Need To " SCREAM "

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Feb 14, 2007.

  1. joeb7th

    joeb7th New Member

    If you don't want to read my scream/post...just click off of this right now. I'll leave a good gap between the body of my message here so you won't have to see any of it.

    I want to scream. Just scream . Allow me to do this on this board please. AAAAAGGGGGHHHHH !!!

    I am in such pain, weakness and body sickness and haywire nervous system feelings right now. Just the same as I have been for the last 14 months.

    My shoulders feel like they are seperating from their sockets. The back of my neck in the disc area is like a hot knife is in there. My legs are so sore and weak. Ankles, knees, sides of legs, even hip areas. My arms and forarms and even hands too. Hard to type, hard to keep my hands up on the steering wheel half the time! And to think 14 months ago I was FINE !!!

    My body is so weak and tired and sick feeling and just haywire feeling and this makes me scared and depressed and discouraged...because I have felt this way for 14 months now with no relief !

    But, most of all I want to scream at the inability to get better study and treatment during my 14 month long struggle here.

    I don't mean pain medicine like vicodine or anti-inflamatories. I don't mean anti-anxiety pills and anti-depressants. All these temporary with side effects and addiction problem band-aids are as easy to get as candy.

    And doctors hand these out like candy. I believe doing so makes them feel somehow more justified in their charging you to treat you when they can't find out what is the main cause and reason for all your mind blowing pain and weakness and other incredible medical problems.

    They constantly give you tons of these addictive band aid agents ( usually free samples ) to temporarily lobotomize these parts of your system to chemically block your sensors from feeling this pain. We are not even talking about help for the weakness and all the other symptoms.

    I take these things when I am about to pass out. But I am tired of putting "band aids on major wounds that never heal."

    And beyond this band aid approach, it seems so common ( based on thousands of similar reports like mine ) that when American doctors can't find what is wrong with you they either put you off, dismiss your complaints as exaggerated or psychologically caused ( often in an irritated or condescending way ) and refuse to send you to more well staffed and clinically equipped facilites to get more thorough studies and treatment done. This ending your search-and-recovery road here is my biggest scream! AAAGGGHHHH !!!

    And I don't know where else to look for more hope and real help in a clinical way!

    Here is my experience:

    I live in a fairly well to do area but it is not very populated. There is a limited number of doctors here and most don't even take my insurance. If you don't hit it off with say the local GI group...and they bounce you...there is no where else to go unless you want to drive 50 to 100 miles a way. This GI group did drop my insurance as well as saying they couldn't do any more for me. Since GI problems have been a big part of my suffering, you can imagine how traumatic and devastating it has been to have to find GI doctors so far away and to have to schedule and drive so far away to get even simple tests done.

    This has happened with several other specialties I have needed to seek out for testing.

    Like so many of you...I have developed these incredibly disabling medical maladies and immune system problems. Seemingly out of nowhere ( although I seriously believe these started after I took a 7 day course of a super powerful broad spectrum antibiotic called Levaquin when my electrolytes were already out of balance )

    And on top of these it has been an added incredible struggle to organize getting seen and tested on my own during this last nightmare year when I could barely walk, was in so much pain I felt like I was dying and felt like I was going to lose it from all the stress, anxiety and depression. Add complete financial devastation to boot. And all in an area that is so limited in doctors and highly trained specialists and well equipped facilities.

    But, I have done the best I could do and I tell you. If I put this much time and effort and expense in any other area I would have a college degree by now. I give myself credit for fighting through all these obstacles. But I am hitting a point of exhaustion and dispair and hopelessness now. And this is the reason for my last big scream. AAAAGGGGHHHH !!!

    No doctors here can yet say ( after 14 months ) why all these devastatingly painful and disabling symptoms have all taken hold in the last year. I have been in such dire conditions of not just pain but weakness and nerve system damage and endocrinology problems ( I have been diagnosed with super low B-12 levels and low testosterone recently ) and even perhaps electrolyte or blood sugar imbalances. I have developed bronchial asthma, sinusitis, I now have scarring in my left lung. I have torn roator cuff, fractured vertebrae, tendinitis, and so many other symptoms like GERD, gastritis, you name it.

    But all I ever get is...We see these diagnosed symptoms, but we can't see why they have appeared and taken hold all at here, take these anti-anxiety meds and these anti-depressants and go home" Go home ? Go home to suffer and realize these docs won't do anymore for you?

    But what I have been begging all of them for a year to get me to a university hospital setting where they can retest me in every area all at once in a facility that is much better equipped and staffed to study and evaluate everything more thorougly!

    So that I don't get a random test here one month and then another one two months later and the doctors don't even get together and share their feelings about what they see. And so often doctors have misdiagnosed what they are seeing!

    My asthma and lung scarring and sinusitis and GI problems and torn roator cuff and fractured vertebraes were ALL MISSED at first by primary care doctors who were dismissing my complaints of pain in these areas as " depression!!!"

    I had to ignore their dismissals and make appointments "on my own" with specialists and "only" because of my doing this ...were these very real medical problems discovered! If I had listened to my first 2 or 3 pcp's I would be curled up in bed at home, doped up on sedatives and anti-depressants and telling myself that all these pains I was feeling must be in my head. I would be almost crying out in pain and thinking I was crazy at the same time! Talk about shaking your confidence in our medical community.

    The quality of diagnostic talent here stinks!

    My care here has been so disjointed, so scattered, so misread and so purposely limited it's a crime!

    And I can't get one doctor in this smaller community to refer me to some super staffed facility where at least they can combine all these studies and do a better job of reading the results ! It' almost as if their egos just can't allow them to do this. I can't figure out any other reason.

    And PLEASE ! Quit with the anti-depressants and anti-anxiety pushing!

    I want to find out what has happened to me and HEAL IT !!!
    Not keep numbing my sensors.

    I have personally called and e-mailed most of the top research and treating medical university hospitals around the country and they all say the same thing or never get back at all. "You must be referred here!"

    You name it...Mayo Clinic, Cedars Sinai, U.C.L.A., Stanford, Harvard....I don't know how else to break out of this small town-good-ole-boy, limited but nonreferring situation here. I suppose if I were rich I could just show up at their doors and tell their admissions clerk I am paying cash...and I think then I might get taken in. But I don't have even enough money for anymore co-pays here!

    I have even contacted senators and congress people. They never get back. My insurance company says they leave it up to the doctors. I have told them many times it would be more efficient if I just went to a great facility and had an all at once and more thorough study. But they just say it has to be done through a doctor. So, here I am ...wondering what to do now and in my year long pain. Just wanting to scream at the blocked access to better care and study.
  2. TinaJones

    TinaJones New Member

    I'm so wiped out tonight that my thoughts aren't straight...but I want you to know that I read your post, and I just FEEL your frustration. I'm soooo sorry. I can't tell you how many times that I've wanted to scream, too - for slightly different reasons, but still on account of this illness, my medical care and just wanting to get better...

    I could really relate to you re: what would be if you had listened to your first few PCP's. I applaud you for trusting your instincts. Boy, I could relate. The first three years of my illness were "let's-wait-and-see". Sure, that was easy for them to say...they weren't 30 years old, with six children, etc etc. After we moved, my husband and I have been actively searching out a good team of doctors and I'm making progress. But it's been hard work to DEMAND aggressive care and treatment.

    Anyway, don't even know if any of this makes any sense....sorry. I wish there was more help I could give you. But I admire how much you've fought for your health and such...and I just feel your frustration :( I'm sorry you are in so much pain and all the things you are dealing with...
  3. cheilluminata

    cheilluminata New Member

    I've been in a flare since June 06. Everything started with a migraine (which I still have) and has just continued down a path of frustrated pain, insomnia, brain fog and a host of other problems. I've tried Cymbalta, Neurotin, Topomax, Keppra, Zanaflex, Skelaxin, Elavil, Indocin, Prednisone, just to name a few without success. I've been poked, proded, probed and dismissed by those who know more than I.

    Yes, there are what I call good days with "functional migraines" and there are the days that it takes me forever to get out of bed. Washing dishes is a major undertaking as is taking a shower sometimes. I've learned to take things as they come and try to keep a positive outlook. Unfortunately, the medical community hasn't a clue and everything is an experiment and I'm the lab rat. Sooooo, one day at a time and hopefully this thing will slowly fade away and give me some peace - just for a little while.

    Hang in there, peace does come, even if it is fleeting.
  4. bigmama2

    bigmama2 New Member

    argh. i hear your pain and i am so sorry. i am pretty pissed at the medical community too. I have been exhausted more and more for 12 years and my "life" has slowly been slipping away. i've seen drs for 12 years w this worsening fatigue that is ruining my life and all they say is its depression. i have insisted that it is not. sound familiar? idiots!!!

    No one ever suggested CFS. (again idiots!!) i finally took it upon myslef to figure out what the he}} is wrong w me. so i have spent the last year w my head up a computer screen and in books. CFS sounded likely. I made an appt w a specialist who ran mny blood tests and gave my diagnosis of cfs. (after 12 friggin years!!!!!!!!!) so now finally i am getting somewhere. (If you dont' know what is wrong you dont have a chance to fix it.)

    I also read about adrenal fatigue. Joe please check it out on internet. I have no idea if you might have an adrenal problem or not, but it's worth looking into. some great web sites are dr lam, and dr james wilson. IF you think you may have adrenal fatigue GET the saliva test from diagnos tech lab. costs $100 - $160. you can order it on "canaryclub" website, or clymer healing center website.

    I have adrenal fatigue pretty bad (stage 5 , with stage 7 being worst possible) and i am on treatment (adrenal glandular pills- and they are cheap!) and i am slowly feeling better. my brother is also on the pills (after getting saliva test) and his SEVERE depression of 6 years has lifted!!!!!!!!!!

    take care and never give up!!!!! you are not alone!!!
  5. PVLady

    PVLady New Member

    I am sorry you are having such a hard time. When I took my husband to UCLA to see a pulmonary specialist, I also saw one of their doctors, we were not referred by our family doctor.

    When I was looking for the pulmonary specialist, I went on the website for UCLA and they list their doctors. I got the name of a excellent doctor and emailed his office for a appt. By a stroke of luck they called the next day and said they had a cancellation, so could see my husband soon. Normally it takes months to get into the good doctors. That is how it is. (this doctor does lung transplants and teaches)

    There are tons of very mediocre doctors and few excellent ones. Sadly, incompetent doctors don't realize they are incompetent!! Your experience is not surprising.

    You do not need to have your current doctor refer you to these institutions, you can just find the name of one of their specialists and contact them for a appointment.

    Once you get into a really good doctor you will have more hope. It made all the difference for my husband to see a good doctor. They are out there but you must fight to see them.

  6. Mini4Me

    Mini4Me New Member

    Scream away!
    In fact, I'll help you....
    Ah, that feels better!
  7. Shalala

    Shalala New Member

    WOW ... you sound like me ... lol. I am going to go to paper plates etc because I drop & break and washing just a few dishes totally wipes me out. Now that it is just me and the old kitty ... I am trying to re-adjust everything to a level that I do not have to reach up or bend down (except for kitty box which is very hard for me). I felt a little energetic this morning (after my get out of bed ritual) so I did sweep the kitchen floor and now my shoulder and arm are paying for it :-( I sure can't afford help! I cooked a large pan of spaghetti and dropped the pan (in the sink thank goodness). Didn't lose too much of the sketti and didn't get burned (yay) but did make yet another mess. Now I have to venture out into the mega cold (I am in Ohio) and snow/ice mess to get my skelaxin Rx refilled ( I have to get on "mail" Rx). Then I will pop my pills and put the heat on my aches. I hurt too much to mop the floor I just swept :-( .

    Another day in the life.

    BTW: We allllll want to screammmmmmmmmmm
  8. NyroFan

    NyroFan New Member


    You have gone through so much that I know how you must feel.
    We all different kinds of experiences that .

    Keep working it out with the docs until your satisfaction.

    You take good care.

  9. joeb7th

    joeb7th New Member

    About once a month I post a rant. I admit it is partly just to do this and get some sympathy.

    I always appreicate the kind responses. I know they are coming from real people who have suffered so much themselves.

    This sincerity means alot to me. I also care about and wish the best for you all too. I know you are suffering too.

    But, I admit I am not good at managing and keeping up my search for better care. I am always tired, I don't have patience, I get frustrated easily.

    Somehoe I thought that I would just be sent to a Stanford or U.C.L.A. by one of my doctors. But man, the ones I have mentioned this too just scoff at the idea....and I cannot understand their motives for doing so.

    I guess they figure if you can drive to their office and wait one hour in the lobby and walk into thier exam room and wait another 10 to 15 aren't sick enough to be referred there.

    Little do they know that the entire time you are doing this you are often on the verge of tears the pain and weakness and fear is just overwhelming you. You hold it in, try to keep calm. But I am telling you that 80% of the time I want to drop to my knees and beg them..." PLEASE...PLEASE....send me to one of those big hospitals that have the means to look at everything going haywire inside of me all in a ne week period...and then have there talented staff all look at the results at once."

    This piece mealing a little test here and one three months later and same with doctors appointments 2 to 3 months apart are TORTURE!

    That is exactly what this drawn out, disjointed study is....TORTURE!
  10. mujuer

    mujuer New Member

    I was just where you were yesterday. Scream on. I don't want to add to your pain but I have seen some of "the top specialist" in the big city of Seattle. Useless!!! Sleep clinics, pain clinics, pulmonary specialist, rheumy drs., psychiatrist. Yep, seen them all. I know, I know, many of you out there have too and have been helped but I am like joeb. I have tried so many drugs and not much helps. I had rotator cuff surgery twice in the same arm and was left with a lame arm and disabled 25% in it. I believe the chronic pain afterwards from that started the fibro. I do have arthritis now in my neck and collarbone and my rheumy did put me on a really good rx for that and so now that pain is gone. I am not against drugs, don't get me wrong because I would be at the hospital 24/7 if not for tramadol and it sure isn't the do all, be all. I have been on Requip now for three weeks (rx for parkinsons disease found to help with the rls and pain symptom side of fibro) and it works sooooooooo good but for crying out loud, why can't they get to the bottom of this and get us some real help? We all have to be our own scientist and research experts. Thank God that I have found all of you. Thank you for letting me vent also. Much love.
  11. momof471

    momof471 New Member

    Its sooo frustrating to deal with all of the doctor's, especially the ones that have no clue and won't admit it. I had one pain specialist that got so frustrated , he was yelling at me because everything he had given me, I had a bad reaction to. Well, excuse me, who is supposed to be the professional here. If you don't know tell me and I will find someone that does! I found a Rheumatologist that diagnosed the fibro and helped me understand what had happened to me. I was so scared I was dying of breast cancer.( some of my worst pain is in the ribcage and my upper back) This guy new what he was talking about, gave me information to read and told me a certain book to order, and let me know I was not going crazy, it was not "in my head" and has been very supportive of me since. I've had reactions to most medications, so I'm limited as to what I can take, even supplements because of heart and thyroid issues. Over the past year I'vewhatched my blood pressure go up and all my doctor's agree its to the physical stresson my body because of the pain. It can cause your blood sugar to go up too. I take no pain pills, because I can't I do take Elavil, which is an antidepressant to help with sleep, I've just started Xanax XR due to the stress my heart is taking. These make me feel a little less tense. I'm also on Toprol XL and Synthroid for heart and Thyroid. I take multi- vitamins and a B complex vitamin, but no herbs. I use ice, heat, relaxation Cd's, Deep breathing, gentle stretching excercises and when its not quite so cold I make it to the Y to get in the warm pool to move around, this especially helps with my neck and upper back. It also helps to have places like this to go and let loose and get it out, with people who understand. I don't have answer's for you, but my heart feels for you and my prayer's are with you.

    God Bless
  12. Clay2

    Clay2 New Member

    Joe, I'm just glad you're able to post. I was wondering where you went.

    My care mirrors yours. Fortunately, I'm better off so far, but they don't offer me a dang thing. I keep wondering what the point is of paying for all this medical insurance when it we can be this sick and get no help.

    At least I'm in a bigger city and at year end I can switch out of my stooopid HMO and get different coverage.
  13. joeb7th

    joeb7th New Member

    Wake me up, Hello. I am so sorry if I haven't gotten back to you.

    I have seen your posts. I appreciate so much your sharing.

    I just read your have suffered so much more than me. You have been through so much I can't believe it.

    I consider everything you send as well as others.

    As you know for many reasons especially ehxuastion and sometimes money, I can't get all the supplements that are suggested or test.
    I may have contacted the center for disease control. I have contacted them a couple of times and they got back saying they weren't a diagnositc center.

    I have contacted so many places on my own. Like so many here say, we have to be our own scientist. It is really sad that this country won't commit to studying what we have especially know that they think a couple of million are suffering from it.

    You have to learn so much, think about so much, experiemnt with so much. All while you are wiped out!
    I have tried so many different vitamin and mineral combos.
    When I can afford it I am going to try some more.

    I am so confused about the stomach and intestinal thing and what to do first down there. I want to get probiotics in there eventually. But I also want to do a clean out.
    I want to try glucosomine.
    So, every week or so when I can get an extra 10 or $20 I try something new.

    We are so ON OUER OWN WITH's incredible.

    My persecption of doctors in this country has changed so greatly I almost can't put it in to words.

    To me now they are no more talented than my local auto mechanic. But they act like they are your guardians and you must talk to them with this automatic respect. Sorry, after dealing with 25 of them in the last year...I'm just professionally civil. And that's all I expect out of them back. If I get more, I give back more.

    It's not like what they are doing is charity work. Doctors are paid well for their services. I've always been a $10 an hour employee and I treated people far nicer than doctors.
  14. joeb7th

    joeb7th New Member

    Yesterday late afternoon I took a mega-multi B complex Vitamin, I took an Ester C vitamin and a Magnesium, Calcium, Zinc combo pill cut in half.

    Last mnight i suffered so much with so much pain and feeling sick all over inside and out, I literally moaned and prayed out loud and got up at one point and just had to get some sympthy form my wife. Told her I felt so sick like I was dying.

    I try so hard not to do this becuase in the last yar my lost income, my desperate ttrips to the hospital my moaning and complaining and our much stressed and less happy household has gotten to here.

    I can't balme her one bit for saying she feels so stressed she is having panic attacks too.

    But why would I get so sick and have all my pain increase after taking those 3 pills?

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