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| | From:  LunarKalia (Original Message) | Sent: 10/30/2008 3:06 PM |
hello everyone. i am new to the board as of yesterday adn i am in search of COMFORT...support...maybe advice? i have lived with various sources of chronic pain for thirty years....mostly spine related...have had lots of surgeries for musculoskeletal situations....it's a loooong story. at the moment i have an internist who begrudgingly writes my scripts for Xodol (hydrocodone and acetominophen) and she doesn't WANT to write them because in HER mind, i don't NEED the meds. i've been with her three years; it turned out that she never even received half of my medical record, she had NO KNOWLEDGE of spinal stenosis, DDD,osteoporosis, etc. she has asked me to try water therapy, i complied....no great improvement; she asked me to try acupuncture, i complied...very relaxing but no change in my pain in my spine. and yet this woman maintains that i "don't need" what i am taking. my rheumatologist disgrees. she sees that i have taperd down by half over the past year and thinks taht is "all that we can ask of you"
well, i had a nasty bicycle accident on sept. 29.....problems have unfolded over the past month..at first i was most worried that i had fractured a knee cap, maybe ribs....so a week after the accident i had xrays...no fractures...but contusions, yes....chest wall contusion, knee contusions.....and then i started to feel like my hip was damaged...badly...and then the lower spine kicked in.....very painful, very debilitating........i called the internist office and asked if she would authorize an xray of the lower spine, to see if the coccyx was fractured....no fracture....but the pain is real...and it is pain on TOP of pain that i live with all the time.
is it MY FAULT that my central nervous system processes pain messages the way it does? well i don't thinnk so!
okay...the CRISIS....this internist refuses to authorize the early refill of my painmeds. i left a very thorough and honest voicemail at her office yesterday...wanted to let her know that yes, i have been taking more than the Rx allows for due to the pain from accident and now the new difficulties that the chiropractic '" spinal decompression" treatments are creating!!!! it's awful...i am even cancelling the third treatment tomorrow....i just don't see what good is coming grom them.....anyway, i am not trying to hide something from the doctor.....but i got a call back from the nurse at her office....she was a witch! must be her halloween costume! just said, very flatly, "well, WE think you should have MUCH more of your script left than you do"....i tried to no avail to re explain all that i had said in my phone m essage. NO ONE CARES. so i am going to run out by saturday and then what do i do? am i a criminal for taking more because of pain elevation? what should i have done, called the doctor and made an appt. to see her about the extra pain?
she refuses to authorize the early refill, despite the fact that ihave NEVER had to do this before.
what i WANT to do right now is walk in there and demand my medical records.....then worry about finding another doctor tomorrow.
my gut feeling is that this is a doctor who lacks compassion...and she is scared of the DEA...that's all. and now i have to suffer. i am guessing i will have to go to the ER when i am in full-blown withdrawal. i could DIE from going into withdrawal like this. doesn't she know that?
the end part of my phone message to them must have been missed: i said that i am now back at the prescribed dose...as of yesterday......they couldn't care less. now i am marked for life as a drug addict????? i am tired of crying. i don't know what to do. any advice? and thank you. |
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My name is CJ and it's my husband that's on constant pain meds so I understand your situation. First, you MUST find a doctor that understands what you are going through. I'm in Calgary, Alberta so not close enough to help you on a personal level but seriously, find a doctor that understands quality of life is an issue here and if being on pain meds is it, then he'll give it to you. My husband has been on pain meds for 4 years, on many of them and our doctor will give them to him (monitored to make sure there is no overdose or mixups) and he will perscribe more as needed, safely but as needed. It's to the point where we show up, we talk for 5 minutes and there will be a refill, increase or change, questions as needed. He is NOT marked as an addict. And let me tell you, I can go through a LIST of narcotics he's been on (and still is on.)
You are not an addict, don't let your doctor say anything different, once you have what you need, find one who is sympathetic to your situation and will understand. Make sure they know you are not taking them as a chemical dependency but as a physical quality of life deal because of your pain REAL pain, not imaginary pain. Explain your pain and what's been diagnosed, tell them to rediagnose you if they have too but make sure you get what you need.
Sorry, I tend to ramble, I hope you get something helpful out of what I just said, good luck.
C.J. |
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| | | From: CyndyK2 | Sent: 10/30/2008 5:33 PM |
Hello, LunarKalia, and welcome to the family! : ) First of all, why are you getting pain meds from an internist and not from your more-sympathetic rheumatologist?? I take it you have a "pain contract" with this internist that restricts you from going to another doctor for pain meds? Ok, time to fire her ass and tear up that contract! Get your records from her office manager and find yourself a new pain management doctor. If your rheumatologist is so much more sympathetic to your situation, why not go to him?? Or at least ask him for a recommendation. Rochester isn't exactly the boondocks, although I realize it's not New York City. You should have told your doctor immediately when you were injured; waiting a month and taking extra meds doesn't look good on paper; you have to realize that. You have to understand that YOU aren't the one that has to deal with the DEA; the doctors and the pharmacists are the ones that stand to lose their licenses, not you. It's a very real fear for them, especially in the Northeastern states, and you need to work WITH your doctor so he or she can work with YOU. Incidentally, if you're getting chiropractic adjustments for spinal stenosis, you're risking paralysis; I'd stop that immediately!
Cyndy
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| | | From: Jen, PT | Sent: 10/30/2008 6:24 PM |
Spinal Decompression is just a fancy name for traction. It is used all of the time in physical therapy for those diagnosed with spinal stenosis, and typically quite effective (temporarily). You can't fix stenosis, but you can learn certain positions and stretches that will help open up the spaces in the spine. As for getting your medical records, you should be able to get them without difficulty...they are yours! I just go to the medical secretary's office to get whatever I need, no questions asked. I agree with Cyndy, that you should have let your doctor know as soon as you started taking more than prescribed from your prescription. Nothing you can do about that now, but maybe helpful for the future. As for leaving the doctor, you know what you need to do to get the loving compasssionate care you deserve. Stay strong in your search for a new physician...one that is compassionate, understanding, and will help you manage your pain appropriately. There's a wealth of information in the pale blue column to the left, so take a look when you get a chance! Using a pain diary can be helpful, to show the doctor that you are keeping track of your pain levels, and how the medications are affecting you. Also, if you leave this internist, you may be able to use your rheumatologist to get the medications you need. I had to sign a contract that I would only get my pain medications from my primary care physician, and that I would take them only as prescribed, and to contact her immediately if my pain increased and required increased dosage of medication. I had to agree to only get my refills in person, from only one pharmacy. But in the whole scheme of things, this is worth it. They have a true need to protect themselves, and I respect that. You may also want to look into joining a pain management clinic, which is a multi-member team approach to managing pain. I did this for one year. It involved a pain management physician, psychologist, physical therapist, as well as alternative medicine services such as acupuncture. There were classes to attend which discussed managing pain, staying on top of the pain curve, managing depression, etc. I found it overall very helpful! Again, welcome to the group! You can read more about me under "meet Jen". |
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| | | From: Dan | Sent: 10/31/2008 1:59 AM |
Hi, Kalia. I welcomed you under another thread.  Sometimes I get so confused.... LOL Healing hugs and lots of love, Dan |
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Hi Kalia and welcome! I'm so sorry you are having problems getting pain meds from your doctor. But, guess things went wrong when you had your accident....and now, they don't want to give you more narcotics. Is it possible for you to talk to the doctor, rather than the nurse??? You don't know that she is giving the doctor your messages; so that's the first priority. Make sure he knows about what's going on. And tell him exactly what you did...from the day of the accident, with taking more pain meds. We're not going to beat you over the head about not telling him about taking more meds though....it's not going to help you with the pain meds anyway....lol. I've been going to pain management for over 10 years now. I did not have to sign a 'contract' at first, but have about 4-5 years ago. Things changed then....most pain management doctors all got their patients to sign these contracts..and there is nothing wrong with them. They only want to protect themselves (the doctors) and that's fine with me. It's also protecting me, as the patient. They don't want you to get pain meds from any other doctor, just the pain management doctor. It keeps track of what you take, how many, what it is, etc. BUT it doesn't have to be a pain management doctor that does this; it could be your rheumy, your GP, etc....although some of those doctors do not have you sign the contract. I feel that pain management docs have more insight into what helps, feel more comfortable giving higher doses of narcotics, will do procedures IF they feel they might help the pain. Sure, there are some of them who will not prescribe narcotics only...they want to do the procedures...they make more $$$ on that! My PM doc has been ONLY giving me narcotics for years...he told me on the first visit that there was little else he could offer me right now other than giving me narcotics....I had been through it all before, and did not get any major relief with procedures. He understood that! There MAY be some new procedures that might help, down the road, but, right now, I only take pain meds...and that's fine with me. Maybe you can talk to your rheumy about becoming your primary pain doctor. See if he will. Some won't...they don't want the responsiblity of that...and will tell you to find someone else. I wish everyone could find a PM doc like I have....he's awesome! But hang in there...and hope by talking to your doctor, he will understand your situation with the accident, and help you out this time. Ask him what you should do IF this happens again...and I pray it doesn't...for your sake! Nobody wants more pain in their lives; that's for sure! Hope you feel better soon...and hope you get to talk to your doctor; maybe even go in to see him and help him to understand. Let us know how things go with this. I pray you get through the bad days! Hugz, Dee P.S. You can read about me under 'meet the managers', under "Dee", if you wish. |
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thank you so much for responding. no i didn't wait a month to tell the internist...matter of fact, i had the accident in cape cod, we drove home the next day, and the day after THAT i called the internist because i didn't know what to do and i was told oh, call the specialists...the orthopaedic doc for the kneecap crash landing, the shoulder surgeon for the shoulder involvement....so she has known about this from the beginning. she also knows i went to the ER for xrays when i was afraid i had broken ribs....which i didn't....so she knows....also i had to get her to call in for a coccyx xray a week later because it sure felt like that was fractured and i had to know if it was before i started treatments with the chiropractor. so as you can see, she has known everything.
and i AM very sympathetic to the DEA situation; and i have addressed that with her twice...she is not willign to even say yes, i am concerned for MYSELF...she won't talk about it.
re: stenosis and chiropractic...i know; dicey. but at least i've told him no he cannot touch my cervical spine. he has been addressing the coccyx/lumbar region, that's all....to try to get things feeling better. that is where the bulk of the pain after the bike accident is. but i just decided this m orning i am not even going back for another sacral area treatment; i called yesterday to tell them no to another spinal decompression treatment. i have had two this week and it is so painful while it's going on, the stretching of the spine, that i cried. then he lectures me about my brain ...tells me it's me THINKING i have pain, ANTICIPATING it, that CREATES it. yah, i think i may be done there.
and now the search for an understanding doctor begins.
do you know i have even been told that the pain i have IS NOT FROM DEGENERATION OF THE SPINE because doctors could get a room ful of people all of whom have MRIs that look like mine, and half the people will claim pain like i do, and the other half wont'...THEREFORE....yeah, i've been told that therefore MY PAIN ISN'T REAL because THE OTHER HALF of the people DON'T have pain! voila! great scientific study, don't you think?
oh i am so disillusioned. |
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| thank you jen. actually i have been to the local pain clinic. they were not helpful. i don't have time to get into it here, but will talk about that later. you know, i upped my dose on the pain meds after hand surgery last march, and i happened to have an appt. scheduled with the internist then and when i told her she didn't bat an eyelash..i.t was no biggee. so i figured it was no biggee when i did it this time. she has never denied an early refill by a couple days when i've had to take more than what is prescribed, never. and by the way, i was denied access to my medical record at her office yesterday. i decided to write a nice calm letter to her, to m ake sure she understands what i intended to say in the voice message on the phone, the message that was interpreted by her nasty nurse. i went to the office, asked that it be put on her desk, no problem, then asked if i could please see my records. well, the room went silent. a secretary jumped up and said she would "look into that" for me. she came out a few minutes later, called me into the h allway and said the doctor said no, she isnt' comfortable with you seeing them, after all, THEY ARE HER RECORDS, NOT YOURS. wow. i decided to just remain calm and pleasant. i left. i was told my chart was on top of the doctor's desk and that she would definitely be callng me. there has been no call. at this point, even with breaking pills in half to avoid full blown withdrawal, i will not make it until next week and will undoubtedly end up in the emergency room......isnt' that great? then i can be stared at as a druggie....i know that is what will happen. i am so upset about this.....and i just dont' know what else i can do. |
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hi cyndy.....in the very beginning , many years ago, i DID used to get my pain medication from the rheumatologist. i see her twice a year now...she isn't really treating me for anything, just watching and waiting for actual rheumatoid arthritis to rear its head....she believes it will. she also "enjoys", ha, studying me with my inflammatory diseases and pain conditions....anyway, i can't imagine calling her office and asking if she will prescribe my meds. do you really think i can do that? i'll have to consider it.....wehn i saw her last time and told her i HAVE tapered down to half of what i was taking she said she thinks that is the best that can be expected, given "my situation".
ay yi yi. what i mess i seem to be in. i jsut wish, more than anything, that my internist could level with me; i wish she could just YELL at me and say yes, by god, i am worried about my license!!!! i know this is the case and i do everyting in my power to always let her know i respect her concern.....so if i made a mistake in not calling her to tell her how bad my pain was and to let her know that i had upped the dosage, that is MY mistake and i apologize (i included that in the letter i left at her office yesterday...) \
but the bottom line is, i am now sitting here with very little medication and a week of days looking back at me where there won't BE any medication. i just feel so defeated knowing that my doctor doesn't even believe i have the pain i say i have. |
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hi there natzo....amazing i guess that i didn't think it would be a big deal to make the decision on my own to take m ore pain medication. boy do i feel stupid now. and you know, there has never been any mention of the pain contract: i have always only taken prescriptions from one doctor, her, and had the script filled at the same place, always. so it's never been an issue.
i did go to a pain clinic.....i've had nerve root injections, i've had a spine surgeon suggest fusion and i refused.....i've done the therapy and the biofeedback, AND been scrutinized at the clinic as a druggie too...it's just in their faces. i've started wondering if maybe i should show up to doctor apts. right out of bed, not comb my hair, no makeup, just crawl in there and show them how i REALLY feel....maybe because i try to make the best of a rotten spine and try to not bring others down by complaining ..maybe i am making things worse for myself in their eyes? who the heck knows? not me.
i am willing to do a pain contract....and i hadn't even thought of asking the rheumy doc to be my pain med prescriber.
i wrote a very concise, kind letter to my internist yesterday and delivered it to her office. i watched as it was put on her desk so i know it was at least delivered. i apologized for not calling to let her know i was upping the dose; i just figured since she's been okay wiht that in the past, she would be okay with it now.
there has been and IS the issue of tolerization on the med i take now; but when i have asked her about a longer acting med, she wont' go there. it's a long story...i wont' get into it all now..i'll spare you!
i have decided the chiropractic treatments are not good for me; i cancelled the third traction session and am supposed to have a regular manipulation today in place of it, but i just dont' feel like it's a good idea. and he, the chiropractor, is another whole ball of wax! he just thinks i "create" the pain by "giving it energy"....oh my god, get me away from these people!!!!
all i know is, i am trying. trying to communicate, trying to look after my own best interests, trying to make sure i am understood. and now i have a whole week staring me in the face where there are not going to be pain meds....no matter how much i cut down on what is left. and my doctor doesnt' care. |
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| | | From: CyndyK2 | Sent: 10/31/2008 4:09 PM |
Your doctor may not feel comfortable handing your records to you personally, but she can't keep them if you switch doctors. If you decide to go to another doctor for your care, contact her office and tell them to send your records to your new doctor. Period. Frankly, I don't know why an internist is dealing with spinal pain in the first place; that's REALLY out of her realm of expertise, and considering she told you to go see specialists for your knee and shoulder, I'm really surprised that she continues to "treat" you for chronic pain in your spine. As I said before, I would fire her ass and go with the rheumatologist for pain management, especially if there's nobody better in your area. Or maybe the rheumatologist can recommend an anesthesiologist or physiatrist (pain management) you can try. But I would definitely leave that internist immediately. And I don't know what meds you're on, but breaking them in half, if they're time-release medication, can make you very sick or even kill you! Be VERY careful when it comes to breaking pills!!
Cyndy
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i am so grateful for your help cyndy. i am taking Xodol, a higher dose of hydrocodone and lower dose of acetominophen. do you think it's dangerous to split them? i hadn't heard that but am certainly open to new information. isn't this just pathetic? i can't believe i am in thisi situation. but at this point my guess is that the internist is trying to get me to leave her practice. she must be. why else would she be so reluctant? so punishing? it makes no sense. i get it that yes, i most likely should have called her to discuss my decision to take more of the medication due to increased pain; i have even apologized for making that mistake in my letter to her. but to leave me hanging like this.....it is just ridiculous...not to mention VERY uncaring....my sister just emailed me links to how to file a complaint with the office for civil rights under the health information privacy act. i am going to do it. not only do i have to manage chronic pain, now i have to do this......ay yi yi! but thank you so much for taking the time to "talk". it is so much appreciated.
unfortunately, i know that if i call my rheumatologist her nurse will yell at me! oh she is SO protective of her doctor! i adore my rheumy....i guess i can write another letter and deliver it today! lol but then there's the probability that she will contact my internist and who knows, maybe they will "stick together"....i know, i am now getting officially PARANOID! yikes! i better go calm down..... |
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| | | From: Dan | Sent: 11/1/2008 1:45 AM |
As near as I can tell, Kalia, there's no problem with cutting Xodol in half. It's just hydrocodone (synthetic codiene) and Tylenol. It's a tablet right? Generally speaking, if it's not a time release medication or a capsule, you can halve most medications. However, it's better to check with your doctor or pharmacist first. I mean, what do I know? Healing hugs and lots of love, Dan |
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| | | From: CyndyK2 | Sent: 11/1/2008 6:04 AM |
As near as I can tell, Dan's right and Xodol isn't a time-release medication. The main thing you have to worry about is that it contains Acetaminophen (Tylenol), which is also found in many over the counter preparations, and it's very easy to go over the recommended daily allowance of it if you're not careful. I'm going to put a link here to a site about Xodol for you to read (unfortunately I can't make it clickable because I have a Mac, not Windows computer), so you'll have to copy and paste it into your address bar, but it will work there); make sure you're not taking too much Tylenol in other preparations like cold or allergy medications, ok?
Cyndy
http://www.drugs.com/mtm/xodol.html
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thanks again cyndy and dan. and cyndy, yes, i AM careful to not take anything else with acetominophen in it...very careful. i am sitting here feeling the pain mount in my spine. i just can't believe that my doctor would "fire me" over my decision to treat the very real "extra pain" that has been part of my life after the bicycle accident. forgive me if i am repeating myself here, but the accident was on 9/28....we decided to come home because there was NOTHING we could do with me unable to walk....so we were home mid afternoon on 9/29 (i may be off on the dates, but we were home on that weds.)i immediately called this doctors office. i had landed on my knees and left shoulder and i was in very bad pain....plus the growing pain in the lower spine. i was told immediately to
"just go to your orthopedic doctors, dont' come here"...so the internist didn't want to see me or treat me. fine. i took myself to the emergency room the following sunday becasue i was convinced that i had a broken rib or two; the shoulder pain had morphed into deep chest pain...the lower spine pain was growing too.
i live with a torn rotator cuff in my shoulder that i fell on...i've had the cuff repaired twice in the opposite shoulder! so i figured i had REALLY torn the cuff this time...but then it morphed into the chest thing. anyway, xrays at the ER showed no fractures or bone breakage in the knees, and the conclusion was major chest contusion.....no xray of the coccyx because for some ridiculous reason, that ER doc decided he didn't think i "had enough pain " when he touched the area. okee dokee!\
again i called my internist office: coccyx is hurting horribly...can i have an appt. to see her? NO....go to the hospital and get it xrayed. again, she wouldn't see me. maybe i am just getting goofy over all of this, but it just seems odd that i kept trying to see her, to express to her how much pain i was in in addition to that which always plagues me...but no,she didn't want to see me. so i went for the xray....coccyx isn['t fractured, but the xray did show up the moderate/severe degenerative changes in my lumbar spine, just as i knew it would. the cervical spine is even worse...
so. i guess i should give your eyes a break and stop here eh? lol it's just so amazing to know that i can type my story and hear from others "i know...i understand". i have two "real life" friends who are "trying to help" at the moment: unfortunately one of them is saying "my GOD, you need psychiatric care!" and the other keeps recommending all the books that are out there about "pain management without drugs". these are, granted, two relatively new friends: they really don't know my whole history and how m any of those books i HAVE read!
okay. i'll stop now. thank you , thank you for reading, for being out there somewhere! i hope you all are having NO PAIN today! |
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I forgot to mention that I had fractured my coccyx....it was fractured in 3 pieces..one of which was piercing the rectum. So I had to have surgery on it, after years of trying to live with it....and get injections in it...OUCHIE. Man, that hurt!!! Anyway, that was one of the most difficult surgeries I had....it was SO hard to try to sit....tried the 'donut' foam pillow, but it still hurt! The only way I could 'sit' was not to actually sit, but rather to 'lounge' on my side to get comfortable. I even ate that way for months! It took a very long time (close to a year) to get a 'callous' on where the coccyx was ....before it would not hurt as much. It was tough even trying to go to the potty, too... But, eventually, it got 'better'...so that I could sit once again....finally!!! But, not a nice surgery, that's for sure. I've also had four rotator cuff surgeries, two on each shoulder. I had the one, then the shoulder would heal...up to a point, then I started going 'downhill' again...and they found out that I had torn the cuff again...so surgery. The surgery is very painful, as you know...but once I finally healed, I was fine. It took a long time...lots of PT, of course...but now I'm doing welll with it. It sure beats what I was living with when I first tore it though. I had tried PT, but it just made things worse with the shoulder. I'm sorry your internist is giving you all this heat about the pain meds; and everything else, too. The way she treated you after the accident is deplorable! She should have treated you a lot better...heck, treated you, period! Yep, know about people who tell us to "read a book", yeah, right....LOL. But I hope you can find another doctor....or at least get some help from your rheumy....if there is no other doctor that wants to take care of you. I know my rheumy was one of the first doctors that would even give me narcotics for my pain....until I found my great pain doc. The reason I went to the pain doc was my neurosurgeon recommended him to me (because of the problems with my lumbar/cervical areas....had numerous surgeries on them) and he felt I would get treated better by pain management. And I was! Most other doctors are so afraid of prescribing high doses of narcotics. But we also hear lots of stories (horror stories) about some pain management programs....some refuse to prescribe any type of narcotic at all...only want to do 'procedures'....period. If they don't work, they don't want to treat you at all. I hope you find someone who will help you with your pain. And screw the doctor who says that 'half the people will scream with pain' the 'other half will say it's 'not bad'....yeah, right!!! They don't think they are exactly the same cases, do they?? Everyone is different! But just try to get it through their thick skulls....lol. Oh well, it's been a fight for years...and will probably continue to be a 'fight' for everyone who has had chronic pain. Sad, isn't it...in this day and age?? Take care...and hope you find someone new....who cares!!! Hugz, Dee |
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