Just Need To Share

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Jul 1, 2008.

  1. joeb7th

    joeb7th New Member

    I know. So many of us post with scary make you cry symptoms and nobody can figure it out.

    Every few months I post. I don't post looking for answers anymore. I post knowing no one can help me, but I just need to share when I feel like I could die.

    Doctors are on an assembly line schedule and get irritated if you inject any personal suffering feelings into your visits. You got 10 to 15 minutes. Just get to the point.

    I can't even get a regular doctor anymore. They listen to me on my first visit and stop me and say they aren't the doc for me. Don't have one now and haven't had one for close to a year. Have a couple of specialists still though. GI and an Endo who will only see me every 3 to 4 months.

    The point is I feel so bad I can't help but think about ending it. That's what I feel more and more when I see these docs. I have 5 major areas of my body that feel so bad 24/7 and all together they are crushing me. And I've had this for 2 and 1/2 years now.

    And every few days the intensity of all this physical pain, weakness, and hard to explain stressed haywire and kind of "body flu" like feelings increases to a level that makes you incapable of functioning.

    So bad all you can do is lay in one position and pray to just get through to the next day. Or feeling you could just black out from your body just saying it can't take anymore.

    And to have everything else in your life collapse at the same time like finances ( $ 80,000 in debt and just $800 SSDI income )and everyone around you getting closer and closer to being so depressed from your never ending suffering you feel they could crack and leave you...is just frosting on the nightmare cake.

    But you can't say that or they'll call the psyche ward and it's sedation and incarceration time. And the more they do this, the worse your medical record sounds and you get thrown into the psyche realm " only" versus anyone believing there is something truly physically wrong with you. No more research into a physical cause, problem and possible cure.

    It's a weird shade of American medical system Soviet Gulag type treatment. " we can't find anything physically wrong with you to explain your extreme symptoms, therefore you must be nuts."

    Over 2 and 1/2 years now I have gotten so many sympathetic post responses from all you kind souls on this board and tried as many treatments and individual supplements and asked for tests that you recommended as I can afford...but even with the ones I could afford, they haven't seemed to work.

    Today is so bad I...I can't hardly explain or describe it anymore.

    If I felt like I do today and had never gotten sick and felt like I have during this last 2 and 1/2 years...I'd be racing to an ER at 75 miles an hour and on my knees pleading for help!

    But I cannot go to any ER anymore. My local ER record is a shambles. Too many visits. They say my vitals check out when I go so I can't be feeling what I am feeling or feeling these as bad as I say I am. Call the psyche ward.

    I tell them I am so sore and weak inside and out and that I feel constant 24/7 pain from my fingers through my hands and wrists ( like carpel tunnel syndrome ) up my arms, into my shoulders ( this is one of the worst areas of sorness type pain and so weak too ) down through my rib cage, under my arm pits ( oh man is that sore, just touch it and it's "ouch!" ) and down through my hips and legs and then to my feet which hurt with a tendon soreness and are so weak and hard to stand on.

    My right rotator cuff tore the first week I got this ( all started with a 6 day dose of the antibiotic Levaquin ) over 2 years ago and my shoulders both feel like they have torn but I can't get X-rays every week or even months.

    My GI tract has some so many problems and I am on antibiotics for weird bacterias there.

    My nerve system has felt haywire for last two years. I feel "wrong." I feel hot too hot and cold too cold. Hot feelings then chills. I get prickly feelings and my penis feels weird and when I urinate it never feels normal and strong. I sweat wrong. I often itch like crazy on my arms and scalp.

    I can't sleep even though I am as exhausted as if I haven't slept in 4 days and nights.

    My lungs hurt from bronchial asthma I picked up right after I got sick 2 years ago. 50 years and nothing like this. Never any sign of asthma.

    I am so sore inside and out and not right inside like I've got some type of inflamming chemical running through me and attacking my insides and organs and hormones and making everything feel haywire, sore and weak.

    And I'm sooo tired and scared and there is nothing I can do about it. Today is one of those 9 to 10 on a scale of 10 days.

    But if I went to an ER I know they would just sedate me and maybe check those vitals and then tell me in an angry and humiliating way that nothing's wrong with me.

    I have felt my pulse and it seems normal although slightly slow...50 to 60. I don't have a fever. I am sure they would not find anything wrong with my blood or urine. They'll conclude it has to be a serotonin issue and be mad I just don't stop coming and load up on one of the serotonin reuptake inhibitors.

    But when I did I didn't feel any better and had many bad side effects and ballooned 40 to 50 pounds overweight which I have never dropped.

    Hope this sharing of mine isn't so depressing and repetive you all get upset with me. But this board is the "only" place on Earth I can do this. And when you feel this bad...you just crave someone to tell this to.

    I wish I had shown improvement with all the advice you guys have shared...but I just haven't.

    Thanks, JB
  2. texangal81

    texangal81 New Member

    WE know you are sick, that what you have it real! Every doctor you've ever seen should have their licenses revoked. I've been lucky because so far I've received mainly compassion and only one friend who doesn't seem to get it (she keeps saying "you just need to get laid" and laughs. I don't find it funny). The horror stories I've heard makes me wish I HAD become that ambulancing chasing lawyer I considered many years back. A doctor almost killed my mother because of his flippant, uncaring attitude. While she was in intensive care for 10 days, near death, they say he prayed over her every morning. You're darn right he did, he KNEW he screwed up big time and was afraid we'd sue him. WE should have.

    I know this doesn't help your suffering any, but I get so angry when I hear about some of these doctors. Does anything relieve your pain? Does anyone give you anything for it?

    I wish I could do so much more, but I want you to know I understand your pain, your frustration and your desire to just be rid of it.

    Take care,

  3. joeb7th

    joeb7th New Member

    Erin, I am losing hope. I have the vicodin and of course this temporarily numbs you. I have Xanax and yes, it can make you sleep. But I can't take this 24/7. I fight doing so anyway.

    I just read BigMomma's inspirng post for CFS. She is an inspiration. Thank God for the people who feel better and don't abandon us left on the board who are suffering.

    Think of the generosity of people like BigMomma who could easily say " I'm better and I don't need to go on that depressing board anymore."?

    But here is a lady who is improving and who is still willing to share what she can with us.

    But my symptoms do seem different from hers. Some the same.

    But everything together is so confusing and expensive and you just don't have the energy or money or doctrs cooperation to try everything all the time.

    All I have left anymore is prayer. And I know so many who come on here are as bad off or worse than me. I pray for them too.

    It's a great board though becuase it is the one place where you can at least share and maybe help yourself keep faith for a miracle and keep trying.

    Thanks, JB
  4. jasminetee

    jasminetee Member

    I know how you feel. I feel the same way although some of my circumstances are different. I know most people can't believe the amount of pain and illness I deal with and I have found that if I do finally get people to believe me and to realize that I've already done and continue to do everything I can to help myself they often get depressed and I hate causing others to feel depressed too.

    There's no way that doctors can really understand what we're dealing with especially since our tests usually come out looking just fine.

    Hang in there. I know it's tough and everything seems impossible right now but we can get through it. One thing I do is I tell myself that as long as I do my best every day, and that often consists of just laying around, I'm doing what I need to do and that's all that God asks of us. I know living like this is extremely challenging.

    [This Message was Edited on 07/01/2008]
  5. Cinlou

    Cinlou New Member

    I was just thinking about you and there you had just posted! I was hoping that you had found some relief...

    So sorry you cannot get doctors to help you.....Just wanted to let you know you are not alone with your pain....the physical and the mental pain you feel....we can all understand that.

    Just want you to know I care.....hang in there..keep us posted..
  6. cookie1960

    cookie1960 New Member

    I have FM - dx'd 5 years ago (probably had it much longer). I feel your pain, your depression, your hopelessness. I know there is nothing I can say to make your pain go away - but just to let you know that you are not alone in this battle.

    It sounds like you are against anti-dep's - but I can truly say they have saved me. After 5 years I have accepted my FM and fight it every day. FM is my enemy, but as the saying goes: Keep your friends close, but your enemies closer.

    I hope you find something to ease that ache in your body and soul. Find your peace.

  7. joeb7th

    joeb7th New Member

    As always..kind souls there to let you know someone cares and doesn't feel you are crazy. Thank you again.

    Reading Bigmommas post...I always wondered about my adrenals. I ask the docs about this and they say my blood work doesn't show any problems there.

    But I was raised in an extreme violent and abusive childhood form the age of 9 and 24/7 until I left home I was on a nightmare fight fo flight level and could not function or sleep. I had a few nervous breakdowns even at that early age.

    I was always the jumpy sort going through my life. Always on edge and nervous and scared and tired and depressed. Often I have wondered whether I was a walking candidate for adrenal failure. I also had shingles which is herpes zoster and BigMommas post about anti-virals intrigues me.

    I just wish I could feel 30% better than dying and have more energy and finances to keep trying things like her program.
  8. Empower

    Empower New Member


    I totally "get" how you are feeling

    Why, I was just at the doc's office yesterday, describing my symptoms and he just looked at me like I was a wacko

    When he left the room to get a nurse for yet another EKG, I just broke down and cried and couldn't stop

    I AM feeling a little better today, not sure why, but I will take it

    Please don't ever give up hope of a better tomorrow

    You do not know what is around the corner, pray for a miracle, it can happen

    I will pray for you

    Take care
  9. joeb7th

    joeb7th New Member

    I do...all the time. I see these inspiring postings like Big Momma today and I think...Oh Man...what if...?

    I want to run out and get the stuff she mentions but you just can't for many reasons.

    I sometimes have this dream that some place like the Mayo clinic or maybe some top medical center in England or France takes me in and they do things differently than here and they find out my problem and it gets fixed!

    But who boy....this whatever it is is such a scary and horrible but REAL nightmre...that you'd think someone would have made a movie about it or something...especially when so many seem to be afflicted with forms of "it."

    Maybe a film where a person getting this is treated as a psycho and is almost drugged into a One Flew Over The Cuckoo's Nest type situation and some heroic doctor comes along and tells all the other docs "They" are crazy and cures this person.

  10. Rafiki

    Rafiki New Member

    Man, I hear ya, the "icing on the nightmare cake." Great turn of phrase. I hear ya.

    If everything started for you with the rotator cuff injury following Levaquin, sounds like you were "floxed". I bet people have suggested this to you before. I haven't researched this issue very much so don't know what to say about it. Have you googled? Is that a silly question?

    However this happened, we get it. You are not alone!

    Let's find out more about Levaquin and how people recover from getting "floxed", ok?

    You are nowhere near the end of the line. That's the good news and the bad news. Ok, big guy, let's get googling!

  11. Rafiki

    Rafiki New Member

    You do know there are class action lawsuits over Levaquin, yeah? Lots to think about.

    Peace out,
  12. msbsgblue

    msbsgblue Member

    I know very much how you are feeling. I feel so inadequate these days, not like myself, not doing any of the things I use to do, and not keeping up my house like I use to, always perfection before.

    You don't say where you live. Have you checked to see if your state has a state insurance program, ours does.

    What about a new doctor or looking through the good doctor list here.

    I had good doctors back in MO, now I am in WA and have one that at lease trys to help, pain meds mostly but that gives me a quality of life I otherwise would not have.

    I feel about like you describe, I had been in a major flare since last Sept. Tired, pain off the scale, and worthless not to mention wondering if I was dying.

    I got a two day reprieve this last week now back to the fun and games.

    Can you go someplace else to find a doctor who at least believes this dd exists?

    Wishing you well in all ways, and hang in there.

  13. pw7575

    pw7575 New Member

    I just wanted to stop in and say that I too wonder about you from time to time and always hope that you have found some relief. I have read the nightmare that you have gone through with this and hoped that you would find something that helps. Unfortunately it doesn't look like you have found any relief yet but please don't give up.

    If money is stopping you from trying new treatments I might suggest a credit card. You said you are tons in debt already so I am not sure if you can get approved for a new credit card. But if you can...do it and then buy any treatments you think might help...even BigMammas treatment stuff. You can always declare bankruptcy at some point if you have too. I know this might sound like awful advice to some people BUT desperate times call for desperate measures and to me your life is certainly worth it.

    Oh and by the way...doctors testing for adrenal fatigue is pointless. Most of the time it isn't going to show up on the tests they do for adrenals. If you suspect adrenal fatigue than you are probably right. A lot of people with these DD's have it. That could be an avenue for you to pursue.

    Anyhow...I wish I could be more help. Just wanted to say that we understand how awful and nightmarish these DD's are and that you can always come here for support. We know you aren't crazy and that those doctors are idiots.

    I hope you find some relief. I will say a prayer for you.

    Take Care!
  14. Rafiki

    Rafiki New Member

    do check in when you can.

    There is much to be learned about being "floxed".

  15. Rafiki

    Rafiki New Member

    Check in with us, ok?


  16. suzette1954

    suzette1954 New Member

    You are not the only one who thinks death is the best thing for us. Ive been fighting this FM for over 5 yrs. I lost my job and had to fight for SSD. So not only was I sick, but now I dont have any way to contribute to my family.

    All of my work friends left me yrs ago because I couldnt do anything with them. My hubby(who has always supported me) told me the other day that all I do is bring everyone down. That was a slap in the face. The only person I thought I had in the world and he said none of my family wants to be around me. I have always put on the act of being fine but I guess it wasnt working.

    My PCP gave up on me and sent me to a rheumotologist who sent me to a neurologist who sent me to a psychologist who sent me back to my regular dr who sent me to a pain clinic.

    Now Im in the middle of a nightmare. The pain dr. has his patients soo overbooked. they are lined up around the room and out the door. He stuck me on morphine which gives me horrendious dreams and I dont know where to go next. I dont want to take 36 prescriptions anymore!!!

  17. joeb7th

    joeb7th New Member

    As always I am reading every post. I do read these.

    Many over and over and I take notes and say to myself ...when I have the energy and maybe funds I will try as much of what you advise as I can. I do try as many things as I can. I have so many vitamins. I ask for certain blood tests when I can.

    One of you even gave me the number of a doc in England. Wow, I would like to try that.

    There is a doctor in encinatis CA named David Gerston I believe who if I had the funds would make an appointment with ASAP. He is supposed to be a top doc and works with natural supplements. But I called his office and they don't take insurance. You have to pay I think $1,500 up front for him to start getting testing you. That would only happen if I won the lotto. But who knows...if I ever got lucky I could contact someone like him.

    Suzette. You and so many others are experiencing not only the physical and emotional pain from these immune system malady's but also the relationship stresses with family and friends too.

    Isn't this a major part of what makes these maladies so sad and even tragic?

    I so understand what you are sharing about this.

    Once a month or so my poor wife will want to go to a movie and every six months now I am feeling so much worse I can't even do this with her. I don't want to shift around in discomfort and distract and depress her while she watches the movie and feel scared my whole body will go into one of what I call "droppings" where I feel I culd pass out and need to lie down. So now I just tell her to go by herself.

    I don't want to do so many minor things that I once took for granted. But it has seperated us into different lives.

    In my pitiful situation, it is my wife who is working full time and trying to cover all our bills which we never do. If she walks which I wouldn't blame her...I honestly think I would be homeless. I live in California and 800 a month wouldn't get you anything but a $600 a month room.

    I hate having to lean on my wife and yet at the same time I am honestly afarid of facing all this on my own with my little income. Horrible dilemma.

    My credit is shot and I have ruined my wife's credit too.

    I can so relate to everything everyone on here has shared.

    Suzette...I read and consider psoting like yours and say "man, there's so many of us in this nightmare." Thanks and good hopeful thoughts to you too.

    And to the other posters and their suggestions. I read them all and often copy and save their postings and try to get back to them and follow up on their advice as much as possible.

  18. Pansygirl

    Pansygirl New Member

    Hi Joe,

    I'm new to chronic fatigue and FM but not new to pain as I've dealt with daily headaches and migraines for many more years than I care to count. I do understand your pain .
    I try to stay positive but it is very difficult to do.....and I'm still in the process of helping my family understand what is going on with me since I look "normal" but I sure don't feel normal.........

    I did want to say please don't give up , keep praying to feel better.
    Keeping you in my prayers that you will find something to help ease your pain and a different doctor that will be understanding and helpful for you.
    Take care
  19. I am so sorry for all you are going through. And believe me I hear you, I have had such pain I want to scream, cry, and often ask God why I have to deal with this extreme pain. I hardly slept last night as the pain was so bad. I think its ridiculous these drs can't help us. If it were them they would find the answer to our pain.

    I pray you find some solution and have less pain. God bless.
  20. msbsgblue

    msbsgblue Member

    But why not seek credit counseling where they can work with your creditors to get your payments lowered or as a last resort file bankruptcy.

    You do know that when you do that you have a choice of keeping what bills and property you want and getting rid of those you don't?

    It is just a thought.