This Torture Is Real This Nightmare Is Real

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Mar 23, 2007.

  1. joeb7th

    joeb7th New Member

    The never ending of this pain and the disacknowledgment of it and the stopping of treament for it and or drawn out to months at a time one little test here and there to try to find out what it is all coming from....is my true life nightmare.

    I am on the verge of complete mental collapse, even as I type this, but now when I go to an ER, they try to get me in the mental ward only.

    The pain is so bad and in so many parts of my body all at once, I just feel like I could pass out. I am loading up on Lorazepam today. Even my kidneys have been hurting the last two days and talk about sweats and chills. It's like a 24 hour flu with that horrible body pain running through your entire body. And my upper intestinal tract feels like it is pumping bile or some other poison all through me. Burning me from the inside out. Shocking and tensing my entire body.

    It feels like my nerve system is damaged and I feel everything 3 times more powerfully than normal and I really do have diagnosed tedonitis which makes my shoulders, arms, forearms, wrists, hands, hips, thighs, knees, calves and ankles just kill me with pain 24/7 and they are so weak I can't stand on my feet for more than 15 to 30 mintues. I can't do one push up. When I try to do exercises my body screams in pain for days in these areas.



    I have never been in a psych ward in my entire 55 year long life till last week when my body pain had driven me to tears and a breakdown.

    The psyche ward nurse came down to the ER in our local hospital and told me that if I volunteered to go into the mental health department that this could be a back door for having all my pain and diagnosed body ailment issues looked at again after they were intially looked at one year ago but are worse now and no doctor will schedule me for a second year look at these.

    An ER doctor even came and told me in this preinterview he wanted to X-Ray my upper body again. Great! Lets do it.

    But after I signed in to the PW a doctor did come in and interviewed me again, but never got back to me. They never brought up these physical exams again! Later, When I called this department to ask why I was never physically examined as I was told I would be..the staff member said that this doctor determined that all my ailments and pain issues could be looked at on the outside on my own! But he never told me this.

    That's been my problem! Trying to get this done on the outside has so piece meal and drawn out ( while I suffer for months on the verge of screaming out in pain ) and refused so much, that's why I went to the hospital! You see the insanity of all this?

    I felt tricked into going into the PW. Even the ER doctor told me he wanted to X-ray my upper body after he read my ailment list. But he never came back and that never happened.

    I am in a nightmare twilight zone so scary right now. I am in such physical pain I could just throw myself on the steps of Stanford or UCLA and say "Please, Please, look at everything again and try to help me with this torturous pain." But unless I had a million dollars and told them this, I am afraid I would be picked up by the security people and thrown into the psyche ward.

    If I had that much money though, guess what? They'd be glad to do what otherwise they are saying they can't do.

    Having that much cash makes what I am asking for seem logical and reasonable and doable enough. My lack of cash makes what I am asking for seem crazy from their viewpoint. Funny how lots of money can make crazy things all of a sudden be looked at and described as reasonable.

    In my 54 previous years, this scenario would never have seemed believable to me, ever.

    I have been married 25 years, raised a family, worked all my life. Never a problem with drugs, liquor, law or hospitals. Never saw a psychiatrist in my life.

    But now, I am in this unbelievable scary place of suffering yet being treated like a mental patient.

    I am telling you all, this is just a nightmare. I wonder how much longer I can handle this. The world seems crazy...and yet, so many I go to for help in the medical community just keep inferring that it is I who is acting crazy.

    Somehow, my heart and mind and faith just keep telling myself that I am not crazy. I have just been afflicted with some body toruring illness that they can't find.

    And that acting frantic and desperate and rushed and even mannic and shaking, when it derives from real phsyical torture ...is not craziness.

    Whew! Bed and Lorazepam, here I come.
  2. jole

    jole Member

    You maynot want to hear this, and maybe I shouldn't say it since I am not a doctor and this is only a guess. BUt I too have been treated this way and told I am bipolar. I can't see it, but you know what? Right now I would accept this and welcome treatment if it meant getting to feel better. So maybe SOME of it is psychological, and can be treated. I say get the help wherever you can find it, and if it helps, great. If not then they were wrong, but at least it's worth one more try. I know the feeling of being at the end of trying and not feeling like anyone cares. But we still have to be open to suggestions and until we have tried everything there is to offer, how do we know? I'm not a doc, have no degree, and no I don't want it, but maybe there is an answer here and I'm going to go for it.

    I wish you the best of luck....hang in there!
  3. joeb7th

    joeb7th New Member

    Jolie, thanks for your response.

    However, on the few days I feel "physically" close to well every symptom of any suggested psychological problems I am told I may have disappears.

    Anxiety, depression, mania.

    In their place, I laugh, I am relaxed, I am social, I am sexual, I am productive and I am calm.

    And the term "bi-polar is used so broadly, considering the fact that they say there are 15 ranges of this?

    When you are not at the "hearing voices" stage, it's a broadly debated and controversially area as to whether you have this disorder or not.

    I say, instantly make someone feel as bad as most of us do on here and let them feel this way most of the time for years and after they have been through the spirit breaking emotion exhausting and doctor discouraging experiences,
    You will probably see symptoms in every one of these people that you could call borderline bi-polar. That is what long term pain and depression can do to anyone.

    But I guarantee you that if someone in this condition just miraculously loses all these painful symptoms and feels like they did before they got sick...you would see a return to what you and I and everyone else would call...a totally healthy mental state... probably a euphoric one.

    I would not be acting the way I am if I wasn't under constant excrutiating pain.


    And the reason I keep posting my true but depressing situation over and over is I believe our country and medical community and even our government almost criminally down-plays people like us and our complaints...and the more we post the awful and unpleasant truth, eventually it becomes harder and harder for them to keep propogating this tragic and wrong myth and pretending these illness we have just aren't that bad or prevelant.
  4. nightngale

    nightngale New Member

    You are really getting the run around. Do you have a rheumatologist or can you go to a pain specialist? What is going on here? ARE you on any pain meds? Most get at least Ultracet which does take the edge off and allows me to function, actually gives me energy by taking away the pain. Sounds like you have no good dr. please do not give up I have fought for years for help and believe me, I am still dealing with worse and worse pain, but I am fighting for myself now. I can take more tramadol if I want to. Though it is not helping my new thigh pain. I do not know your whole story, but you deserve better. Don't let anyone make you feel like you are crazy and you do deserve pain relief. You can read and see that plenty on this board get very good pain relief. The best option seems to be through a pain specialist. Lets hear about why you cant find help .... I feel so bad..All the pain and stress can certainly cause anxiety which does not mean you are nuts..I am on plenty of anxiety meds....and this was before the fibro and cfs hit.
    [This Message was Edited on 03/23/2007]
  5. skikat

    skikat New Member

    hey! i know just how you are feeling. i hav had this disease for over 40 years and was also labeled " bi-polar" well guess what? i went to the university hospital in my state as i do about every 2 months for 8 or more years. this is in addition to my md . which discovered i had fibro 14 years ago. as usual , after you have seen over a period of time, and a string of meds that keep wering out, they send you to a pshchiatrist. well, lo and behold , after they had both talked to me for ove an hour, they went into the hall for discussion. came back, sat down , and the head of the dept.said, ms------ i have some news for you, YOU ARE NOT, NOR EVER HAVE BEEN -BI-POLAR!-
    HE SAID, YOU JUST LIKE PEOPLE AND LIKE TO VISIT! I SAID YEP. AND LAUGHED. HE SAID MY PAIN WAS NOT IN MY HEAD OR A PILL WOULD TAKE CARE OF IT. THAT WAS WHAT I GOT AFTER BEING TORMENTED, TEASED, CALLED CRAZY, LISTENED TO LITTLE INUENDOS, _JOKINGLY OF COURSE) BY MY FAMILY AND FRIENDS. I AM NOW ALMOST HOUSEBOUND AND HAVE TO THINK OF LITTLE TRICKS TO KEEP TRYING TO HIDE MY TORTOUS DISEASE FROM THE OUTSIDE WORLD. IT IS A SJAME. BUT THANKK god I HAVE A GOOD md. IAM ON MUSCLE RELAXERS PERCOCET XANAX INDERAL, AND MORPHINE. DOES THAT SOUND LIKE BI=POLAR TO YOU??? THEN THE FAMLY COMPLAINS ABOUT THE DRUGS NOW. WELL. DO THEY LIKE TO HEAR ME SCREAM AND MOAN AND CRY OUT IN THE MORNINGS UNTIL THE MORPHINE AND 2 PERCOCETS TAKE HOLD? MY DR. TOLD E THAT I CAN TAKE 3 PERCOCETS NOW AS THE PAIN IS GETTING SO MUCH WORSE AND I AHVE BEEN ON HEAVY MEDS FOR MANY YEARS. I WOULD NOT ADVISE ANYONE ELSE TO TRY AND TAKE THIS WITHOUT A DR'S ORDER. AS IT COULD KILL YOU IF YOU HAVE NOT GRADUATED TO THAT DOSE OVER MANY YEARS. I JUST HOPE THIS HELPS YOU TO KNOW THAT YOU ARE NOT CRAZY! JUST KEEP WITH THE PROGRAM AS WE ALL HAVE AND IT WILL HELP. YOU ARE NOT ALONE. god LOVES YOU AND SO DO WE. QYOTE"I COMPLAINED, BECAUSE I HAD NO SHOES, UNTIL I MET A MAN THAT HAD NO FEET. AUTHOR UNKNOWN. BUT IT HAS GOTTEN ME THROUGH SOME PRETTY TERRIBLE TIMES. GOOD LUCK... YOU WILL MAKE IT....SKI
  6. bluewing

    bluewing New Member

    I plan to try "Neuragen." My cousin is using it for the pain of shingles and says it helps for about 2 hours. It is oil and she puts it on her wrists and pulse at her neck.

    It has supposedly been approved by the FDA for several ailments, fibromyalgia among them. She got hers from Kerr Drugs...it's a tiny bottle of consentrated oil and is supposed to get into your system through your skin. My druggist is ordering it for me.

    SOME relief would be wonderful, and I'm willing to try it.
  7. joeb7th

    joeb7th New Member

    Just reading these responding postings, there really is a great book here.


    The lady who has had fibro ( or whatever immune system destroying or compromising disease this is ) for 14 years and who at the same time has had to deal with and defend her own sense of sanity much of that time is a story that is just so incredibly powerful, dramatic and emotionally sad. And it's all true!


    To think that someone could suffer that much for 14 years and at the same time have to defend their sanity constantly to the medical community as well as family and friends is truly a horror story. Where is Louis Fletcher?

    And then to be vindicated after all that but still be left with an unyielding pain filled life for the rest of her days.

    Whew, like I said, there is a book here.



    Many of my postings have also tried to expose what I found to be this same shocking and scary fact in my search for diagnosis, treatment and care in my middle sized and medically limited community.

    I have repeated my story and this message enough times now that a few responders here are so tired and irritated with it that they have actually asked me to accept the fact that maybe ( to some degree ) I "am" mentally "not right." And that maybe accepting chemical treatment for this wouldn't be a bad idea.

    Obviously, this works up my sense of sanity survival and right and wrong and trust in my own common sense and of who I am and have been after 50+ years of living in this ole body of mine.

    Sorry, but I'm going to continue to speak up about what I see as a widespread American medical community injustice here. And if I don't it sure doesn't look like too many others will...and it will just continue on.

    And sorry again, but I am personally not bi-polar and I am not taking anything other than anti-anxiety meds thank you. And I wouldn't take these except that I find no other way to relax my unbelievably tense body when my daily attacks occur and do this to me.

    My point over and over in my postings has been to highlight not only my nightmare experience with a disease so much more painful and exhausting and scary than I ever dreamed ( beyond anything I ever imagined before I ever got this ) but more importantly to expose the over-all bad and unethical treatment and care I have received from the medical community I live in when I have gone to them to help me diagnose and deal with this disease. And the treatment like this of too many others with these same physical conditions.



    As I've mentioned so often and I feel I should, that the worst part of this treatment and care is when the doctors quit looking for physical reasons to explain and treat you, and your own mental health and sanity are questioned more and more and looked upon as as a much bigger factor in your complaints and ailments than "they think" you want to believe.

    When you are being pressured to question your own sanity while at the same time desperately suffering, trying to cope and looking for help with these painful emotion effecting and life changing diseases, this turns a sad experience into a nightmarish one.



    This psyche-dumping of immune system diseased patients is so flat out unethically wrong and so common, it is a shocking, tragic and bad sci-fi horror movie injustice in my view.

    It goes so against the ethical codes and oaths doctors are asked to honor when they receive their licenses and degrees, it's an almost criminal cop out. A cheap, irresponsible one that just adds even more incredible stress and suffering on to patients already suffering greatly from these diseases.

    And an injustice that is begging to be exposed!

    What person, who suffers often the kinds of complete body pains and other torturous ( yes, at times truly torturous and scary and exhausting ) symptoms that we do...would not eventually break down emotionally from all of this?

    What person in this situation wouldn't feel anxiety and depression on a major scale after going through this for years and also feeling as if real cures might not be there for them?

    And what person after being treated like a mental case by doctors who have a rushed factory assembly line business practice and just want cases like ours to go away and who are about as compassionate as a car mechanic, wouldn't might finally get angry from all of this?

    More and more my postings and all of yours are clarifying a scary scenario that is real and has taken place far too long and often in this supposedly ethical and greatly advanced medically educated country of ours.


    And that is the widepread mistreatment of people who come down with these torturous immune system damaging diseases.

    And I will fight to speak out against this and to defend my sanity in any way I can whether it be by posting here or writing letters there or calling in to radio talk shows here and there.

    To tell people in our society as much as I can, that these diseases are that bad, they appear to be increasing, and that those people who acquire these are wrongly and too often being told they suffering more from psychological problems than physical ones.

    But you can take your bi-polar and any other psycho-babble excuse diagnosis's and shove them.

    It's time to quit purposely pushing Fibro, CFS and other similarly diseased people into the psyche-gulag which is essentially a version of the cold war Soviet Union Gulag. Complain too much and too strongly and you are gone.

    If we can't find out what is wrong with these people, and they complain too much and they act too anxious and emotional and depressed and demanding ...lets just get them over to the psych people. Maybe they can make them see they they are mentally more out of it than they want to believe, and we can drug them into a more tolerable less complaining state.

    So often this what it boils down to. And if you don't see the tragedy here, you just don't want to face reality.

    I understand helping victims of these diseases with pain meds and even anti-anxiety meds, but when these doctors shove your treatment almost completely into the psyche area like this and " do it out of their own personal frustration and irritation" and in a condescending even insulting manner to boot ( look, you're crazier than you know!" ) it's time to get outraged and courageous, it's time to get mad and speak out.

    And it's definitely time to take a whole new look at victims of these diseases and their treatments.

    What we need actaully are seperate clinics and treatment centers where people like us can not only get the specific care we need without having to go through 20 doctors and years of seperate piece meal tests...and most importantly, that we can be treated by staff memebers who have been educated in our diseases and who not only believe us whole heartedly about our complaints but that also "want" to work in these environments because they truly care about patients like us and truly feel and share compassion with us.

    Someday, someone is going to write the right book about this whole sad and even scary experience of being a victim of these diseases and the too often horrible treatment one can experience in seeking caring help for these from our American Medical community.

  8. skikat

    skikat New Member

    JUST READ YOUR NEW POST.amen! this needs to be dealt with by a special clinic for people like us. you are right. it is not only torture, it is torment and SCARY. i have lived with this torment for over 40 years. since 4 years old so i dont think i was crazy then. just a little girl that was raised in the hills of mo. with 15 brothers and sisters. of whom i would say, half of them had the same prblem in different degrees but none of us talked about it until adults. and the men were kind of macho so they didnt talk at all. but for some reason, was sick or hurting so much of the time that they couldnt hold jobs! what does that tell you???? ----ski
  9. sascha

    sascha Member

    i've had cfids for over seven years now. when i first was constantly sick and flat on my back for most of the week, the AMA/Western medical approach could find nothing wrong. they helped me with symptom relief when they could. this mysterious state of affairs went on and on and on.

    when i finally went to an alternative medical practice, i was tested in all sorts of other ways and plenty was found wrong. i was put on a supplement and chelation treatment plan that improved my condition.

    i am not well by any means, and continue to search for help. i cannot afford that medical place anymore. i do what i can for myself, and i am looking into the Dr. Montoya research study at Stanford University. at least i hope to find out if i carry the viruses Dr. M says are implicated in many cfids cases.

    point is- stick to what you know is true- the "professionals" haven't caught up with you. i don't know your history, but i know there are oh so many people who have gone through what you are going through, and finally seem to find their way out. they kept searching and searching, and finally pieces started falling into place.

    so, never give up. so sorry for all the pain you endure. i hope answers for you are around a nearby corner. Very best wishes- Sascha
  10. StephieBee

    StephieBee New Member

    I was just suffering from back problems that were causing me severe pain. In addition to this I also had GI problems. I went to the ER and was sent home with muscle relaxers when the ones I already have did nothing in the first place.

    My rheumy told me it was all due to a severe anxiety disorder (which i already knew i had) It was causing me to hyperventilate subconsiously and it was lowering my pain threshold substantially. I was literally immobile from the pain and thought that I had injured my spine.

    He prescribed me Xanax 2 mgs to take twice a day and since then my symptoms have improves tremendously. I still have muscle stiffness but it is getting better.

    i also suffer from tendonitis in my left shoulder and I havent experienced any pain from that either. Time will tell if that will come back or not but Ill take the break for now.

    Anxiety IS BY NO MEANS DEPRESSION. It does not mean you are psychologically ill.

    I dont know your story well but i did see that you mentioned you are on Lorazepam (ativan)...have you tried Xanax? I know that Xanax works a little differently than other anti-anxiety medications. It also helps treat IBS...so it could help your GI problems. Possibly it is worth looking into?

    Take Care,
    Steph
  11. joeb7th

    joeb7th New Member

    Of course extreme anxiety and even depression are present here.

    But I still say that having so many physical areas all collapse at once in the same year is a sign of an immune system breakdown and disorder and enough to break even the most mentally healthy people into a pain, weakness and exhaustive state so constant and unrelenting that it can even make you cry.

    But are you crazy for feeling this way and ocassionally desperately acting this way? Of course not. Torture any person or animal for a long period of time and their survival instincts kick in and they would do things that calmer and not in pain people never do.

    Since these immune system disorders are difficult to diagnose and treat the pain and weakness and other maladies associated with them are almost untreatable except in extremely varied and almost experimental ways by doctors and by everyone's holistic efforts on their own.

    Treatment is an experimental free-for-all, a crap shoot. Just another discouraging part of this malady that adds unnatural levels anxiety to your mental state.

    Things that work for others don't work for others. And it takes time and study and money to often acquire many of these involved natural suplement remedies.

    The end result is you are left on your own, with a medical community that too often just throws up their hands. Gives up! Downplays, dismisses and sends you to the psych realm.

    This isn't a scenario the average American is prepared for. Break a leg? No problem. Scratch an eye, same thing, but get an immune system disease...and good luck.

    I purposely call in the psych ward people to interview me now when I go to the ER's. I know in advance I am going to loaded up with atavan at the ER, kept 1 to 2 hours and sent home.

    But I want at least one member of that hospital staff to hear my complete medical history and current crisis story more than a rushed, condescending and downplaying 5 minute eveluation by some irritated ER doc who has treated you before.

    The psych reps do take the time to hear your story. And everyone I ever got to do this with ended up treating me with much more respect and belief and empathy than any ER doc. My complaints and ER visits made much more sense to them after they heard my entire medical history of the last 55 years. But a rushed ER doc? Looks at your records and makes a 1 minute personally biased summation of you and if you look okay and your BP is okay, and yuor record shows any psych visits, it's time to get this nut out of here.

    Last night, this is exactly what happend to me again.

    And every time except two weeks ago, the psych reps end up sympathizing with me and saying I don't need to go to their treatment centers. I point blank ask these mental health reps after we talk, please be straight with me...do I seem psychotic? Shitzo? Bi-polar?

    And just like last night, the answers are always "no". And sincerely answered this way.

    When these Psyhc reps see the medical history of mine the last 15 months that changes so drastically and suddenly from the previous 54 years and what I had done for a living in those 54 years and raising a family and no history of booze, drugs or criminality or some other social problem, their perception of me as a patient and my complaints seem much more rational to them after I have a chance to give them this history which they double check on my records as I speak to verify it all as the truth.

    I have had an immune system collapse. It's that simple. And it has been so traumatizing and isn't getting better, therefore creating great anxiety and depression in my body and mind.

    And is this immune system collpase a serious medical condition? One that occassionally would be helped by hospitalization to check you over completely if for anything to check for nutritional deficiencies or metabolic changes and maybe changes in previously digagnosed ailments?

    All I have been asking is to be admitted and have the over-all tests done again since the first and last time they did all these was over 1 years ago! And since many of my symptoms seem worse...wouldn't a second look see after one year seem logical to any medically trained doctor? In my mind it sure does.

    These anxiety meds can stabilize those specific areas but the main and most important concern here is that phsyically my body is under contant immune system attack and the result is much more suffering on a daily basis than over 1 year ago.

    The kind of 24/7 suffering that if any of these docs or psyhce people ever got this, they too would be saying the same things I have been saying and behaving much more anxiously and desperately than they ever have in their lives.

    I would LOVE to get a doctor who has or has had fibro or some other immune sytem collapsing disease. I guarantee you he or she would be the opposite of these other doctors in their manner and views towards people like us with these Immune System ailments.

    No matter that you tell them that you are having and feeling unprecedented pain, weakness, and nausea and other problems on a level that you never had in your entire life and before your immune system got attacked like this. The kind of pain that if you got this before this disease you would probably rush to an ER saying "Hey, Please, give me something for this! What is it?"

    Also, what ER people don't want to hear is that for every time you do stagger in their clinics, there were 10 or more times that you just gutted these attacks out in your bed moaning and praying...not wanting to go through the humiliating rejection process again by going back to the ER. They think you run up there every time you feel this.

    I only go when I am so close to the passing out level that an instinct takes over in me and just goes. Like last night. My intestinal area ( along with all my normal fibro pain and weakness ) became so excrutiating that not only could I not sleep it feel like something was going to rupture down there in the GI area...a fullness so uncomfortbale it scares you. And your bladder just has to unload like crazy the rest of the night too. Like every ten minutes with me last night. What's that?

    I tell them it feels like I have a steady drip, drip, drip of poison just constantly running through me down there. With gnawing body draining soreness more than sharp pain.

    I was breaking out in sweats so strong, my brain said "GO." And as usual, an extremely irritated ER doc who looked at my records, held up his hands defiantly and defensively and said, "You are going home. I don't want to hear any more about it. Call your wife, Get dressed. You have major anxiety problems that's all." So here I am at home again, feeling as sick and painful as ever, I am just not shaking as much as when I went in.

    We can go back and forth wondering how mentally right or wrong I am but I believe that if one reads my true life experience stories that eventually you either see one side or the other. It's your free choice. Personally I feel something more serious "physically" is going on inside of me...even if it is just a damaged and over-hyper- sensitized central nervous system. They say Levaquin can do that.

    Then at least this explains and justifies my feeling pain much more powerfully than the next person and it's not due to mental states but a real damaged nervous system that would require treatment other than mental health.

    As always, having to defend my sanity.

    But 54 years of phsyical and social work with no social or psychiatric problems, then I get extremely sick and all this happens..and mostly the direction of care is pushed to the psych area and away from the physical. Ignoring your 54 year medical history that is so contrary to this new behavior and complaints.

    You just end up being an anxiety pill popping person in unresolved extreme pain, but at least not acting anxious and irritating and uncomfortbale when you see these doctors or the ER's.

    Good for the doctors...not so good for us immune system damaged suffers.