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Looking to talk right now - pain levels consuming my body!
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Looking to talk right now - pain levels consuming my body!

Hi all,

I am just sitting here in so much pain. If you are online right now, please respond. I need a distraction. I am responding to some of the posts here to pass the time - but the pain is so bad and mind consuming. I'm here if you want to respond.... I need a way to tell my pain Dr to up my meds... I keep telling him I need help, but he doesn't seem to get it. I take Hydrocodone 7.5/325  - 2  3x daily ( for the last 5 years). Last appointment he also gave me a week's free sample of Lyrica  - but my insurance denied it after the week. It did help the nerve pain. Now I am on Neurontin for the um-teenth time. He knows it hasn't worked for me in the past but said I had to take it for at least 2 weeks. When I asked the nurse on the phone what other meds he might consider if this didn't work, the nurse told me there was nothing...  Nothing... I told her I just needed a little peace of mind knowing the neurontin would not work, my pain levels would go up and I had to endure 2 weeks of this... and her answer was ... nothing.

If you are there, I'm here... to talk.
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Avatar_f_tn
When you want to approach your PM about a raise in your meds, you might say something along the line of "I'm just not getting any relief at all from the meds that I'm on, what would you options do I have for increasing my meds since my pain is thru the roof?"  You also might try saying, "my meds just aren't working, I'm having to take pills all day long and nothing, do they make something for pain that lasts longer than these do? And is there something that you would suggest to go with (whatever he suggests) for the pain that will come in between?" In other words don't make it sound like you know much of the "lingo" to go with the meds.

Be sure that he understands how difficult it is for you to even function on a day to day basis. Literally, take a diary with you that outlines on an hour to hour basis your pain. If you don't have one, start one tonight. It will pay of in the long run. It will show him that you take your pain VERY seriously and that it is EXTREMELY bad. So bad that you are writing down every little ache and pain.

Sherry
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Oh my dear,

I'm so very sorry that you are suffering like this today!! Do you have a PM Dr. or are you just going to a PCP? (I'm sorry that I've forgotten the details.  :)  ) Do you mind reminding me what your pain is from?

Thanks...Sherry
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Avatar_f_tn
Sorry to hear you're having such a bad time.  (Me, too today.)  If your doctor isn't listening, would you consider trying to find a new pain doc?  (If you are seeing a pain doctor.  If not, I think that's probably where you should be.)  I have nerve pain, too.  It is so hard to get a handle on.  Even when I find something that works, it works for a couple of days or a week or two and then I'm back to square one.

It is very frustrating.  
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1322157_tn?1279660281
I see a pain Dr. I have had 2 surgeries on my L5-S1 in th past - I have seen multiple Dr's who say I need fusion to stabize my L5-S1 and also have 2 7mm heriations in my neck that also needs fusion. I am unable to have the surgeries right now because my husband is working out of state and Im a' mom to 3 boys. No family for thousands of miles. My last MRI reported 2 herniations in my neck, herniations L3 on down, massive scar tissue at L5-S1, epidural fibrosis encasing my S1, arachnoid scarring - nerves are clumped within the thecal sac... I am sure I forgot something - but that's enough, I suppose...

thanks for responding
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1322157_tn?1279660281
Well, I have thought about going to a new Dr - but I am terrified that I will be red flagged for Dr shopping... looking for a doc who will give me meds...

I have done everything they ask of me - even had 11 injections in less than a year, went through 'special' DBC (document based physical therapy), TENS, new MRI, went to neurosurgeon he wanted me to see.. who sent me to an ortho, - the last 4 Dr's I've seen out =side of PM have all fusions.. and then tell me it will stabilize everything but not takeall the painaway,... so why go through the fusions? I am worried more surgery will cause more scar tissue and make things worse...
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I can only speak for myself.  I had a fusion on my thumb joint.  Just made things worse.  I wasn't really promised anything, though he said MOST fusions take all the pain away.  But nothing has gone as usual with my course.


There must be a way to switch doctors without it being considered doctor shopping.  Maybe someone here has done it and can guide you.  I lucked out with my pain clinic for time around.  It is different than just switching doctors.  But you shouldn't have to stay with someone who isn't helping you, despite you following everything they suggest.
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1322157_tn?1279660281
That's what I am hoping - that someone will be able to help with my conversations with my dr.. or tell me what happens and how they switched dr's.. Man, i would hate to look in the yellow pages to switch dr's only to have to do everything all over agian or worse have him not prescribe the right meds either! Then I would be stuck.. because hopping from one pain dr to the next probably does not look good on your record!
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Avatar_f_tn
You need to be honest with him and tell him that you need something that will work long-term for you with BT Meds.

How long have you been going to this Dr.? You need to be sure that he understands the reasons why you won't be able to do the fusions right now. Unfortunately, some of the PM Dr.'s want yo to have ALL of the recommended procedures and surgeries or they won't give you the meds. Have you ever had him tell you anything like that? Do you have a Pain Management Contract that you signed? If you do you might read it and see what it says about procedures and surgeries.

Sherry

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If you want to switch, why not go and talk to your PCP and tell him what's going on and see what he says. After all, you will need the referral from him.  :)

Sherry
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1324871_tn?1288985306
I am so sorry you are hurting so badly .You have been through so much and not being able to have the meds that will control your pain  is just terrible .If I were you I would call around and find you another Dr .When you call tell them your situation .It's only Dr shopping if you are hiding that you are seeing more than one Dr.You know like seeing 2 for the same thing and getting meds from both .Tell them you are not happy with the way your pain is being controlled .If you are being up front thats not illegal. You have the option to seek treatment elsewhere if you are not happy .Thats your perogative.I do hope you are able to find someone to help you .Welcome to this forum .You will find a lot really nice people here who understand what you are going through and are so sympathetic because we all know what it's like to suffer in pain .If theres anything I can do to help I will be glad to .I feel so bad for you .Please continue posting to let us all know how you are doing .Take care and God bless Melissa
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1324871_tn?1288985306
Ditto on what namnam said .I didn't see that when I posted .Yes tell your pcp what's going on .They should be able to help you find someone or help you with other meds until you can get in to see a PM .I would say also if your pain becomes unbearable go to the ER .I pray that you can find some relief soon .Melissa
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1322157_tn?1279660281
I did sign a contract but it doesn't even mention procedures or surgeries. I originally went to see the PM because I did not want the fusion.  2 Dr's had told me last year that I needed fusion. This was less than a year after my last surgery - I was not mentally or physically prepared for another surgery. I have told my PM repeatedly that I can't do it right now, not only is the pain from my last surgery still fresh in my mind (2 years later - it was horrible, just horrible) - but I have explained my husband now works out of state and I have 3 kids at home. He seems to understand but after my last MRI a month ago - the nurse in his office called me and said the Dr wanted me to see a neurosurgeon. I first waited for my scheduled appointment with my PM to find out what the MRI read and to talk to him again about me not wanting surgery again. He said he was going to send me to a neuro who did not rush into surgery and is always willing to take things conservatively. I went to the neuro and he said I needed to fusions... The neuro then sent me to an Ortho for another opinion and I went yesterday and he said I need fusions (neck and lumbar).

I get it, they want to do the fusions - but the ortho said I could wait on the surgery as long as I could stand the pain....

My question is, why should I have to suffer in pain just because I do not want to go under the knife again? Even the ortho looked confused as to HOW they would proceed with the fusion since I have so much scar tissue already!

AND all the surgeons tell me that the fusion they want to do will not take care of ANY of my leg pain and will only help SOME of the back pain... the even said it MIGHT help the back pain 40%, 50%, etc... they do not know??!!

So, I will still be in pain management after the fusions....

Why can't I get the Dr to help the pain now? If he won't help me now, he certainly won't be helping me after the fusions... that might make things worse.


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1322157_tn?1279660281
Guys,

Instead of finding a new pain dr right now, is it possible I am not saying the right things to my Dr? Am I being foolish not to aske for a "LONG ACTING" pain med and to ask for something for "BREAKTHRU" pain? I am so afraid to be specific in my requests  - I read all the time about people saying "don't TELL your pain Dr what you want for pain" "Don't ask for specific medication"

Dang!! we get ourselves so worked up about being in pain management and fear what others will think....

what kind of relationship do you have with your Dr? I keep thinking I have got to be one of his lowest dosing patients!   Heck, I hear about people with Fibro who have tons of medication to keep their pain at bay! (actually, I know someone out of state who has fibro and she tells me all the meds she's on - it's ridiculous!!)

I shouldn't feel like this way, I know I have back problems and they have the MRI's to see it.
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Hi,

I have to feed my Granddaughter right now but I am going to be back on here in a little while, might be as long as an hour or 2 but I WILL be back on and address what you have asked.

Just bear with me....Sherry  :)
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82861_tn?1333457511
No way will vicodin touch the kind of pain you have.  It's obvious you really need an excellent neurosurgeon when you're ready to attempt the fusion.  I changed PM docs after my last failed surgery (abdominal scar tissue).  It was my surgeon who suggested it.  He knew the pain doc I was seeing absolutely would not prescribe anything stronger than vicodin, so he sent me to a different doc with what he called "a different philosophy" of pain management.
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1322157_tn?1279660281
Thanks for the advise... I have to get up the nerve to leave him... isn't that crazy?

I read my words, ... and it IS crazy I feel like this.

I feel better knowing that those of you out there think I am also under medicated... I only know one other person in PM and I thought maybe I was the norm - and everyone else here would be under medicated, too.
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Avatar_f_tn
When you want to approach your PM about a raise in your meds, you might say something along the line of "I'm just not getting any relief at all from the meds that I'm on, what would you options do I have for increasing my meds since my pain is thru the roof?"  You also might try saying, "my meds just aren't working, I'm having to take pills all day long and nothing, do they make something for pain that lasts longer than these do? And is there something that you would suggest to go with (whatever he suggests) for the pain that will come in between?" In other words don't make it sound like you know much of the "lingo" to go with the meds.

Be sure that he understands how difficult it is for you to even function on a day to day basis. Literally, take a diary with you that outlines on an hour to hour basis your pain. If you don't have one, start one tonight. It will pay of in the long run. It will show him that you take your pain VERY seriously and that it is EXTREMELY bad. So bad that you are writing down every little ache and pain.

Sherry
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1187071_tn?1279373298
I am so so sorry you are dealing with all this pain and you are right, this is not ok for you to be living like this. Like it has been said I would talk to your PCP if you have one and see what can be done and see if there is any other pain drs around.
Something that I did for my workers comp doctor is I wrote EVERYTHING down, when I took my meds when my pain got worse what I was doing when it got worse, when I ate, I also put down the 1 to 10 scale on how bad my pain was. I would write everything down for a few days just to give your dr a idea of what you go thru every single day. It really makes me mad that theses drs can sit there and make so much money but not treat us with the meds we need or up the meds that are helping. just tell him you are not able to enjoy your boys, your kids are the world to you and you can't enjoy the things that mean the most to you when you are in so much pain all the time. Something has to give here, it isnt right that we get treated like this.
Hang in there hun
Jamie
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1322157_tn?1279660281
Wow, thank you! Sherry, I really like your advice on what to say... People had told me before, to ask for .. such and such... and others would say, don't ask for anything specific! - your words are perfect. I will definitly ask him if they make something that lasts longer than these do...

and Jamie - a diary is a great idea! I have a list of the type of pain I have been suffering since I have so many different types of nerve pain all over legs  and I was afraid I would forget to tell him something - but I should keep track of my pain on a hour to hour basis...


Here I am trying so hard to look normal for the Dr's while in pain, they probably don't understand the pain I am in. While I was at my last appointment, people sat in the waiting room making noises from their pain... I try to do the opposite. I don't want people to constantly ask me whats wrong, how's your back doing, you look tired, why are you walking like that.....   I go to great lengths so people won't know what I suffer.

I don't want anyone to know how bad it is... maybe because I don't want them to feel sorry for me. I want to be just like everyone else.. all the other mom's... all my friends. I am tired of being the one who 'gasps' when the sharp pains hit...and I have to grab onto something..

As I am writing this, I realize that I try hide my pain in front of others... and it's so bad now, I can't.

I definitly will talk with my Dr.  - my next appointment isn't until next month... but, I will. Maybe he will be surprised when he reads my journal and what my day is really like.

Thanks guys... all of you for taking the time to talk to me today. What a great help you all have been... really!!!

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I'm so glad that we were able to help you, even if it's just a little. You know that we are here for you anytime you need us!!

You asked earlier about the type of relationship we had with our PM Dr.'s. I have the GREATEST Dr. in the world. I'd NEVER had one before and all that I had for my pain until last January (6 months ago) was Lortab 7.5/500. I was on them from 2003 until January 2010. I took 4 a day and always believed that I would have to live with the intense pain that I had. If I hadn't found my PM Dr. when I did I would be with in 6 months of being in a wheelchair permanently now. I was using a walker half of the time. I've been using a cane to walk since 2000. I will be 64years old next month.

When I walked into his office he took one look at me and asked me what I wanted out of Pain Management. He had all of my medical history from 2003 in front of him that I had brought with me from Tennessee when we moved last summer to AZ. I told him that I wanted something to make me quit hurting so much and I really would love something that would make it possible to not have to take so many pills. (I take 16 different meds a day for heart, BP, Arthritis, Cholest. , etc NOT counting my Lortab's). He started listing ALL or these "Big Dog" meds and one of them was the Fenatnyl Patch and I jumped at that one because I knew that would get rid of several of my pills.Now keep in mind that my condition definitely warrants the Patch and I should have been on it several years ago but I didn't know that I could get anything except the Norco. But the main thing is that he made sure that I wasn't going to hurt anymore than I had to. I thought that this is the way that ALL PM Dr.'s treat their patients and I was SHOCKED when I found this web site and started hearing what REALLY happens and I realized how VERY fortunate I was to have found these wonderful set of Dr.'s that I have. From my PCP who started the ball rolling for me by sending me to these fantastic specialists. So far he has sent me to 5 Specialists and the Neurologist that he sent me to is the one that made sure that I went to my PM. He specifically sent me to him (no one else in his practice and told me ONLY him) because he knows him personally and knew that I needed someone that would TREAT MY PAIN!!   And YES, I know I'm VERY fortunate and I thank God every night that I have found him. I also, pray that everyone will find one as great as mine that will take care of them.

I hope and Pray that you will too!!! So hang in there and your time WILL come...Sherry
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655875_tn?1295698707
I hear ya.  Right now I'm in so much pain I wish I could crawl under a rock.  Nana is exactly right on how to approach your doctor.  There is no better way.  If he/she doesn't listen to you, leave.  You do not needed to be treated this way.  My first pain doc way under treated my pain and I would be in his office telling him my pain was unbearable.  He simply told me if it was that bad, go to the ER.  He was a pain doc too and suppose to treat my pain.  I had moderate spinal cord compression in my neck and was told to deal with it and accept it.  I was allowed 4 pain pills a day for over a year, so your in the same boat I was.  I currently have 2 disc herniations in my neck also.  The last surgeon didn't do the job correctly and only fixed one.  

I pray and hope you can get better pain management soon.  I personally leave that office asap and find another doc.  You can also interview other doctors while seeing this one, so you don't run out of the little medication you are offered.
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1322157_tn?1279660281
Is it really ok to do that?  Leave your PM because you are not happy with the way he is treating your pain? I need some starch in my backbone.... I am so afraid from reading some of other people's stories here... that I just can't get up the nerve to say anything. When I have told them before I am not getting enough pain relief, he offered an injection. I had 11 injections in less than a year! I was too afraid to say, no....

The last time I asked isn't there something he could do - I old him I couldn't take it anymore, he offered Lyrica, my insurance company denied it... Then they told me I had to take the neurontin and 3 days later (today) I wake up with Angelina Jolie LIPS! My bottom lip was huge!! So I am back to where I was.... they never called anything in for me today.. and probably won't tomorrow.

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1322157_tn?1279660281
and also want to say I am so very, very, sorry you are in such pain, too.

Stay stong and this day shall pass... I tell myself that all the time...

I pray for your tomorrow to be a better, pain-less day!

I wrote pain-less since we all know there is no such thing as a painless day... just days with less pain.

:)
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655875_tn?1295698707
Yes, you bet it okay to leave the pain doctor.  You hired him to do a good job.  If he doesn't do his job, then you need to fire him.  If you are under a contract it's best to write a letter of intent to discontinue the contract.  Just to be on the safe side once you've found the right doctor for you.  Make sure when you do this, that you have nothing that needs to be faxed from your doctors office.  

I was seeing a surgeon to see if he would do an additional surgery to fix the two discs that are herniated in my neck.  The surgeon wanted to look at some MRI and xrays and they had faxed over a request for them.  I tried to tell this surgeons office not to do this, but the message was not passed on.  With in 20 minutes of the faxed reports there was a message on my phone from the pm's nurse stating that he no longer can see me.  I had a funny feeling that would happen due to the poor care I was recieveing from the first pm.  This was 2 days before my med refill too.  Even though he broke my contract, I wrote my letter of intent to be on the safe side.  My husband had been begging me to find someone else too.  He went to an appointment of mine and the pm doctor actually raised his voice at me because the injection did not go his way.  He raised his voice on more then one occasion.  

Let me tell you, leaving that doctor was the best thing that ever happened.  I'm at a wonderful place now and the place I'm at now actually cares if we are in pain.  They treat me with much better pain medications even though it feels like they don't work at times.  I'm actually on a long acting med 3 times a day with 5 break through pills a day.

I had 14 injections in 1.5 years, so we are very similar to what we've gone though.  I've been through PT twice and the injections/PT made my pain unberable for weeks at a time.  I'm not forced to do any more procedures if I don't want to do them.  All I have to say is no thank you and they leave it at that.

I hope your pain lessons as well.  I can't imagine having back and neck problems.  Having the neck problems is enough with the migraines.  I'm having a repeat MRI next week to see where the herniations are at.  I'm now working with my pain clinic in finding a surgeon to see what the next best thing to do is.

I know it's difficult to take a leap of faith and venture out in new places.  It's so scarey and stressful.  I hope you find a doctor who is caring and not afraid to treat your pain fairly.
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1301089_tn?1290670171
I've left a pain doctor.  I told him I hated the patch and I was turning into a zombie but was still in too much pain.  His solution was to up the patch level.  So I pulled myself off the fentanyl and went to see my primary care doctor.  Told him the whole story.  His staff found a doctor who treated abdominal pain.  A neighbor had also recommended this same person.  

The doctor I see now is great.  She actually treats the source of the pain and I'm not a zombie!!  I'd rather have some pain and not be a zombie!

So if you don't like your doctor, write that letter.  Get your primary care doc to refer you to another pain specialist.  And Good Luck!!

Sara
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