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Old 07-30-2010, 10:57 AM   #1
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About to just give up. Need some advice.

I have had chronic pain for nearly 8 years now, I guess it will be. I have also suffered from depression my entire life (major depressive disorder), though that has gotten much, much worse during these last 8 years.

I'll apologize in advance here for such a long post...

My original injury was a piece of my vertebra in the S5-L1 (I believe it was that area, perhaps S1-L5, but I know it was one of the two...) area at the bottom of my spine broke off in an accident and lodged into the nerve bundle down there. I underwent surgery to have the piece of bone removed.
After the surgery, the numbness in my left leg and foot went away for the most part and the sharp, stabbing pain wasn't constant like it was before. I could stand straight up again, walk normal, sleep better, etc.

Well, it wasn't maybe 6 months after that that the pain started coming back, sometimes pretty intensely, with the same sharp and stabbing sensations, pain shooting down my left leg like before, but not as bad this time. Basically it hurt but didn't feel like there was a bone lodged into my nerves.

I went back to my GP and he put me on Ultracet or Tramadol, I forget which, though I am thinking that I was on both. A few more months passed and the pain began to get worse, and the prescription he had given me also was not working nearly as well.
So he prescribed Vicodin for me, which he gave me a max of 20 a month and was very reluctant to even give that many. As time went by it got to the point that 20 a month simply wasn't cutting it. I needed a dose for the morning and one for the evening. The pain was ruining my life again, and all I really wanted was to live like I used to, normally, to work and raise my family. That's all I want to this day, tbh.
My GP bumped my up to 2 pills a day, max, and stressed that that would be the end of it, he was at his limit.
I guess after a year, the Vicodin (5mg) began to diminish in it's effectiveness just as the Tramadol did and my pain levels began to get worse as well, often lasting all day and night.
He would later bump me up to Oxycodone, again reluctantly, but suggested that I see a pain specialist for further treatment.

I suppose I should add here that I have always had a high tolerance when it came to meds, alcohol... anything throughout my life. Not sure why, but one doctor pointed to my high metabolism, height and weight (5'10", 200lbs) as the reason that my body needed more than, say, my grandfather - who would take half a 5mg Vicodin and pass out at the dinner table.
I started out with a couple of the 5mg pills and it just didn't cut it, so he put me on the 7.5mg pills and had me taking 2 of those, and that worked a lot better. No high or buzz, just relief.

Anyway, I went to see the pain specialist.
She diagnosed me with scar tissue from my surgery, a dry disc (whatever that is), degenerative disc disease (who doesn't have that, right?), minor scoliosis, arthritis, a herniated disc and one other condition that I can't seem to remember. By this time my neck was beginning to give me fits also, after a snowmobile accident where I jammed it really bad in an awkward position. It would just ache really bad for days on end and led to headaches that were pretty intense.
So she put me on Oxycontin, 40mg twice a day. She told me every time she saw me that I was on an extremely high dose of medication and I shouldn't be taking it until I get buzzed, or "high", but that the point was to take it for the pain. I always hated it when she said that because it made me feel like a junkie, like I was doing something wrong, when in fact I wasn't. I got no buzz or high from the medication by that time. I just shrugged it off and smiled through it though and agreed with everything she suggested. I knew by this time through experience with doctors and my back issues that the patient is at the complete mercy of the doctor, and the doctor is the only thing between living a normal, pain free (kinda) life and having nothing at all for the pain and living in misery.
She also prescribed me 20 short acting Oxycodone per month for breakthrough pain as needed.
My problem began when I had an impacted wisdom tooth and woke up one morning in extreme pain. I was literally in tears. Never felt anything like it. I can liken it to post-op surgery and the pain I was in lying in recovery, only in the back of my mouth rather than in my back.
I took my breakthrough meds, all of them, over the course of 5 days. I called in and told her what was going on, and that I used the breakthrough meds up dealing with my impacted wisdom tooth (which a week later I had surgically removed... ouch) and she was simply unforgiving. She said she had an impacted wisdom tooth once and it didn't warrant taking all that medication in 5 days.
She cut me off completely just a few days before my long acting medication was due for refill. I went through horrible withdrawals and insufferable back pain to go along with the tooth issue. I contemplated suicide. It was all just too much combined, and I nearly went through with it. But, luckily, my GP was kind enough to prescribe me just enough meds to wean off the dose that I was on, but over the course of 4 weeks had took me down to zero. He wanted me off the narcotics all together.
So... I did. I went back to physical therapy and began taking OTC pain relievers for the better part of 3 months. My life quickly unraveled, completely, from the pain and he releneted and sent me to a new pain specialist.
This new woman was from India, originally, and rather than talk about my condition, she instead lectured me for close to 40 minutes (I watched the clock...) about how overweight Americans were, how over medicated and how we Americans feel a sense of entitlement to prescription drugs, especially for pain.
She suggested a strict plan of Tylenol and Aleve coupled with physical therapy. I told her that I had been taking the narcotic pain relievers for a few years by this point, and if the OTC stuff worked for me that I wouldn't be sitting in front of her. I asked if I could just continue the prescription that I had been on before, the long acting, under her supervision. She adamantly refused and began scribbling furiously on her notes and dismissed me. I was kinda taken aback, tbh.
When I went back to my GP for a followup, he shook his head and said he was sorry about how the meeting went with the pain specialist, and that the notes she sent back to his said "drug seeking behavior".
Great, I thought. That's just what I need.
Well, he continued with the 2 pills a day, that was his maximum limit, of the Oxycodone and sent me to another pain specialist maybe 6 months later.
This new guy, I thought, would hopefully be easier to get along with.
But... no.
From the beginning of the appointment he was very brief and what I considered to be pretty rude and cold. He told me that I was too young to be taking prescription narcotics for pain (I was 32 at the time) and he would be happy to give me the injections that he specialized in if I was willing to try something "that didn't come in a bottle/pill form" of treatment.
Again, stupidly, I asked why I simply couldn't continue with the long acting medication that had worked so well in the past for me. He and his nurse both just stopped and looked at each other and I was left wondering what in the world the problem was. Apparently the key is to never ask for what works if it happens to be the narcotic pain reliever and to just hope they offer it I guess.
So, I accepted the injections that he recommended and set up an appointment for a few weeks away.
When I went back to my GP for yet another followup... this jerk had also written drug seeking behavior in his notes. Needless to say I went home and canceled the other appointment I had with him.

Back with my GP, the pain in my back was still not letting up or getting any better. Eventually my depression had spiraled out of control and he decided to put me on the long acting Fentanyl. I was so happy that finally, finally I would get this pain under control, as I had hear so many great things about the Fentanyl.
He started me out on the 12mcg strength, then the 25, and at last the 50s, which took care of the pain enough that I could work, sleep through the night for the first time in years and start doing things with my wife and children again. The only problem, though, was that it made me nauseous. Horribly nauseous. And not just a little bit, but to the point where it didn't quit and I would even vomit a few times a week. No appetite, either.
*sigh*
So I requested going back to the Oxycodone, which he reluctantly did, but still just 2 pills a day (7.5mg). I was back to picking and choosing which part of the day I wanted to feel ok and which part I wanted to feel like crap. Some days I would take it in the morning and get some work done, other days I would take it at night so I could catch up on sleep after becoming exhausted from 3 days or so of only sleeping 3-4 hours a night at the most.

Then in April I ruptured another disc just loading up some wood into the trailer. Nothing big, maybe 30lbs, but the work needs done regardless of how you feel, you know?
My GP upped my dose to 2 pills every 12 hours, of which I would get 4-6 hours of relief, hurt for 6 hours, then take my next dose.

Last week my back began hurting extremely bad. I was afraid to call my GP again because he is always so stubborn and actually seems to get angry when I ask for extra medication from time to time as my condition flares up. He just makes me feel guilty, like I am doing something wrong or asking for the world when I am only wanting to keep the pain levels down to a workable place. He has always been pretty consistent in saying not to even ask for an increase above 2 pills a day. I had to practically beg him to up my dose to twice a day when I ruptured the other disc in April.
Turned out that I ran out of medication 3 days early on my 2 week supply of 2 doses a day. My back had flared up to the point that I could not sleep. I slept 2 hours one night, less than an hour the next, and none the next night when I had run out of my medication. My back was hurting worse than it ever had, and my left leg felt like someone had run over it with a truck.
My wife finally insisted that I go the the hospital and get checked out and get something for the pain, as I was sweating like a pig at that point and utterly exhausted from the lack of sleep.
I went to the hospital, and of course they asked me who my doctor was, what my prescriptions were, etc. I told them that my back and leg had been acting up worse than ever and that I had run out of my medication a few day early and I couldn't bear the pain any longer. I just wanted something to get the pain under control so I could sleep. I'm sure some of you have been to the hospital for chronic pain and can relate here; it's no picnic. They treat you like a drug addict. Believe me, it's the last place I ever want to go. Ever. I have been there before a number of years ago for back pain (pain specialists orders, go to the ER if pain becomes too bad) and they treated me like dirt then too.
I think when a 30-something guy comes in for back pain they automatically think "drug seeker". I'm sure they get their share, but it doesn't make me feel any better about being treated like that.
Anyway, they gave me a shot of Toradol, refused a shot of narcotic ( I didn't ask for any, but they made it a point to let me know that I wouldn't get any, either ) but sent me home with a script for a dozen Oxycodone that I could fill in about 5 hours. I left in pretty much the same shape I went there in.

Two days later I got my refill from my GP. I figured he was aware of the ER visit since they normally contact your doctor anyway, at least they had always done so in the past. (I had went in twice over the last two years, once for an alergic reaction to a new medication and another time for the back pain flare up).
Apparently they didn't call my doctor until the day after I got my refill from him. The phone rang that morning and it was his nurse on the phone. Didn't ask how I was or why I went to the ER, if my condition had changed or anything (not that I want the pity or drama, but since they are my primary care provider I thought they may ask), all she wanted to say was that my doctor was aware of the fact that I had medication filled from the hospital and that he would be extending my next refill date by 5 days. That was it. She hung up.

I have an appointment with him next week, per my usual two week visits if I want to get my refills, and I have a feeling things aren't going to go so good.

I was talking to a friend of mine from town though yesterday and he noted that I looked like crap. I told him I hadn't slept much and that my back was acting up again, and he said, "you know - why don't you just go over to Dr. lastname? I have friends that go there and he sends them out the door with whatever they ask him for. No hassles, you don't have to feel guilty about wanting meds with this guy, he just takes care of people."

But it made me think. Everything revolves around that little narcotic pill for some of us. When nothing else works except those pills, we are really left with no other choice, unless we just decide to suffer through each day, day in and day out, through each sleepless night, because we're stigmatized as druggies, or drug seekers and can't deal with the shame.
For me, it's to the point where I am ashamed every time I have to ask for something to control my pain. My pain specialist had called the pharmacy that I use when I took the breakthrough meds too quickly a few years ago and I'm not sure what she told them but I have never been treated the same since then. They look at me with undisguised contempt and disgust at times. If I need an early refill some months, they always call the doctor, speak loudly enough that I and anyone else standing there can hear them, and give them the date of my last refill and the fact that I'm a couple days early, get the ok to fill it, then do so while shaking their heads or something similar. I'm left there to stare at the floor, humiliated, because I took an extra dose of medicine twice over the course of two weeks. And my personal options, in my life outside of the pharmacy, are suffering through it alongside my family or taking an extra dose of medicine that day and going back to the pharmacy a day or two early to stare at the floor again and feel like a junkie because my pain flared up and I chose to relieve it.

I suppose I will give Dr. lastname a try, but who knows if he will have those wonderful notes to read through from the pain specialists that drew their conclusions immediately upon my asking about getting a medication that gave me relief in the past. And even if he does treat me and gets my medication to a level that I can finally live a more "normal" life with and stay comfortable, sleep like a normal human being, play with my kids and be a father again, even then I still get to go back to the local pharmacy with even more meds to fill, which in their minds I am sitting at home getting blooped out of my mind with. I could change pharmacies, sure, but I shouldn't have to.

I guess the point is that I (we) didn't wake up and ask God to give us chronic pain. To be treated like a criminal by so many in the medical community just rubs salt in the wounds imo, when all I want is to not feel like there is a screwdriver stuck in my back 24/7.
And if it's that little pill that takes that pain away... so be it. They're not the ones living with it, we are. I'm sure it's pretty easy to tell someone that they're going to be in pain for the rest of their lives and they just need to learn to live with it... as long as they aren't the ones that suffer it.

I'm not sure what to do anymore. I'm honestly about to the end of my rope. Tired of hurting, and just as tired of being made to feel guilty about wanting relief from the constant pain.

It's crazy. That one little pill and all of the turmoil, dirty looks, stereotypes and stigma that comes with it. Nobody has a problem with it if you're taking as much asprin as you need to get through the day, but add a little narcotic to it and you've just become a scumbag.

 
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Old 08-07-2010, 05:23 AM   #2
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Re: About to just give up. Need some advice.

This is an all too common problem among pain sufferers - It is extremely hard to find a compassionate Dr. who is not dehumanizing - however as a patient you are entitled to have adequate care so that you are not suffering - your post indicates to me that you are and based on your details this is called patient neglect and is against Medical laws (Patients rights to adequate healthcare). There is a very informative book - that helped me feel human again and not guilty or shameful for asking for a caring compassionate Dr. who thouroughly understands pain, pain management, and pain medication management as well as visits with a pain psychologist (he prescribes nothing unless you are suffering from depression as well) - but the book is called "Living With Chronic Pain Second Edition" by Dr. Jennifer P. Schneider. It is a 5-Star book that helps guide you thru understanding how to get the medical care you deserve - it talks in detail about how narcotics are very helpful to those suffering with chronic pain - not just for a few months but to have that pain medication for life - yes LIFE. Can you imagine a Dr. who would help you to be whole again and not have to worry about fighting for your medication constantly... I have always had to fight for mine. It took me 10 yrs. - 3 back surgeries and over 40 FAILED and EXPENSIVE injections, and an RF (burning of nerve endings) procedure which FAILED - in order to finally find a Dr. who really really really gets it. Good Luck to you. I know your pain. Please don't harm yourself, you really really need an understanding Dr. who isn't afraid to figure out which medicines work for you and at what doses. A great Dr. will ask you all of those questions, "What medicine worked for you and how long did it help?" and "What medicines don't work for you and what symptoms or side effects did you have?" and be willing to alternate medications until you are level. I would strongly recommend buying and reading that book - and bring it with you to every single Dr. appointment becasue every doctor should have to read that book - they should have to study it - its that good and its in lay-man terms so even a highschooler could read it. Take care.

 
Old 08-12-2010, 10:38 PM   #3
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Re: About to just give up. Need some advice.

I have been and am in the same situation. Including the ER visit. I too have found pain specialists worthless and my GP told me that she thinks they have an ego about not doing their job right if you are in pain...but they won't use the tools they have often. They have NO CLUE. They think just because they see lots of pain patients that they understand pain. The stupid Indian doc would have gotten another visit, a lecture and a report to the medical board from me which included her obvious disdain for Americans.

I am about to unleash the formal complaints on the hospital I am forced to use because they aren't doing anything. They don't even have pain management and send you out to a private one I cannot afford. My GP gives me the scripts I need because she knows the system is a joke...but nothing really works well for me without making me super sick as you said the Fentanyl does for you. Other than her and an NP I see for another issue...every single one I have seen blows me off and does the drug seeker nonsense. I want to scream and punch them in the face it makes me so angry. And of course that just feeds their false judgment when they see you getting upset. You cannot win.

I have a feeling I will not make it through this year because I just cannot stand living like this and there are no other options. We get depressed because of the pain and what do they do? Try to treat the depression...but that DOES NOT WORK. It makes as much sense as giving a cancer patient pain pills while the cancer kills them inside. The pain is killing us and they treat ancillary symptoms and not the real problem.

They tell us to do worthless things like go to a support group...well sitting with a bunch of other people who are telling me how bad they are and they have no solution makes me feel WORSE no better. I need to feel better or I will not survive. And rather than admitting failure these docs blow us off. My pain was CAUSED by doctors. They covered themselves and left me to rot.

Anyone who says pain sufferers are weak or less can kiss my @ss. I KNOW they would lose their mind if they had to suffer what we do for just a week. I am to the point where I hope they do have to. People say that sounds mean...well I think they deserve it for dismissing us and calling us liars and fakers.

 
Old 08-14-2010, 04:30 AM   #4
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Re: About to just give up. Need some advice.

Your post just makes my blood boil how some medical communities treat people with chronic pain. Don't give up on findng a PM who is compassionate, competent and can keep trying different modalities to help control your pain. What about other modalities like a spinal cord stimulator? Pain pump? Nerve blocks? Have you done any research for treatment? If you are not getting the pain under control can you go to another city? A teaching hospital? Mayo Clinic? Don't give up and don't let these fools try to intimidate you. I'm an RN with chronic pain so I can relate. I keep a copy of all my medical records at home. I read and research constantly and bring my PM doc research literature to keep him informed. We even try things that are a novel approach. (I have painful bladder syndrome and fibromyalgia). A good PM doc will be willing to think outside the box and be a partner with you in treating your pain. Is there a support group near by? Don't give up and keep asking questions. You also have a right as a patient to be treated with dignity and respect. Remind them of that. Don't give up and hope these bits of info. can help. Take Care, we are all in this together to help each other.

 
Old 08-28-2010, 09:49 PM   #5
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Re: About to just give up. Need some advice.

well you know what-there are plenty of us on these boards who have suffered same needless humiliations, etc.-in fact my PM doctor (whom is the most wonderful,kind compassionate physician and who i can tell anything and completly trust!)told me from the beginning;"you are going to be judged, labeled a drug seeker, frowned upon by everyone including your family cause all they know is you take pills and that can't be good!-but he explained it is my pain and just be honest with him and he will do everything in his power to make me as comfortable as possible be it narcotic pain medication, injections, pt, acupunture, tens unit, etc.'whatever it takes as i am an individual and thru the results of your diagnostic studies i know why you have pain and together, i will work with you and never be afraid to ask anything, no question is too silly or stupid in his book and he doesnt practice "cookie cutter pain management"
everyone responds to different treatments different ways-and most of all he told me he knows my pain is real, this man seems to go out of his way to make me feel comfortable,and when i tell him-doc i'm really having a rough time, cant sleep. am jolted awake with severe pain and how hard it is to sleep cuz pain is so stimulating in a negative way-he tells me dont worry were gonna figure it out-i mean it actually really seems to bother him when i tell him the meds are not helping me as they were, he promplty explains that he will have to do some tweeking and i'll get you to a level thats tolerable as best i can-and i know he means it-i am treated with such caring and respect by him and his entire staff-he did explain to me right up front that there is no amount of medications that are going to make me pain free and that i should only EXPECT minimal relief, but he will always do his best to help me live some quality of life, and to smile, and to be able to function-he says if i can get the patient's pain level down to at least 5-6 it is considered a success. so. you have been thru the ringers and then some and in my opinion beyond CRUEL, animals are treated better than you have, it seems hard to find a good pain specialist, but they are out there so dont give up!!!!! you will find a great doctor too,just pray to God(if you are religous at all)and have faith and keep looking-hold yor head up high and dont let these incompetant, clueless "professionals"lol get you down-dont give up-there are many resources to help you find a doctor just like mine-you can reserch the internet or maybe that dr your friend recomended(dr lastname)will be the one; contact the american acadamy of pain medicine-you can find them on the net, no one said chronic pain is easy, it really sucks!! but you deserve to have your pain treated properly. there are so many studies on how pain is so undertreated and it can shorten your life.

please do come back and keep us posted on your care


best wishes and good luck my friend
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Old 09-04-2010, 05:21 AM   #6
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Re: About to just give up. Need some advice.

Dont forget, the doctor works for you. You sign his paycheck in some fashion. Dont let them get away with crappy work. If the roofer came to your house and said he was gonna put 4 layers of cedar shingles when you asked for 1 layer of regular, you would fire him. If he did it anyway you would sue him. You are screwed anyway, might as well express how unhappy you are. Tell the dr he is FIRED. And you will be letting everyone know what a bad job he has done. Tell the world about the dr doing a crappy job.

 
Old 09-21-2010, 07:25 AM   #7
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Re: About to just give up. Need some advice.

you cannot give up you have to keep trying to find the dr who will listen and treat your pain. please do not let them make you think it is your fault that you hurt and there is help out there i had it and lost it and do not know what i am going to do now

 
Old 10-28-2010, 09:09 AM   #8
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Re: About to just give up. Need some advice.

I totally understand where your coming from. I don't have time to type out my whole story, but trust me, I understand. I will say, My GP first had me on Talwin, which is non-narcotic, but a great pain reliever. It was a bit too strong for me while working in the office. So she changed me to a pill that's real old, called Talacen. It is also non-narcotic. I've been to PM drs. and had the cervical epidural shots that only lasted 2 weeks at most, I'd done Physical Therapy, and so now it has come down to having a Anterior Cervical Discectomy and Fusion on C5,C6 & C7, on Nov. 8th in Shreveport, LA. I am currently somewhat controlling my pain with Lortab 7.5 x 3 daily with Somas x 3 daily.
I wish you all the luck on finding some help. Thanks for sharing your story.

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Old 11-08-2010, 06:29 PM   #9
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Re: About to just give up. Need some advice.

I think the biggest problem here is that apparently nobody thought to treat you for neuralgia, which is very likely a major source of your pain. Narcotics and analgesics can help nerve pain, but they can also aggravate it. I know, because I was taking such high levels of oxycodone that I ended up overdosing and spending a week and a half in the hospital.

The next time you see your doctor, ask about trying anti-depressants, anti-seizure medications, anti-anxiety meds, and neurotrophic drugs (like Neurontin) for your pain. If you haven't already done so, make an appointment with a pain doctor in a pain clinic setting, preferably one associated with a major teaching hospital. Pain doctors are trained to treat the cause of the pain and to refrain from using narcotics and analgesics as the only pain medications.

I wish you well.

Jeff

 
Old 11-12-2010, 01:41 AM   #10
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Re: About to just give up. Need some advice.

I was in a serious car accident when I was 17 it took me 10 years to convince any doctor that I had serious back problems their excuse was I was too young to have such problem. When Hubby and I's insurance changed to Kasier in 2004 it only took me 3 months to prove to my GP I wasn't lieing cause I told him what would it hurt to send my MRI to a neurosurgeon. It took him just minutes to find part of the problem only to my disappointment it only improved my problem by 50% it took me 5 years of research to come across this thing called Performis Syndrome I e-mailed it to my Doctor and within a week I was seeing a speicalist that at first did steroid injections to my suprise I was pain free for the first time in almost 20 years but I heard from a friend who is a massage therapist she told me the steroids stay in the joint and can cause serious problems down the road so I talk to my Doctor and he recommended Botox injections I will admit at first I was scared to death of this but once again to my suprise it worked better w/o side effects. I was glad cause the last resort was to cut that muscle I have had so many surgeries I didnt need another,

Sorry I got off track as to why I was posting for 10 years I was treated like a criminal and a drug addict seeking drugs My doc for awhile was ok prescribing me the pain meds until one day my pharmacist of all people called my Doctor saying I was taking a lot of Narcotics did this AHOLE go to medical school NO he wasnt a doctor so what gives him the right to do that.
Still to this day Im on several Narcotics for pain and closley monitored by my doctor yet my Hubby and his brother who went to medical school (yeah right in their wildest dreams) are gaining up on me saying I take too much they count my meds at first to see how much I take and now my Hubby took my meds and leaves me what HE thinks is ok amount maybe for him but Ive been taking them so long I have a tolerance buildt up. They act like I take what I take to get HIGH but in reality when I take the damn stuff its like taking a F'in aspirin. I wish ppl would butt out and stop acting like a doctor that knows what I need. If I could invent a machine like a tens unit and you hook it to you and them and it will zap your pain feeling to them I would bet a million dollars they would be shock and say how on earth do you get out of bed and do what ya do. Its ppl like that I would wish they would have to walk in my shoes for a week and control their meds and see how they feel
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Old 12-23-2010, 10:00 PM   #11
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Re: About to just give up. Need some advice.

I just read your post and feel for you. yes, there are many folks who are lazy and overmedicated BUT most of us chronic pain patients are NOT. I have not ever gotten "high" off of meds because if you are truly in pain, the pain will absorb the drug.

I wonder if, since the Fentanyl patches worked well for you, if you could take antinausea medication with it. Have you tried that?

Last edited by Micabrown50; 12-23-2010 at 10:00 PM. Reason: runon words

 
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