[wisewoman]

I don't know if anyone will know this but here goes. I have been on pain killers from darvocet to vicodin to percoset as the pain progesses. My last bout I was given tylox, never heard of it, see it has oxi in it so know it's strong, only 5mg I think. My question is why is nothing really helping my pain? I had a big shot of morphine in the hospital which helped I later realized but I was obviously still in pain. I coulda gotten on top of it with a few more of thos shots and a bit of tylox in a doggie bag.

Am I growing immune? Do my mental health frugs like prozac, clonazapam, wellbutrin sr Make narcotics not work so well? I have a tummy issue, my whole life, and have had ulcers and gastric bleeds, very careful about taking nsaids. However, during this latest crisis I have taken motrin and aspirin and doubled up on my tummy pills.

So what's going on? I am afraid of poor pain management due to severe childhood trauma and unattended pain. I believe I have a very high tolerance for pain due to my ability to dissociate, I don't think I am a wuss. Why are these meds not working?

[(JD)]

When were you last detoxed for pain medicines? Pain managment is a day to day chore, and if you don't have a doctor helping you with this, along with the questions you have.. then you might need to go into hospital and detox and begin again? TC

[eskielover]

wisewoman,

It sounds to me like you haven't been given the kind of pain medication that works for you or haven't been given the dose that works.

I am definitely a pro at the narcotic pain relievers. My pain is migraines that ended up being 24/7. They started about 10 years ago after migraines were the side effect of my AD meds. I never even had a headache in my life before then.....at that point, I wasn't without one. I started going to a neurologist when it progressed to being continual. I needed the treatment because everytime I would go into the psych hospital, I couldn't get any help because obviously they didn't belive in pain meds. He started with the migraine meds but they messed with my heart, so were eliminated almost immediately. Then came the mild level pain meds. He even put me into the hospital for a week & did an IV treatment with DHEA. He gave me morphine instead of the demoral that I had found worked some & I ended up itching all over my body. It was at that point, I found that morphine & every derivitive like dilodid caused that reaction. He was not willing to put me on narcotics & when an MRI showed up a neck injury, they decided that neck fusion should be the answer to my migraines. After the neck surgery, they provided me with a pain specialist in the hospital that started me on the fentynal patch at 100ug/hour. It was a patch that was changed every 72 hours. They figured that if there was any pain over that was breakthrough pain & I started going to a pain specialist after the surgery along with doing the physical therapy. Unfortunately, the pain didn't go away even with the patch & it continued at 24/7. The pain specialist decided to try other pain blocking treatments & then gave me prescriptions for other narcotics pills. Nothing worked & I went to a pain specialist at UCLA. I was told that I didn't have migraines & that all I had to do was exercise. Try to exercise when your head never stops hurting & with that came a continual upset stomach. I couldn't get out of bed & laid in a dark, quiet room with no smells allowed. I guess acording to her, the migraines must have been all in my head......(yea, that's where migraines are). I continued with the pain specialist & continued going to the ER every 3 days for a demoral shot, just to have about 8 hours of relief. I got so mad at the situation I was in & was loosing patience with the pain specialist, but didn't know what I could do.

I took vacation to our condo in Jackson Hole Wyo & when I got home, they had come up with another pain med that contained fentynal but was in the form of a lollypop that could be taken every 4 hours. It was great....it actually worked when I used it......then came about 3 hours later & back came the migraine. I would use another lollypop & had relief for another 3 hours. That was the first time I had enough relief to function for at least 3 hours at a time. Unfortunately, the pharmacutical company changed the formulation & they quit working. I don't know why but it did. Not only didn't it work, but it was like putting a rough piece of chalk in my mouth & it rubbed sores on my cheek on top of not working. At that point, I knew that the fentynal was working & that the dose I was on wasn't enough to actually work. I knew that the migraine pain I had wasn't breakthrough pain because I was never without the pain as long as I was on a specific level of fentynal. I wasn't willing to go back to the way it was before the fentynal lollypops were found to work & asked the pain specialist if he would be willing to prescribe the higher level of fentynal in an additional patch to equal the level of fentynal that the lollypop fentynal provided. He wouldn't up the dose to that level & then at one appointment asked me if I had any extra patches & to try using 2 of the 100ug patches. I was so happy when I used the 2, I no longer had any migraine pain. My husband was with me at that appointment & heard him tell me that but when I went back to him, he denied ever telling me that & refused to prescribe that amount of patches. He told me he would give me 1 month prescription & to go find another pain specialist because he wouldn't treat me anymore. I coutinued using the extra patches I had until I could locate a new pain specialist. I went to one & she told me that if I went off all my medications that my pain would go away. I asked her what her plan would be if the pain didn't go away & she said that is would & that was the only possibility. She sugested that I go into the hospital where my pdoc & psychologist worked while going off the meds & gave me the name of a pain specialist that worked in that hospital. I went to him & he wanted me to have another MRI & did a blood test. When he saw the MRI, he said that the leisions showed that I was having really bad migraines & when he found out that there was a specifil level of fentynal that worked, he was completely willing to prescribe that level. He said that if it ever quit working (if I became tolerant), that we would have to find another way of taking care of the migraines & then we might concider my going off the med before starting something else. I have been going to him for 3 1/2 years & am still on the same medications without ever needing a higher dosage. I have had other pain that has required medication but as soon as that situation was over, I went right back to just requiring the fentynal.

The pain specialist I have now is awsome & is willing to work with all his patients to find the medication that works for them & then the level that they can tolerate that keeps them out of pain or at least at level that they can tolerate. When I first went to him, I asked him how he was willing to prescribe that amount & the other pain specialists weren't. He said that every month, he keeps track of my quality of life. He said that as long as that is documented, the DEA won't come after him for being incompetent. He said that if the level of medication stopped working it could be one of 2 things.....tolerance is when the level of medication no longer works & a higher level is needed. Becomming addicted is when I need more medication to get the same feeling I get from a narcotic. That is something that narcotics have never one to me. I have never gotten a good feeling from any of them....Vicoden never did that either, so I have a hard time understanding what kind of feelings people get from narcotics. All I have ever felt from them is a relief from pain......with the level of fentynal I am on, I wouldn't think I could even function, but I can do everything I could do before migraines. I am finally feeling just normal without any pain & that has been such a huge relief over the past 3 1/2 years. I just pray that this will continue & don't know what I will do once I move to Kentucky other than fly back here to see him every month. That will be expensive transportation to see a Dr, but plan to see both my pdoc & pain specialist on one trip.

I honestly don't think that you need to go off your meds....I know I didn't. I think you just need to find a wonderful pain specialist that is willing to work with you & find the medication & the level of it that will finally help you control your pain. I believe your pain is real....you need to find a Dr that believes you too.

Debbie

one thing right off.......if you've got stomach problems, you sure don't need to be taking aspirin.........not at all......and no motrin either. motrin will cause you to develop ulcers, if you didn't have any before. tylox is not good for your liver. at all......too much of it could cause serious problems.......one thing about my pain is if i let it get ahead of me, nothing works. i have to take it before the pain is even a bit more than barely there.....you can never let the pain get ahead of you....it's much harder to control if you don't figure out what schedule works for you.......BUT you should never take a med before the set hour that the doctor prescribes for you.....you would need to talk to the physician and be certain that you are both on the same page. below is the info on tylox.......

USES: This medication is a combination of a narcotic (oxycodone) and a non-narcotic (acetaminophen) used to relieve moderate to severe pain. Oxycodone works by binding to opioid receptors in the brain and spinal cord, and acetaminophen decreases the formation of prostaglandins, therefore relieving pain.

HOW TO USE: Take this medication by mouth, as directed by your doctor. You may take this drug with or without food. If you have nausea, you may take this drug with food, although doing so may decrease its effectiveness. Consult your doctor or pharmacist about alternatives for decreasing nausea (e.g., antihistamines, lying down for 1-2 hours with minimal head movement). The dosage is based on your medical condition and response to therapy. Pain medications work best in relieving pain before it becomes severe. Once the pain becomes intense, the medication is not as effective in relieving it. Use this medication exactly as prescribed. Do not increase your dose, take it more frequently or use it for a longer period of time than prescribed because this drug can be habit-forming. Also, if used for an extended period of time, do not suddenly stop using this drug without your doctor's approval. When used for an extended period, this medication may not work as well and may require different dosing. Talk with your doctor if this medication stops working well. This medication contains acetaminophen. Do not take more acetaminophen than recommended (see Side Effects section).

SIDE EFFECTS: Nausea, vomiting, constipation, lightheadedness, dizziness, drowsiness, flushing, vision changes, or mental/mood changes may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. Tell your doctor immediately if any of these unlikely but serious side effects occur: slow/irregular breathing, slow/irregular heartbeat, change in the amount of urine. If you do not have liver problems, the adult maximum dose of acetaminophen is 4 grams per day (4000 milligrams). If you take more than the maximum daily amount, it may cause serious (possibly fatal) liver disease. Tell your doctor immediately if you have any of the following symptoms of liver damage: severe nausea, yellowing eyes or skin, dark urine, stomach pain, extreme fatigue. An allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of an allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.

[eskielover]

I think that the best part of the fentynal patches I use is that I change them every 72 hours.....it never lets the pain even get started so it doesn't have to stop any pain......it is a constant level of control without having to take meds every 6, 8, or even 12 hours. It is an awsome feeling being on constant pain control without the rollercoaster feel with shots or pills.

However, I know that many people aren't able to use the fentynal either......guess I am just lucky.

Debbie

[wisewoman]

Thanks Pat, Debbie and Sky, Let me clarify a few things. I have had the darvocet and vicodin PRN for lower back spasms which I have had for many years and have gotten better. I don't take drugs everyday. I also had on hand for migraine. 30 vicodin would last me a month which means that some days I would have none and some I woulod have 3-4. Sometimes well over a month. Pat, you are too correct about letting the pain get ahead of me, but then what? The E.R. should have kept me for a few hours and a few more doses and I might have been okay, I am not okay, a week later it's back harshly. Your post scared me about tylox being very dangerous. Did you mean because of the tylenol content? Each tab, to be taken every 8 hours has 500 mg of tylenol. And yes, I was managing about 5-6 hours and needing more. Not now that the poos been scared outa me! I got on top of this last night very late and then this a.m. it's back. Clear that 8 hours is too long to go for pain management. I know I should never ever take aspirin or motrin but I thought a short period and a lot of tummy meds on board would help. As I lay here contemplating my navel and typing with my left hand I just don't know what to do. Do I go to the E.R. again and get morphine or whatever? Do I get someone to drive me to a good teaching hospital 2 hours away? What will convince these guys I am not seeking a high? With that in mind I have considered finding weed for pain management. Now it's been many a year since my college days and I know I don't want to smoke dope but putting it in another form and using it as a medicine? I know that there are different kinds
that do diferent things. Or maybe I just stop all of the meds and drink booze! I am in pain and the flexeril has me a bit gorked. Thanks for yor support.

[(JD)]

Now if your lifestyle would allow you to go about your day with a buzz...that would be one thing... but I don't think that's going to work for you.

Perhaps.. still.. going to someone who really cares about helping you and teaching you what meds work and how for you would be a good thing. (Finding someone like that is a very tedious, difficult path imo)

Muscle spasms are very painful. There are many meds that treat spasms well... if you can take one that would be a good benefit. (Robaxin worked wonders for me for many years.)You have flexeril...why not begin with working with that... it's dose and when you take it... to help figure out what you need, when? TENS units are great too for intermittent spasming.

AND if you can find an ongoing pain management specialist (like my psychologist is..) you can find a solution... perhaps part of your problem is NOT taking pain med on an ongoing basis? A small dose taken regularly might be a way to manage your pain?

Without good support you can get into all sorts of additional problems, as you know... like rebound pain. That might be what is happening. It's real pain, but the cause is from going OFF pain med rapidly... the body creates the pain the med took away. Like I said, you need someone expert on this to help you work through all the complexities, imo. TC

Too many variables WW... pain is subjective and usually takes more than one person to figure out!

[wisewoman]

oh sky, if I could only tell you what I have been through today. i am going to use no caps as it makes it easier. first of all what is causing the spasms or pain ? theory is currenlt torn rotator cuff. i have been in a fetal position in the er with my sore arm pushed as hard as could be into a pillow against the bed rail. i am speaking about the most horrid pain i have ever had. They gave me a shot of demerol and an anti nausea and were ready to let me go. I had no relief! i got another shot, some relief. That was about 2 hours ago and the pain is growing. I almost can't stand it. She told me to use skelaxin and the tylox or the vicodin. see a p.t first thing tomorrow. That and I am seeing my doc's spouse tomorrow and want an immediate referral for an mri and an orthopedic surgeon at large teaching hospital. I am in agony. flexeril, clonazapam, nothing touching it. shoot me someone!

sweetheart, i'm on my way with sour cream cookie dough and we're going to rub it on all the places that hurt.

the intensity of your pain sounds like my breast pain. and you do have to have a "special" doctor to work with you. i finally found a physician's assistant, female, who believes everything i tell her and she consults with the office doctors anytime she feels she needs more input. but it took 30 years to find her.

my pain completely overrules anything else in my life when it is that bad. i even vomit because it hurts so bad. i know you aren't trying to get high. but i will tell you this, brownies with marijuana that has been clarified in the butter sure have helped me on more than one ocassion. and i didn't get high. i just got pain relief. i've known many cancer patients, near the end, who have used it and were able to have relief until the end.

i'd give anything if i could go to the doctors with you. my knowledge of the meds is good enough that i would understand what they're giving you and why.....and i would question them thoroughly about everything they were doing. everyone needs a patient advocate and i would love to be yours.

love you, pat

[wisewoman]

thanks pat, no sleep and major drugs on board, gotta find help today. yes, i was looking for weed last night, apparently i don't know who to ask,

[wisewoman]

update, have new med with less tylenol, more oxi. Got cookie incrediants and have a doctor's appoint with ortho, and mri at large teaching hospital tomorrow. woke up in severe pain but other then wanting to faint at thr drug store earlier, I am okay. pain drains me and even ittitates my bowels. better day so far.

[wisewoman]

So I took the stronger percoset 4 hours ago now, it has 7.5 oxi and 325 tylenol. I had good pain management for those 3.5 hours! Now it hurts like.........the bottle says every 6 and I am tondering what to do now? I think I shoulda asked the doc. However, I think by taking the small dose vicodin at 4 hours I will be okay. I will check tomorrow, and meanwhile I am not getting over 2000mgs per day which is half the max.

All drugs aside, this hurts and I am amazed at the injuries and illnesses we live through and with daily. Just astonishing that we can cope. ouch, by

[wisewoman]

THis is just plain frustrating, i made it 4.5 hours this time on 7.5 hydrocodone and a total of 750 tylenol. This cant happen glad i have doc again tomorrow. i think we need bigger guns that shoot less tylenol. i am in pain. it stinks. what else can i say?

[bebop]

hon I have been told not to wait the 4 or 6 hrs..if the pain starts up again take another one. given reasonable time that is..would not want you to OD on this stuff. I have been on vicoden for a year and a half with no results. I hate pain!!

[(JD)]

What is the half life of the medicines you are taking? Any chronic pain patient has to have the doctor figure them in for good management, imo. I find I can take half as much twice as often with better results for day to day pain. TC! I've been in pain nearly 20 years now and have JUST THIS YEAR found a good solution for current flares... I hope you find such sooner!

[wisewoman]

I went to the teaching hospital today and they did xrays and thought that it is not a torn rotator cuff but some spur thing related to aging and arthritis and other injury. She gave me three injections in the shoulder and It felt better immediately. Not perfect but better. She felt it would be a quicker and less painful recovery. My range of motion was instantly better. No strength but that will come with p.t. I am so glad.

[dottie]

Hello. I have been on every pain killer there is. The only one that really works for me is Methadone. My experience: no side effects, quick and long-lasting pain relief. Very inexpensive. If I should have breakthru pain..I will take 2 Aleve. I have a sensitive stomach so i take all my meds with milk. I have been reading lately that some pain management Drs. are taking a different approach to the uses of methadone as a pain-relieving approach. I have been on this medication for about 7 years and I have stopped taking it for a spell to see if i would suffer from withdrawal...I was just fine. I hope this does not sound too arogant..but I really think that this drug should be at least considered if all else fails. I also realize that everyone is different. What might be great for one..might be the oppposite for another.

I would welcome hearing from others who have contemplated trying this drug 4 pain control!

Take good care..all!!

[wisewoman]

our paliative care docs use it but not on middle age relatively healthy brats like me. Thanks Dottie.

[krzyk101]

I have troubles with Tylenol based pain medication as well and have been going to pain management for few years now and I also take Methadone, and Morphine.

The medication that helps me the most however is a medication called (Brand) ROXICODONE or OXY-IR, and is basically fast acting and the generic is Oxycodone HCL, I am allowed to take I or II of the 15mg tablets every 6 hrs with a max of 5 per 24 hours as needed for breakthrough pain.

It has really been a great alternative to percocet as the roxicodone contains no tylenol or other medication with it, only oxycodone.

Wish you the best on your pain control.

[wisewoman]

Thanks for the info, having a flare up as I type.