edited on 07/20/2006]