Here we go again,

[Dan]

Two weeks ago - the 9th - something popped in my hip.  At least that's what it felt like.  By Thursday - the 11th - I couldn't stand to put weight on my left leg.  The pain was horrible.  Had my wife take me to one of the 2 ER's in town.  Told them that I took powerful pain meds and they weren't touching the pain, so I knew there was something really wrong.  We sat in the waiting room for an hour before I called the other hospital to check on the wait there. 

They said to come on over so we left but before I could leave I had to sign out that I was leaving of my own accord.  The meds I normally take had worn off and I couldn't stand it anymore.  I could not walk.  We made it to the other hospital and they took me right in!   Only to wait in the treatment room.  Took me for ex-rays after 20 minutes.  45 minutes later they came back and they gave me a shot of who knows what - it didn't do anything - and an hour after that a doctor (? short, dark complected, spoke in broken English with a thick mid-eastern accent) came in.  I explained again what had happened and that I could not stand up, walk, lay down, or sit on it.   

He asked if I'd had a shot.  Yes, it hasn't done anything.   He said the ex-rays showed no fractures, just arthritis.  I asked him what could be done.  He said that he could give me the phone numbers of an orthopedic surgeon to get an injection of lidocaine and steroids and a pain clinic.  I asked if the ortho would see me tonight.  "Tonight! No.  Not tonight.  They do not work at night!"  He acted as if I were insane for asking.  I became immediately pissed.  "What do you mean?  I need treated NOW!  That's why I came here.  Is this not an EMERGENCY ROOM?  I have an EMERGENCY.  This is more pain than I can stand.  You've left me in here for TWO HOURS to tell me Not Tonight?" 

"I can give you some pain pills."  he said, backing away from the gurney as I struggled to get up.  "I DO NOT WANT PAIN PILLS.  I said.  I HAVE PAIN PILLS.  I WANT TO KNOW WHAT IS WRONG AND I WANT TREATED.  IF YOU CAN"T TAKE CARE OF THAT, THEN YOU GET ME WHAT EVER IT IS I HAVE TO SIGN SO THAT I CAN LEAVE.   NOW."   I didn't raise my voice.  I told him what I had to say in a very direct, evil, tone of voice.   

I struggled to get my clothes on, so pissed now that I was half way crying.  Betty went to get the truck.  I pulled myself up and off the gurney to put weight on my left leg and winced as stars seemed to burst out behind my eyes.   I started sweating and got dizzy so I held on to the gurney with both hands and closed my eyes.  It seemed like it was taking forever to get the papers I was supposed to sign so I let go of the gurney and pitched myself towards the door.  Even with using the cane, every step was, - -  how can I describe pain like that?  Anyway I got around the door jamb and looked around.  The nurse who had given me the shot was sitting at a desk so I called out to her.  She turned around and I asked how much longer it was going to be.  She said the Dr. had to sign off on it yet.  That bastard was sitting at another desk not 4 feet away, writing something.  I hoped he could feel the hatred that was pouring out of my eyes and into his skull.  I wanted him to feel the same pain I was feeling.
   
I called the neurologist at eight the next morning - Friday - to see if he could give me the shot.  He only gives injections into the muscles in the back.  They suggested I see my regular Doc to be referred to an ortho-doc.  I told them with my insurance, I didn't need a referral.  I just needed to know who to go to.  "Sorry it doesn't work that way."  So I called my doc.  Doctor Bozo.  His nurse told me that he could give me a shot in the hip, but he was leaving at noon so I'd have to wait until Monday.  It was the best I could do at the moment so I took it.  I called other ortho-docs in the phone book and was told, I'd need a referral, it would be at least 10 days and sorry we don't take new patients. 

I called the neuro's office back and asked if there was a chance that it could be a pinched nerve, because the pain seemed to shoot down my leg when there was pressure applied to it.  The receptionist said she would have the nurse call me.  And she did!   Late in the afternoon.  I explained my question to her.  She told me she would talk to him and call me back. 

7:30 Monday morning Dr. Bozo's nurse called.  "Dr. Bozo is sick and won't be in today.  Would I want to reschedule?"   "YES. I would.  I want the earliest appointment on Tuesday."   It would be at 9:30.  So I took it.   At 10:00 the neuro's nurse called.  He wanted to see me on Thursday to do an EMG.  I said OK and took more meds.

All this time, I'd been eating methadone, tizanidine, baclofen, tramadol, skelaxin, cymbalta, generic celexa and tylenol and getting no relief.  I've slept less than 2 hours during each 24 hour period.  And I've cried a lot.  I've thrown up.  I've sworn revenge on all the stupid people I've had to endure.

And then it was Tuesday at 9:30 and I'm talking to Bozo.  "I don't know why she told you I could give you a shot in the hip joint.  I don't do that.  The elbow? Yes.  The knee? Yes.  But I can't do the hip.  Then out of the blue "Why are you taking 60 mg of Cymbalta and 60 mg of the generic celexa?"  "I was taking Lexapro and Cymbalta.  The insurance co. raised the co-pay on the Lexapro to $88 a month and suggested I take the generic Celexa.  They said it was the same thing." I said.  "Well it's NOT the same thing and you shouldn't be taking that much of both of them together.  Stop taking one of them."

"And why does Dr. G. (the neuro) have you taking all this other stuff?  Baclofen and tizanidine?"  "Because I have Fibromyalgia."  "You don't need to be taking all that stuff." he said, and he walked out of the room.   "Are you finished?"  I asked him.  "Yeah", he said.  "Why?  Is there something else?"  "Well, yes there is." I said.  He came back.  "What is it?"  What am I supposed to do about my hip? I was astounded that he'd just walked away.  "Has it gotten any better since - when - last Tuesday?  A week ago?"  I looked up at the ceiling and silently asked God to smite this asshole.  "Better?"  I said.  "No.  It has not gotten better."  "In the sense that I've stopped pissing down my leg when I put pressure on it, then yes.  But I think that is because I'm getting used to it."  I said.  Stood up, made sure I had everything I came with, stepped past him to the door, and left.   Dr. Bozo doesn't like Dr. G.   I think the reverse is also true.  There is no cooperation between them.

Thursday came and I went to see Dr. G for the EMG.  I was nervous because I knew what was coming.  I'd counted back and came up with 6 others I'd gone through.  This was going to be the 7th time of receiving sudden shocks of electricity into the neural pathways and then the real hell:  Having the needle stuck into the muscle was enough to make me sick but then having to tense it, "Push your foot against my hand, harder.  Ok. relax."  and then the needle goes in another place,  "Tense that muscle.  More.  Ok. Relax."  and then another, and another.  Every time there is a sound, a noise that sounds like a small motor that increases in speed as the muscle is tensed and slows as it relaxes. 

"Ok."  he says.  "All done?" I ask.  "Yep.  That's it.  We're done."   "Well, what is it?"  I ask, sitting up and leaning forward to let my head hang down and hopefully stop the nausea that's built up.  "You, my friend, have a big time pinched nerve at L1."  he told me. 

"Well shit."  I said,  "What's L1?"   "It's the lowest vertebrae in your spine", he expalined.  "What do I do now?" I asked.  "We get you in for an MRI and then see if we can get someone to fix it."  He told me.  "I'll have M. get you set up for the MRI.  She's not here today, but I'll have her get it set up and call you."   She called the next day and had it set up for the 25th.  Tomorrow.

Fast forward to today.  M. called to tell me the insurance has denied the MRI.  "Why?"  "Let's see."  she said, as if she were reading whatever it is she had for the first time.  "It says there is no medical necessity", she said, "that the last notes that were transcribed were from July 13th" or something "and there is no mention of needing an MRI at that time."   "But I saw him last Thursday, that's when he did the EMG and said I needed the MRI."   "Oh. Apparently I didn't get those notes until after the request was sent in." she said.  "Can you call them and explain the situation, please?"  I asked her.  "Oh, I sure will.  And then I'll call you to let you know whether or not we cancelled the appointment.  I'd hate for you to be charged for that appointment if they can't do the MRI." she said.  "I'd hate that, too."  I said, trying to calm myself.   

Now I wait for this obviously inept person to try and straighten out the mess she's made and call to let me know if I have to wait for another week. 

Is this a test?  Do they want to know how much they can pile on before I snap? 

I'm going to run out of methadone before it's time to refill it.  I can't wait to tell Dr. G why I need more before it's due. 

The following happened the night after we got home from the ER fiasco.
I didn't tell you about my wife telling me how all of this is my fault for not doing the physical therapy excercises they gave me 2 years ago.  And how I have given up.  Since I was diagnosed I've just given up on everything.  I've given up on trying to get better, on us, our marriage, and everything and worst of all, I've given up on myself because I don't do anything except lay on the couch.  I don't do anything to help. Ever.  And haven't since they told me I had fibromyalgia and he (the Dr.) told me I had to keep busy and work all I can and I interupted her.

I said, every day I get up and wipe the slate clean.  I try to be the best person I possibly can.  And I do as much as I can.  The difference between us is that you wake up in the morning and start your list of the people and everything that you hate.  You carry that grudge with you all day and all night.  Everyday. 

She told me that EVERYBODY that she knows with fibromyalgia gets up and goes to work everyday.  NOBODY has it as bad as I do.  I told her that she was wrong.  I didn't know how many people she really knew who told her that they had fibromyalgia, but it couldn't be that many.  That research has shown there are varying degrees of the disease.  If she had kept up on it like she had started out doing, she'd know where the research was and what it showed.  I told her that she generalized everything, that NOT everyone with fibro could get up everyday, let alone go to a job.  I told her that I did the best that I could.  I said you are the one who has chosen to be unhappy, and there was nothing I could do to help her with it, that she had to make up her mind to change.

It went on until I told her it was 10:30 and the dogs had not been fed.  So I got out to the shop and all the meds I'd taken hit me like a tone of bricks.  I managed to get them fed before the blackouts started, but sometime between then and when I made it inside at 1:30.  I dropped my glasses and stepped on them, scratching the lenses.  I realized at some point that I was wet.  Sweat was dripping from my hair.  My clothes were soaked, even my shoes were wet. 

When I got back inside, my wife was in the shower.  I went back out to the porch and had another cigarette, hoping she'd be out soon so I could get in.  I was still having moments where I'd suddenly wake up and realize I'd dropped my cigarette or whatever.  Finally I heard the shower stop and gave her a few minutes to dry off before I went in. 

I got undressed and reached for the shower curtain to open it and started throwing up.  Luckily the toilet is right there and I made it.  That went on and on even though no more was coming up.  I felt something cool on my neck and looked around to see my wife standing there with a cool washcloth.  Rinsing it in the sink and putting it on the back of my neck.  "This is different."  I thought.  "Maybe she does still care." 

I lived through it.  Learned a lesson, too.  Pay close attention to the amount of opioids and muscle relaxants you take.  I still don't know if I meant to take that much or not.  I do know it was on seriously mucked up day in what has been a seriously mucked up fonth. 

[GrumpyHillbilly]

My goodness Dan! I know where you are coming from mostly, I'm going through something similar right now except it's in my back and it is my fault from a few years ago, it's just never stayed like this before! Hope everything gets straightened out so they can get you fixed.
                                                                                                Jason

[TNDadx4]

Wow, Dan, I don't know where to start...

I'm sorry for the big ordeal that you've had. It's a shame that you had to endure the ordeals at the hospital. SOmetimes it feels like they have x amount of time per patient and they have to resolve that "case" and move on.

EMG: Personally, I can't stand them. I've only had one and it hurt like crazy...long needles and electricity? I can sympathize with what you went through.

neurologist/injections: My old regular doc was like this... Only shots in the back and I have to schedule them for Mondays after 3:00 What? I can't schedule a flare. I need it now!

insurance: "no medical necessity" this phase really grates me. If the doctor says that it's neccessary, that should be it, after all, he's the doctor, right?

Wife: I have fibro and go to work most days (It's very, very hard), but I think that I am the exception. My wife has two friends with fibro  and they are in a similar state as yours. One works, but misses A LOT of work. The other is a stay-at-home mom who needs help to do housework and take care of the kids because she has really bad days a lot. My wife gets frustrated at my fibro from time to time as do I. I think that it has to do with them accepting a long-term condition and how they hoped things will be. I pray for understanding for your wife and for peace for your home.

With all that you went through and the pain that you are in, I'm surpised that you could put a cogent sentence together.

The good news is that they did find out what was wrong. There will be better days! Keep pressing on!

[countryboy]

Dan,

Really sorry to hear about your pinched nerves.  I have a similar problem with pinched nerves between L3, L4 and L5.  Two of those discs are herniated.

My pain is constant too, but about 80% of the time it is just a dull ache.  Then it kicks in for a few days and I think that I will never be able to walk again without leaning over and using  2 canes.  Luckely though it usually passes in a few days and goes back to the dull ache.

My back dr. said that he could do surgery and try to correct the problem, but he said that 50% of the time it does no good and over 10% of the time it makes things worse.  What a hell of a prediction.  Odds don't seem to be in my favor at all.  I have not decided as of yet if I want to take those chances.  I don't do well with surgery as I have very bad reactions to anesthetics and my b/p and heart rates drop out of sight.

This diagnosis was 2 years ago and as of yet I still kick it around.  Especially when the paid gats to the point that I feel like I would rather be dead than where I am at.  I stay away from the opiats as much as I can as they give me very nasty night mares.  But when the pain reaches a certain level, there seems to be no alternative but to take the damned pills.

Wish there was something we could do to get off this damned merry go round.  The stress factors really suck. 

Keep us informed as to what is happening.  We are here for each other even if we can't halp make the pain go away.  It helps to talk about it with others who know what you are going through.

Glad to see that the wife seemed to turn her thoughts around.  That releives a lot of the stress.


 :horse:

[ThomK]

I wish we could help each other.  

I wish there was something we could do.  So many of the doctors don't really understand what they're treating, and don't care.   I have great doctors, I think, and even they are really clueless a lot of the time.  They try, but they don't understand, and they don't have a sense of the urgency or the need.  And clearly you have it far, far, far worse than I do.  You don't even have good doctors.  

I don't even know what to say about your situation with your wife.  I don't understand how she can blame you for the progression of your fibro.  Are you responsible for aging and the flu too?  

All I can do is hope something good happens and turns this around for you.  Please hang in there.  I know that's easy to say.  I blow it off when people tell me to hang in there too.  But, what else is there?

[avorado]

Dan :
     Every time I see a post from you .. I think that I am in for a chuckle or two. You have a great funny bone.
     This post is a bit different and I am sorry that you have encountered a few speed bumps on the way between Drs and ERs.  I know that you will cope and I wish you all the best in finding the good out of this.
     Just to know that there are people her that sincerely care may give you some comfort. What a great site !
Better days ahead.     Henry

[ToJo/Todd]

Dan

I have grown to think that the two us us really click, through our posts and even the ones to others I am sure that if we lived closer that we would be the best of friends. That being said as I read of your ordeal tears came to my eyes as I knew that there was nothing to do to help you my friend. I am so sorry that you are surrounded by idiots that are supposed to know what they are doing and on top of that they are supposed to care.

Just know this that your Texas buddy will pray for you and that you are on my mind. You are not alone just geographically challenged.

[ronr]

You should just stay in front of your computer so you don't get hurt and can keep us up to date.

The hospital run around is outrageous, as I know from taking my own daughter in.  First the immediate care said get to the hospital becasue they can't help.  Almost three hours there to get a temporary cast so you can go to the orthopedic doc for a real cast.

I don't know what you could have done to get any pain relief from those fools, but I would have hobbled out and left them with their paperwork that needed to be signed.

Most people have no respect for pain because they have never had it that intensely.  We could only wish them a little dose of it for their enjoyment, and maybe they would have a tendency to listen to the patient.  If the first shot didn't work, then do another one idiot.  Get out the good stuff since he is already on all these pain meds.  Rocket science again I guess.

I can hardly believe you didn't raise your voice at them, which makes you better than most of us, or at least me.  I guess maybe you should have hit a mailbox on the way in and called an ambulance so they would think it was a car accident to gain a little belief in your pain.

Then when you get the run around from the neuro and ortho guys about who can give a shot and where ...  What happened to a real doctor and the telephone to get a guy some treatment ?

Dr.  Bozo's - Bimbo for office help just added the icing on the cake ... cupcake maybe, you can't even eat when in that level of pain, I know.

"I looked up at the ceiling and silently asked God to smite this asshole."  Good idea I think!

I can point L-1 out for you though.  The disk between that and L-2 fell down into the hole created by the fractured vertebrae for me.  Sleeping two hours a night is doing good.  And I'm guessing that is sitting somewhere with pillows stuffed around.  Remote, phone, pen, and paper all close at hand so that you don't need to move any more than necessary.  Then just passing out for a few minutes here and there due to exhaustion is the way I remember it.

Is this a test?  Do they want to know how much they can pile on before I snap?   Most likely, that's why they added the insurance snafu.

I also know the wife that has no concept routine.  Matter of fact, the lady from her church was diagnosed with Fibro at Mayo and they said the local docs don't know their butts from ....    Of course she can take a couple of Advil once in a while and she can do this, and that, and that, ....

Then at other times they ask "Are you alright?"   Well sure, I just love feeling and looking like crap.

I still don't know if I meant to take that much or not. I do know it was on seriously mucked up day in what has been a seriously mucked up fonth.

All you wanted was a little pain relief, and at times it seems the world thinks that is too much.  Not for it to be gone, but a little relief PLEASE.

Outlandish and uncalled for behavior on the part of the medical community in my opinion.

We are here for you Danny, just wish we could do something to help.

[Dan]

I want to thank you all.  It is rare to have a place where we can meet and share our feelings without fear of being laughed at or ridiculed.  Rare, hell.  I know there is nowhere else or to anyone else I'd dare open up. 

It's funny to think that a group like us, from all parts of the U.S., Canada, England, Australia, all over the world really,  have come together trying to find answers to questions that the so called experts can't answer.  And we all find comfort when we realize that we are not the only guy who is going through this 'syndrome' from Hell.  That all of us share symptoms that have us wondering and asking ourselves "Is this part of it?  Is it MS?  Is it a brain tumor?"  (I can hear Ahnold in Kindergarten Cop saying "IT'S NOT A TOOMAH!")  And almost always it comes down to "Do I have cancer?" 

Then we come on line and ask, "Does anyone else have audio hallucinations?" for instance.  I was amazed and maybe just a little disappointed to find out TNDadx4 and Paul were 'gifted' with this bizarre symptom, too.  I had never thought to ask about it, figuring the science fiction I've read all my life wasn't too far off, that there is a thin veil that seperates this 'world' from the 'alternate' and that veil is very thin in the hallway in my house!  I just haven't figured out how to step through!   

Ok.  Back at the ranch ... Ron, Todd, Henry, Jason, Thom,  you guys, man, what can I say?  Thank you.  I am hangin on.  they are NOT going to beat me.  God knows, sometimes it feels like it, but you know, tomorrow is always a new day.  Even when the hours run from one day right into the next with no break, when that sun comes up, I'm there to face it. 

Todd, geographically challenged?  I'm vertically challenged, too!  Horizontally, diagonally, let's throw in mentally, too!  When winter gets here (won't be long) I'm gonna be jealous of you down there in Texas, while the snowballs are hitting me in the ass up here in Illinois!  Thanks, Buddy. 

I have a small update.  I called the neuro yesterday afternoon.  I wanted to talk to him about his 'help' dropping the ball with the insurance.  When questioned by one of the front end people, I explained this was the 15th day of trying to get something done.  That I wanted to talk to him about the person who hadn't given the correct information to the insurance co. forcing a cancellation of the MRI and that person was going to be of tomorrow (Thursday) but felt sure she might be able to get something done on Friday ...  "The doctor is gone for the day but let me get his nurse ... "   Who never did come on the line but I got to leave a message, and she called me back this morning!  She had been on the phone with the insurance co., had made another MRI appt. for me at noon today, and was waiting for the ins. co. to call her back.   

I got into the shower and got everything ready to go, so all I had to do was pick my stuff up, lock the door behind me and drive to Springfield.  She hadn't called by 11:00 which was nearing the time I'd have to leave to make the noon appointment.  I had to lie and tell the phone answering person that I was returning the nurse's call before they let me talk to her!  Otherwise you have to leave a message for the nurse who might then return your call.   Or not.

When she came on the line I asked if she had tried to call, that I had been in the shower getting ready to go.  She told me that she hadn't heard from the insurance co, and had cancelled the appointment for the MRI.  She said that they would try again tomorrow.

So that's where it stands for now.  Hurt and wait.

Danny   
   

[Aleris]

Thanks for mentioning the audio hullicinations.  I have them all the time and wonder if I don't suffer from schizophrenia at times.  They are so real when they happen.  I have not even told my wife about this one, as it I do not want her to think I am crazy. 

I am praying for your situation and I feel awful that you have to go through this on top of dealing with the Fibro.  My wife has never gotten to the point of yours, and I am thankful, but there are many times she gets very frustrated. 

Since the hullicinations were mentioned maybe this other symptom others have as well.  Do you ever get the sensation in your head or other parts where it is like 220v hitting that one spot?  Hard to explain, but you can almost hear it and feel it travel to the spot it is going then you can hear it hit.  I actually hear a sound like someone smacking to pieces of wood together.  Then I jerk heavily where it ends.  It only happens maybe once or twice every couple of weeks, but it is the strangest thing, right next to the audio stuff.

You are in my prayers. 
Alan

[GrumpyHillbilly]

Even if the voices in my head aren't real they have some really good ideas!!

[Aleris]

Even better ones then I come with, at least that is what they tell me.

[ToJo/Todd]

9 out of ten voices say I should stay home today and clean my guns.

Who am I to go against the majority???

[dolphins3613]

if not for the voices i wouldnt have any friends 

[Aleris]

That is what I tell myself too.  I thought of naming them a few times, so at least that way I am not always just talking to myself.

[Dan]

Alan! 

From what you are describing, I'd suggest that you get to an emergency room as soon as possible, but I'm not an evil person.  :biggrin:

Just kidding about going to an ER, but I asked very nearly that exact question '220v travelling to that one spot'  'jerk heavily where it ends' in here a couple of months ago!!!  I think it was rwilli - Where is he? - that suggested it may be something called myoclonus.

I looked it up online and it's not quite like what they describe as being myoclonus, thank God.  I think what I asked was has anyone heard or felt something like electricity where it goes zzzzzzzzzzzZZZZZZZZZZZZZZZZZZZT! and then my whole body jerks like being snapped like a whip.  It seems to happen just as I get relaxed enough to cross the threshold from consciousness into sleep.  I think the thread may have been in the strange symptoms topic (weird symptoms),  and I also remember we called it "the jerks."

I've had the feeling that if it lasted longer than that split second, the pain would have been like getting kicked in the head by a horse.  Not that I've ever been kicked in the head by a horse, but I have been thrown and then danced on by one.   I gotta say, that hurt some.

Thank you for your prayers.  All you guys!  Which one of the Founding Fathers, Ben Franklin maybe, said "If we don't hang together, we will surely hang seperately."?  While we aren't fighting the British for the freedom of our entire nation, we are fighting something that may be more sinister in that it's an enemy that no one sees, very few acknowledge, and even fewer believe exists.  Only those of us it has personally attacked.  The thought of this possibly attacking our children or grandchildren is reason enough to make me get up everyday and continue the fight to be heard, to be believed. 

Hey Todd, I keep gettin' this feeling we must be brothers seperated at birth, cause even though they don't need it, I'm mopping that 12 gauge bore 'till it's shinin' like a new dime.  Checking magazine springs and followers, I may even check trigger pull on the rifle just for grins, you know?  Like the letter to the editor I wrote years ago in response to an article by one of our sissy Illinois senators calling for more gun control laws,  "Why do I like guns?  Maybe it's the fact that most guns are finely crafted machines.  A fantastic marriage of fit and finish between iron and wood, made to fit your hands and body.  It's a guy thing, Senator.  Too bad you will never know." 

Guys, I'm really tired, so I'm going to lay down, catch up to ya later!

Danny