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feels like I am dying
feels like I am dying
I don't know what to do anymore. I saw a spine surgeon this week, he told me that fussion is not an option for me, he said it won't give me any relief and he can't justify doing a surgery that extreme when it won't help.. my doctors have kept me on hydro for 3 years now, and it's taking an extreme amount of them to get any kinda relief from this back pain. When I tell the doctors this, they either cut me off, or just rewrite more hydro.
So I am out now, I planned on stopping all together, and I honestly feel like I am dying here. I know I am not the only one to go thru this, but right now it sure feels like it. I just can't live like this anymore.
I am so sorry to hear that you are in so much pain. I am also on narcotics for pain management and I understand completely the issues that you are dealing with. It is very hard to tell the doctors that the med strength and dosage is not enough without setting of alarms....the FDA is so far up every drs. a$$ these days they are afraid of handing out to much Tylenol at this point....not really but you get the point.
So, you are totally out of everything at this point? How long until you can get a refill? What we need to figure out is how to get you to that next refill date. Not only are you going to be dealing with pain but you are also going to be dealing with withdrawal.
If you don't mind my asking it will better help everyone here in giving you advise if we have some idea of what you are taking daily. I am guessing if you are only on hydro (by the way no dr. with much experience could expect that hydro alone would be able to keep you comfortable as well as the fact that it is a poor choice for long term pain management. You need a longer half life med that will give you hours of relief when taken. So you are not needing to take meds every few hours) anyway that can all be addressed later first of all we need to get you comfortable NOW. So, I am guessing you are probably taking about 20 or so pills a day? Is that about right?
Depending on how long it is until you can refill there are other meds that are over the counter that will make it a bit easier for you to deal with this. Like I said it will be easier to help you when we have an idea of how much you are taking and when and if you have a refill. Did the dr. that refused you for surgery give you anything for pain? Who is going to continue with your pain management or have they left you out in the cold?
Sorry for all the questions. I have been right where you are at right now and I totally feel for you!!!
Hang in there. I think we can come up with some stuff that can make it a bit better for you!!!
Sid, no I don't mind the questions at all, not one bit. I know most people here know what I am going through, and this is the one place I can come, talk about this, and not feel soo ashamed and well, just worthless. Ok, this is a really long thread, but it pretty much explains everything... I hope you will read it Sid, you seem like the kinda person that could really help me with this stuff... Sorry for making it so darn long!
Ok, I will try to make this long story as short as possible, I know a lot of people don't even bother reading novells on message boards, not that I don't blame them.
Three years ago I was actually sitting right here at my computer, felt like I had a charlie horse in my leg... got up and walked it off, well, two days later, it was extreme pain going down the back of my right leg... went to my family doc, she sent me to a specialist, and was told I had a ruptered disc (L5 S1)... here is the thing, this is very important I think, I NEVER had any back pain before I had the surgery to fix my leg.. the surgery was a total sucess in that my leg was better from the time I woke up in recovery, but after about 2 months, my back started killing me... another MRI, showed that I had scar tissue that formed and grew on the root of the nerve they fixed. I had another MRI recently and this spinal surgeon is the 1st doc in three years since this started, that actually sat down with me, showed me my MRI on a computer to where I could make out what was what, and explained to me why I am in so much pain. He also said that he hates giving bad news to someone my age, but that it's never gonna get better, only worse. My L4 and L5 are gone.. they rest of my discs showed up white and healthy looking on the computer MRI images, but the L5 and L4 there was nothing there inbetween the vertebrae. My L5 is hitting bone against bone.
The surgeoun said that he could fuse that, but with the scar tissue, he still doesn't think it would give me any relief that would justify doing the surgery. And every surgeon I talk to about the scar tissue says they can't operate on that, it would just make more grow back even worse.
Ok, now for some answers, yes, I am taking 20 + lortabs a day. I have even taken up to 40 before. I scared myself ********************less (pardon the swearing, I am not usually like this, it's just soo frustrating) anyway, when I realized at the end of the day I had taken that many, I though ok, just kill your liver now. I then went to my former doctor, told him that the hydro isn't working at all anymore unless I take more than I am supposed to, and he said "I'm not writing you any more pain med, you're hooked on them" Well no ********************, I have been on them for 3 years! I did stop taking them about a year and a half ago to see if the pain I am feeling was being caused by taking the pain killers, I have heard about that. Well, it wasn't. My back hurts 24/7.. and the surgeon I saw said that's mainly from constant pressure from the scar tissue being put on the nerves.
Ok, so I found a new doc, showed him my MRI reports, and he wrote me for 90 lortabs 7.5, one every 8 hours. Seriously, that's not going to touch my pain.
I have asked them to please switch me to percocet for a while, they just act like I am a drug seeking junkie. I know there are people that sell them, and that screws it up for people that really need these. But, I have been in the position where I had to pay a visit to the people that do that, that's all I will say about that, since I don't know how open I can be on here. Let's just say that I am about to lose everything I own. They aren't cheap.
Ok, I took a 50 mg time released morphine pill a couple of times, a friend gave and I couldn't believe how good I felt the next morning.. I wasn't grabbing for the hyrdo's, no withdrawl feelings, no waking up in agony.. I mean I was able to get right out of bed... It was amazing, something that hasn't happened in over two years now. I would love to be put on some kinda time realese med, but let me ask my doctor about that, and he's just going to cut me off.
I honestly have been so depressed lately, I have spent hours crying and crying. I am being 100% with these docs, and they are totally leaving me up ******************** creek without a paddle. Back when I was going around lying to them to get them, I may have lied, but I only ever got them to take for my back, I was able to get them easier. Now that I am honest with them, it's insane that they don't take any steps tp help me. I honestly read somewhere that a doctor cannot leave you in chronic pain without doing somethign to help. But I guess they don't go by that rule. I have tried finding the site my friend sent me on the internet, I lost the link to it, but I would lvoe to take it to my doc and show it to him.
Ok, I was totally out today, and someone gave me some tremadol, surprising, they helped.... I never thought they would. Maybe it's the fact that it's something different from the hydro? It didn't relieve a lot of the pain, but it made my day almost tolerable. Ok, then a really dear friend if mine brougt me 50 L 7's, and the thing is, I bet I won't be able to make them last 2 days.
I agree 200% that hydrocodone is not the meds that docs should be giving out for chronic pain. I didn't know jack about pain killers back when this all started.. had they told me that coming off them would be as bad as coming off >>>>>>, I NEVER would have taken the 1st one! for two years, they wrote me and wrote me for pain killers, now it's like pulling teeth to get a doc to write me anything, because I was going to the ER a lot, and seeing other doctors. But ********************, when you feel like you are about to die from the pain and the W/Ds, you'll (well I will) do anything to get them. Not anything, you know what I mean, lol.
Ok, I have two refills, one I bet was cancelled b/c I called in that it was stolen when I ran out, and the pharmacy ran a report on me, saw where I waw sgetting more than one filled at other places, and called my doctor. PRolly reported me to the DEA as well.
And yes, the spnial surgeon wrote me for 60, three a day, and I have a refill on that one, I am hoping it didn't get cancelled. Everytime I try to talk to my new doctor about changing my pain meds, he says he won't talk to me about it. There was a doc in his practice that was just suspended for this kinda thing, right before I started going there.
Sorry this was so long I thought it might help if you knew more the situation. Thanks so much for listening, and I hope I didn't write too much here and it doesn't get read, lol.
Oh also, the biggest reason I feel like a worthless human being.. I have 3 kids, one 17, boy, one 15, girl, one 12, boy. I used to get out and do so much with them, and now I can barely fix their supper if I don't have my painkillers.. I mean they get it fixed, don't get my wrong, and I hide that I am in agony from them while I am doing it, that and other things. But man, I always prided myself on being a good mom, a good single mom, never missed a football or basketball game, a school play, etc, and now it depends on if I have pain killers wethere I go or not. See, told you, I am worthless.
also, I meant to say thank you lonelyism for the kind and encouraging words. As you might have already read from my 1st reply, I didn't last long. And it really blew me away that the person that brought me the 50 hydros even did it. She and I don't exactly get along, she is my ex-husbands wife, but that isn't why we don't get along, we never were friends before they got together. But she also had to have back surgery just this past year, and we got kinda close talking about all this stuff we are going through. I will tell you that I absolutely hate pain killers. I hate that I have to take them to live even a simbliance of my life before my back injury. I hate that when I try to be 100% honest with my doctors, they don't take it serious. Well the two specialists I have seen did, they read the MRIs and told me, exact words here from both, "you will pretty much hurt like this for the rest of your life. I have been soo depressed since that day last week. I know I am soo sick of getting up 20 days out of the month with the only thing Ican think about is where my next pain killers are going to come from. I am not suicidle, but I know I can't live like this. And no, I am not saying I would ever hurt myself, I hve three beautiful kids that count on me for nearly everything.
Again my thanks
Wow, you have really been through a lot. I hate that the drs. are getting so nervous that they are forgetting to focus on helping someone in chronic pain, they are too worried about what it will look like if the DEA decides to stop by.
It is crazy that any Dr. would try to treat the kind of pain that you have with Lortabs or even percs. You need to be on something that is time released and works for many hours. I am sure after seeing the difference when you tried the the time released morphine pill you know how much better that works for your kind of pain.
So, you have gotten a few pills that will at least keep you out of extreme withdrawal for a couple of days but I imagine that you still have a while to wait until your next refill. You might want to call the pharmacy where that refill is and just ask them to confirm the date you are able to pick it up. Just say you want to be sure you have the car that day or some silly thing like that and then you will know if it is okay. They will tell you then and there if it has been cancelled. I would just hate to see jump through hoops to make it to your refill and then find out it was cancelled!!!
So, how long exactly is it until that refill? Is there any other source for you to try to get meds from? I know that is not a long term solution but I am sure right now it is the first thing on your mind. It is bad enough to be in lots of pain...add withdrawal to that and it becomes impossible. I know exactly what you are talking about with not being able to even get into the kitchen and make a meal or whatever because you are feeling so bad. I have heard MANY people say that they would rather jump of the roof than go through withdrawal. I totally understand your frustration and agony!!
Have you ever gone to a pain management dr.?? If not maybe your dr. would be willing to refer you to one. They are more likely to put you on a long acting med.
There is one other possibility. If you were not dealing with chronic pain I would NEVER suggest it but due to your medical issues I don't see any way for you to NOT take meds. You need them to function. So, for that reason I bring this other option up....Methadone. It is often used for chronic pain due to the long lasting effect. It has such a long half life (time the med works in your body) that most people can take it just once a day. Although some pain pat. say it is better for them to "split dose". I am not sure if you have a clinic in your area (some people travel over two hrs. to clinics) but it something that would solve a lot of your issues.
You are in the worst of all possible situations. You DO need the meds but I also believe that you are addicted and that you probably will never be able to regulate your own meds correctly. NO addict can. It is just a fact of life. We always think that if we just take one more we may feel better and we can just make it up another day...and we all know how that story ends. No refill for weeks and no meds either. The reason I say this is because even if by some chance you were able to find a dr. that would write you a script for longer acting meds my guess is that you would probably fall back into the same pattern and over use them. It is just a fact of life for some of us. Do NOT feel bad about it at all. I am not trying to be mean!! Honestly many, many, many of us just need a bit of help to stay on track.
If you are interested in the Methadone you could probably find a clinic that would take you in very quickly!! You would be surprised how nice you would find it to have that monkey off your back. It can be a pain to have to go every day but the freedom from the counting pills and running short game is worth the trip each day. I think that you should really consider this. I have heard so many people in your EXACT position say that they feel like they have there life back!!!
But again, if that is not something you feel you want to do then I think you need to either make an appt. with your current dr. (did he call about the pharmacy thing? How did that end) or try to find a pain management dr.
Sorry this was so long I will sum it up with the questions I have...I was kinda brainstorming as I have been typing. How long are you going to be okay with the meds you have no hand now?? Just today?? How long until your next refill? And finally What do you think about the Methadone?
Hang in there.....hope to hear from you soon!!!
sorry it took me soo long to get back to you. I haven't had a computer to get online with at home, so it's been hard to get on here as much as I would like. the 50 that my friend brought me are gone, of course. And even worse news, my new PCP, who seemed to really understand what I am going through, now has done another report to see everything I have had filled, and is cuttimg me off. I have no idea where to turn anymore. I went to his office last Sat, to talk to him and just be totally honest, and let him know that yes, I am taking more of the hydro then I am supposed to, because it is taking more and more to get any relief... but when I got there he wasn't there, and he had called ahead, told the nurse practioner to not even talk to me about pain meds.. evidently there was a doctor from that office that recently had his liscense suppsended for writing pain scrpits.. this happened before I was even a patient there. I really thought that this doctor i would be able to talk to about this and he would help. You would think that a doctor of all people would understand that after 3 years, the hydrocodone isn't working anymore, and I have been getting srcripts from more that one doc, but not going around doctor shopping. I mean the only other doctors I have gotten pain meds from are the specialists that my primary care physician sent me to, and I told them what I was on, yet they just wrote me for more of the same. i don't get it. I guess I shouldn't have gotten them filled, but I thought since I was honest about the fact that I was getting them already, but taking them more than I was supposed to, it wouldn't get me in trouble. I think the fact that I went to different pharmacies might be the biggest thing there. The pharmacy is the one that ran the report and sent it to my doc.
Ok, I was there today, hoping the main doctor that first saw me would be in but he wasn't, and after last Sat, the way the NP treated me, I didn't want to stay, but I do have a really bad rash on my hands that needed looking at. When I was sitting in the waiting room, the receptionist was right in front of me, and she got off the phone, looked straight at me, then said to another girl behind there, "Stephanie, that's the one" and looked at me again. Then she ducked down and I couldn't tell what she was saying. It really freaked me out so i left. I am not a paraniod person at all, this was not paranoiya, I saw and heard her the first time, she was obviously talking about me, and even the girl next to me noticed it and said that wasn't right.
So, I have 13 7.5s right now, and it's Sat., I am flat broke, no way to get any more when these are gone, and it's taking everything I have to try to strech them. I am right now just taking enough to not go into withdrawl, but it isn't touching the pain.
If this doctor cuts me off, or dismisses me from his care, then I feel like giving up. It's like now that I am being totally honest with the doctors, they are treating me like a junkie, when before when I would lie to get them, I was doing fine, lol. Crazy! I was going to even ask him about the methadone, but now I don't even think I will get the chance... after that little thing today, I am literally afraid to go back there!!!
I just found this site and was reading your posting. I agree with the other responders - you need to take yourself to a chronic pain clinic. Even with your history with the doctors (their tendency to pidgeon-hole people) as well as your own admitted dishonesty - the pain clinic would be ideal for you. It seems hard to believe but your back could get worse with the additional surgery, I've pay health claims where this has been the case; you are now caught in what I call the "pain syndrome" - it takes over everything in your life almost. At this stage of the game, you need the detoxification and the replacement prescriptions and activity with a verified program.
I went many years with surgery-related issues, including the feeling that I could not do any better than what I was doing. It took getting out of the situation a bit for me to see it clearer where I was not open to change. With three kids, the last thing you need is to get yourself into a legal issue on top of the medical.
You related that you were seated at the computer - do you work outside the home? Is weight an issue now that you aren't as active? I don't want to negate your feelings, but you seem at a point where continuing your present course won't be in your best interest. Kind of like Dr. Phil's question - how is that working for you?....at this point, it isn't and trying to force it to by going outside the prescribed treatment has damaged your relationships with the people that are able to assist you. So,working on rebuilding that trust may be accomplished by the chronic pain clinics.. I don't know what city you are in but almost every insurance company has at least one provider. Maybe a crisis line is available with one of them?
I hope you are doing better and the people that are writing you have helped you. The main responder seems to know what she/he is talking about. Just don't shut down to alternatives at this point - openness is lifeline to success in this, what you've been doing hasn't worked, if you keep doing the same action, the same result will be had. Best wishes to you.
<Just don't shut down to alternatives at this point - openness is lifeline to success in this, what you've been doing hasn't worked, if you keep doing the same action, the same result will be had.>
that's just the thing.. I have told many doctors that the meds they are giving me is not working, and that I am open to anything at this point. I am terrified of being in legal trouble, my kids only have me. My two oldest, their dad may as well not even be here, he never does anything with or for them, and my youngest son's dad passed away almost 9 years ago at a very young age, from a rare heart condition. When I tell the doctors in 100% honesty what is going on with me, the only two responses I have gotten is either being cut off any meds totally, or wrote for more hydro. And now that this pharmacy has run this report, they call it casper, not sure if that's the right sp., I am sure it's an acronym for something, but I am terrified of what's gonna happen. Even though I have told each of the three doctors I ahve seen what the other doctors had me on, and how much, and that I was taking more than I was supposed to to get the same effect. And after what happened the last two times I went to my new doctor, I am now even scared to go there to talk to him period. I have reached out to at least 4 doctors for help, and they are not doing anything.
when i say 3 doctors, it's my PCP, he reffered me to a neorosurgeon, and he referred me to a spinal surgeon, because he, the neurosurgeon, doesn't do fussion and he thought that was my only otion left to me. Well, as I said in the first post, that doctor doesn't think it will help, so he won't do it, and I am not exactly wanting to have another back surgery anyway. I want to talk to this new doctor about all this, but I am afraid to even go to his office, after the last visit, where the receptionist clearly pointed to me and made a remark to one of the other girls behind the desk, right after getting off the phone, she looked at me and said, "that's the one" to someone else. I got the hell out of there. the girl sitting next to me even asked why she was saying that about me, so it wasn't me being paranoid, I wasn't even thinking about anything like that. i was actually there for something other than my back, I needed my ear looked at. Now I am terrified that any day there is going to be a knock at my door and I am going to be in some kinda trouble.
I hope that you'll find a doctor who will help you. I can't begin to imagine having to live with the horrible pain you're having.
Best of luck to you.
Last edited by StephM22; 04-17-2007 at 09:03 PM.
I joined this forum specifically to reply to you.
I have been through what you are going through. I'd love to try to help you if you'd let me.
I suffered from extreme back pain with sciatica down both legs for two years. At the time, I was in college (for the second time around) and I did not have insurance. I was young and looked even younger and had short spikey blond hair with "plugs" in my ears -- not punk-rock, but a little on the alternative side. No doctors would take me seriously. I could tell some of them thought I was drug-seeking. Finally I found out about a free county service that paid for serious medical conditions, I got the MRI that I needed. A few days later I received a registered letter from the health clinic saying I had to come in IMMEDIATELY. I had one of the biggest ruptures they had ever seen, it was in the middle of the disk (L5-S1) and that's why I had the sciatica down both legs. The put me in touch with a surgeon and I was scheduled for surgery ASAP.
The surgery helped, but too much damage had already been done. Subsequently found out L4/L5 was also herniated...as sometimes happens -- one disk is operated on and the one above becomes unstable.
Anyway, the whole time I had been getting my pain meds online because no doctor would help me. I did not really know about pain doctors and I did not have insurance anyway -- most pain docs where I live will not see you without insurance.
Eventually, I got insurance and my friend recommended her pain doctor. When I told him I was taking 8 Vicodin a day (more like 30 Norco) he switched me to Oxy IR straight away (12 per day). Then he moved me to a long-acting med (Kadian, which is sustained release morphine).
I agree that you need to find a pain doctor and get off this merry-go-round. Good, compassionate doctors do exist.
My friend has this whole theory about "battered patient syndrome." That is what happened to me. I began to think that there was something wrong with me. I became afraid to stick up for myself (with doctors). Even with my own pain doctor, it took me a long time to stop being afraid -- I would get sweaty before every visit. I had to learn how to advocate for myself.
I don't know if there is a Private Message function on this forum. I see there's a buddy list. Feel free to add me, then I'll give you my email. It was a friend of mine that I met online who helped me deal with all this stuff.
Also, there are pain message boards who will help you find a good doctor.
I wasn't going to get into this, but I was re-reading the posts and sydbean brought up methadone. I too was thinking the same thing.
At one point after surgery, I was still in pain and could no longer afford the online meds. I couldn't stand the pain and withdrawal, so I went to a methadone clinic. You know what...after some initial frustration, I ended up with weekly takehomes and a split-dose...it worked so great, I cannot tell you how much better I felt. However, by then I had found my pain doctor, so I left the methadone clinic to go to my pain doctor. For me, nothing has worked as well as methadone (with a split-dose), but it made me gain weight...that is the one reason I don't ask my pain doctor for it.
lil_freeze, I haven't read all your posts and I don't know you, so I cannot say whether you are an addict or not. As for myself, I see myself somewhere on the spectrum between chronic pain and addiction. I take my meds as prescribed now that I am receiving an adequate amount of a long-acting medication with a short-acting med for breakthru pain. Most days I take less than prescribed.
You have probably heard about "pseudo-addiction" -- a condition that occurs when a pain patient is un- or under-medicated. The patient may behave "like an addict" (doctor shopping, getting refills early, etc.) but they are really seeking pain relief. Once the pain is under control, the other behaviors stop.
Also, a note about addiction and chronic pain. Having one does not preclude the other. So it is possible to experience addiction and chronic pain. Long-acting medications have been found to sufficiently control both disorders. Methadone is especially well-suited for this. Methadone can be prescribed by a pain management specialist...it does not have to be sought at a clinic as long as the primary reason for prescribing it is for the treatment of pain. Also, doctors could implement extra controls at the beginning of treatment if that was deemed the best course of action. For example, they could prescribe weekly or bi-weekly instead of monthly. They can do "bottle checks" or urine screens, if deemed necessary. There are pain management doctors who are also addiction specialists who are skilled and comfortable with treating patients who have co-occurring addiction and chronic pain.
I'm not sure if we are allowed to post links here, but this is one of my favorite papers on the topic: http://www.doctordeluca.com/Library/...onsForCP05.pdf
It discusses looking at addictive disorders on a continuum rather than the traditional either-or, black-and-white approach. And it also addresses chronic pain in patients with a history of addiction.
Last edited by Wren9; 04-18-2007 at 09:07 PM.