This illness is crazy

Discussion in 'Fibromyalgia Main Forum' started by JohnThreeSixteen, Jun 16, 2008.

  1. JohnThreeSixteen

    JohnThreeSixteen New Member

    I am newly diagnosed with Fibro and I don't like it. I want order in my life and like to have control of things. Well, HA!

    Why doesn't anyone know what causes this? So one morning, I read Dr. Lamb's website and am sure it's caused by a back injury pressing on nerves and all that is needed to keep it under control is exercise and stretching exercises. Well, yeah, right.

    Then I read something else insisting it has a hormonal component or that we are lacking in certain vitamins and minerals or that it is an Auto Immune Central Nervous System Disorder. Or that it's neurological in nature.

    Why can't anyone figure out what this is and how to beat it? I stretch, I exercise, I have changed my diet, I am taking Cymbalta, I have de-stressed and today I hurt like hell for no particular reason.

    Please make it stop.
    [This Message was Edited on 06/17/2008]
  2. kalley167

    kalley167 New Member

    I certianly wish they would figure it out. I was diagnosed in 2004. I am sure I had it years before that they just kept saying I was depressed and gave me antidepressants. Sure wasn't that. And it makes me mad how I can feel fine a few days and then Wham its back and I am totally wiped out for days.
  3. JohnThreeSixteen

    JohnThreeSixteen New Member

    You're telling me! I was feeling in control and then this morning, I want my Mommy! I don't like to depend on medications, but if I don't take something this morning, I'd rather be dead.

    Surely someone can figure this out! Or at the very least, make this just as easy to receive disability as any other
    figured out" illness, because I most certainly can't work.
    All I want to do is crawl back in bed and that makes me so mad at myself.

    Are we allowed to have a life? Make plans? Earn a living? Yeah, like I dare a Dr. to tell me this is all in my head.

    (sorry, sorta angry right now)
  4. kalley167

    kalley167 New Member

    It's ok! I feel angry about it at times to. I decided when I was diagnosed that I wasn't going to let it win. I am still determind not to let it. I hate feeling like I do right now. we are leaving in 17 days for Vegas I better be feeling better !!! I want to enjoy myself.

    I keep trying to live my life, but this illness doen't make it easy. And not many people understand it.My hubby is very understanding but my mom doesn't get as well as one of my co workers. She just likes to say oh I am tired too. Its just not the same tired and people don't get it.
  5. harmony21

    harmony21 New Member

    dont know what to say except, dont know, dont know and dont know and once they have diagnosed you with FM other things are Fm too or because of FM

    So then before you know it you have other little things like breathing difficulties, RA, CFS cause you know they are inter related

    this thing is so crazy and if its been around so long under other names WHY yeah why hasnt someone found the cause and WHY are there so many of us diagnosed and prob many more to be......

    angel hugs to you
    and hang in there

  6. kalley167

    kalley167 New Member

    I also test positive for Lupus & RF is positive. But I am pretty sure I have CFS with this as the fatigue is my worst symptom and it usually comes being sick to my stomach. The IBS hasn't been fun either. So I understand the little annoying things that follow hand in hand with FMS.
  7. cookie1960

    cookie1960 New Member

    Dear John,

    I know exactly how you feel. When I was first diagnosed I was glad (because I was certain I had some disease that would kill me off - FM seemed like a relief at the time) and really mad because my very orderly life went right out the proverbial window.

    There comes a time when you stop wondering what caused it. So many theories, so many opinions, so many dedicated doctors, so many quacks - it can consume your every day.

    So now...after 5 years...I just live with it and treat the symptoms. This acceptance has given me some peace. I know that FM will not kill me - and that in itself is a blessing.

    I hope this will help you. And we all pray for a cure.

  8. JohnThreeSixteen

    JohnThreeSixteen New Member

    ...there are other angry Fibro people out there! I WAS talking to some people who were just so whiney and it wasn't helping. I seemed to be the only angry one who wanted to whip the snot out of this illness.

    I was just about to the point this morning where I was gonna take a Tramadol and feel sorry for myself on the couch, but I did the Fibro stretching exercises I found and there is even a TMJ accupressure technique I learned about that I used today (and it worked!) and I took my kids to the pool and had fun. *clap* So even though returning to a career seems out of the ain't gettin' my whole life!!!! We are fighters!!!!!

    (haha, I'll go lay down now)
  9. landra

    landra New Member

    Some of this is neurological and there are 51 chemicals involved in our nervous system. Unlike blood, they cannot withdraw a sample of neurotransmitters and measure" them. Then to make things more complicated, they cannot give you the specific chemical directly - won't go through our digestive systems to our neurological systems! So they have to do things indirectly.

    Another reason is that for some it comes on gradually, for others it is sudden. It is easier to find correlations which can suggest causes with sudden onset.

    The other reason is that these are not going to kill us - and research money goes first to things that will kill people.

    Sorry I cannot make it stop. But keep writing and looking for ways to manage. Have you looked at the articles at the top of the board?
  10. frosty77

    frosty77 New Member

    It's good to be angry - it beats being complacent and believing all the crap the doctors try to tell us (like 'it's all in your head').

    I've had this for 35 years - and I'm still angry!!!
  11. JohnThreeSixteen

    JohnThreeSixteen New Member

    Landra- I spent most of the day yesterday reading on here. I even emailed a couple of open studies to see if I can join. One thing that was really confusing was reading the "what helped" thread. Everyone had so many different things it became overwhelming!!

    I'm going to have to remember all of your names who have posted. Thanks for writing and welcoming me! I'll be coming here often. *waves*
  12. John... A rheum. dr. once told me " fibro won't kill you but there are days you wish it did" AND HE WAS RIGHT. Somedays (today) I want to sit and cry or scream I amm in such pain but don't do it because know it won't help .

    Where did you find the Fibro stretching exercises and especially interested in the a TMJ accupressure technique ? It sounds interesting.
  13. kat0465

    kat0465 New Member

    First let me say Im really sorry your diagnosis was Fibro.
    when i read your post it was the same thing i have been thinking for a week now. wanted to post But didnt know what to say, like you just want my life back!! Frustrated, Sad, Mad,U Name it i've been feeling it!!
    All i can tell you is just dont give up,Do your research & dont let those damn Doctors Bully you or make you feel stupid,OR Crazy!!!
    As i sit here after swallowing my hand full of supplements Plus all the meds from docs,Im hoping your recovery will be Quick.
    If i had to give you one piece of advice, it would be you have to find a Good Fibro/Cfids Doc!! there is a good doc post on here, go to it & start from there. that way your not running around like a chicken with your head cut off, i did that for almost 10 years before i found the right doc. hang in there, were all in this together and we can learn so much from each other!!{{Hugs}} Kat
    [This Message was Edited on 06/17/2008]
  14. AnnieLeu

    AnnieLeu New Member

    I know what you is SO frestrating!!! Is it perhaps raining where you are? I find I just ache something awful when there is rain around. It can be hours away but I can tell by the way I feel. A heated matress pad and heating pads help me, also taking muscle relaxer & pain pills but still there are days when nothing touches it. GRRRRRRRRRRRRRr
  15. marti_zavala

    marti_zavala Member

    I am now learning to channel my energy towards people who can make a difference. It is easy to do and I really feel empowered. First, I participated in the Georgetown Study in Washington D.C. I learned alot about the illness and got some real help.

    Second, I got involved with CFIDS grassroots effort and emailed my senator, my representative and the NIH CFS Advisory Committee. I really blasted them (so to speak) and I felt so much better.

    Here is the website:

    Feel free to give them a piece of your mind.

  16. JohnThreeSixteen

    JohnThreeSixteen New Member

    Ok, now I'm hearing some people who sound like me! I'm sorry I can't see all your names while I type my response...I want to hug each one of you!

    About a Dr....I don't have a good one yet. At least I had one good enough to diagnose me, but she has done a couple of things that upset me. One was when I went in to talk to her after the diagnosis and ask questions...she sent a student nurse in to talk to me. I told the student nurse that I was sorry, but I really wanted to talk to the Dr. The Dr. came in, spent about 15 minutes with me tops and charged me double ($135). The other thing that upset me was when she ordered all the blood tests and charged me over $500, one of them she ordered was a cholesterol test and she didn't tell me I had to fast for it and I TOLD her I had two cups of coffee with cream and sugar. So the results came back and she told me I had high cholesterol and she would give me 1 month to bring it down before she put me on meds for it. So I went out of there ready to make drastic diet changes, researching supplements and herbs and things to bring it down naturally and then I read that it has to be a fasting test.ANNOYING!

    So how do I find a good Dr? Can I go straight to a rheumatologist or do I have to have a referral? If this illness has a neuralogical component, why can't I also see a neuralogist?

    Oh...someone asked about the website where I found the stretching exercises and TMJ accupressure stuff: It is It was only $5.99 to download 51 minute video of the exercises. (Can I post that here?) I don't agree with this Dr. that it is mainly a compressed spinal nerve illness, but he is a Dr., a Pain Specialist and an FMS patient himself.
  17. JohnThreeSixteen

    JohnThreeSixteen New Member

    Yes, it's raining here, lol. It wasn't earlier but it was forecast for early evening and it is now raining.
  18. cookie1960

    cookie1960 New Member

    Dear John,

    It seems like the posts have put you in a better mood! Good for you! As far as doctors go...I have been very lucky with my internists (but I asked prior to seeing them if they were informed about FM).

    When my pain got really bad a few months ago, I did see a rheumotologist. She was very up to date on FM and all the treatments out there. She also ran a few tests based on her initial exam - and we found out I'm in the early stages of osteoperosis - which could also be causing the increase in pain. (I was surprised about this since I'm not even 50 yet).

    She gave good advice and was not "bashful" in prescribing pain meds as some regular dr's can be.

    As far as a referral - that would depend on your insurance.

    Good Luck!


  19. lvjesus

    lvjesus Member

    Too wiped out to post much, but I wanted to say that you can right-click the reply link and choose open in a new window if you want to be able to go back and forth while you are replying so that you can read the other replies while you are typing.

  20. JohnThreeSixteen

    JohnThreeSixteen New Member

    Thanks LvJesus for that suggestion!

    Yes, Cookie, I am encouraged just to know I am not alone and there are kind people who care.

    Marti- I'm not sure if I have CFS or I would respond to the website you posted. But one day, I laid down after my exercises and slept for FIVE HOURS and I wasn't even on any pain meds that would have caused that. I had just gotten over a couple of sleepless nights with muscle spasms in my stomach. I didn't even know what it was but I sure couldn't sleep.

    Cookie (again) I was sure I was dying of something during those two nights, lol. It's funny now but it sure wasn't then!

    Landra- thanks for the explanation of why we can't know how this is caused.

    Kalley- I hope you are feeling well for your Las Vegas trip. *hugs*

    Harmony (Connie) Thanks for your kindness!

    Blue-belle- we sound similar. You're might be because we are both new to this. Maybe Cookie is right, down the road, it will be easier to accept and treat the symptoms.

    Frosty- You will be my bestest angry buddy! lol

    Fibrobutterfly- did you look at the website yet? I might be able to give you my username and password to the Zipidee media site so you can download it to your computer.

    And finally Kat- I went through the whole list of recommended Dr's on this site and didn't find any in my area. I found one 3 hours away though. It might be worth it to take a day trip (non raining one of course in case of a flare, lol)
    [This Message was Edited on 06/17/2008]