Chronic Pain

Two years ago I had major foot surgery that required breaking my foot in two places and inserting pins. This was done as same day surgery and I was sent home a few hours after surgery armed with the standard narcotic prescription of Tylenol with Codeine and the directions to take them every four hours whether I needed to or not to stay in front of the pain and keep it under control. Part of the anesthetic used in the surgery was a block in the back of my leg so when I went home that was still working and I wasn't in any pain.

I followed directions explicitly including staying in bed, raising the leg and keeping ice on my lower leg (couldn't apply directly due to contraption on my foot). As the block wore off over the next 12 hours the pain started to mount even though I was taking the Tylenol with Codeine. I began to intersperse that with 800 mg of ibruprofen and that didn't do anything. By the next day I was really uncomfortable and called in to the surgeon who prescribed oral Dilaudid with the warning to take these exactly as prescribed as this was going to knock me on my butt (his words). I took the Dilaudid and had zero reaction. The pain was now at the excruciating level. I made it through the night and into the early morning (4am) finally calling back to the hospital on call physician to describe this out of control pain. He said there wasn't anything else he could precribe and I needed to go to my local ER. At 5 am on the 2nd day post op I had to get in a car and get to our local ER. I have never been in such pain. It is not a pretty site when a 40+ year old woman literally sobs and begs for help from her ER bed. The ER gave me Tergatol (sic?) via IV and bam, instant relief. They kept me there for a few hours in order to give me a second IV dose. The ER doctor then sent me home telling me to double the Dilaudid dosage but not to exceed the dosage or the timing as I could truly kill myself (Gee, thanks!!)

I have had since the age of 16 multiple orthopaedic surgeries for my right knee (remove cartiledge, ACL repair), both feet in the mid-90's and then my right foot again in 2006. I also had extreme pain with wisdom teeth removal. When I look back at my reaction to pain from these surgeries I realize that I never had any relief the first week of surgery and any pain relief I was getting was probably from Tylenol and Ibruprofen and not from the narcotic.

When I fedback my pain experience to my foot surgeon he intimated that I must have a history of IV drug abuse because those are the only patients he has ever had that do not respond to oral narcotics. I have never taken any drugs whatsoever in my life. I do not smoke or drink. I was very offended by his attitude since it intimated that I was lying to him.

I work with people in the genetics field and when I told them about my problem apparently there is a known percentage of patients who cannot metabolize oral narcotics and get the level of pain relief they need. Since I have no record of having a problem with any other medication taken orally it must be something specific to oral narcotics. I also respond to other delivery methods of narcotics such as IV and IM shots.I have never had a problem with any anesthesia used on me including general, twilight sleep, epidural, spinal or external blocks.

I am facing hip surgery at the end of March in which it is open ended as to what exactly will be done based on what is found and I am as you would imagine very worried about pain control post surgery. The hip surgeon has been told by me about my last experience and is scheduling me for at least a 23 hour admission post surgery. I've been trying to find a pain management specialist to visit prior to the surgery but the one clinic I found only makes appts by referral and appears to deal more with chronic pain sufferers than with patients in my predicament.

What I would like to know from your expertise in the area is:

How common is it not to get any pain relief from prescription narcotics when long term use or dependency isn't an issue?
How can I make sure the surgical support staff and nursing staff understand my problems and work with me for adequate pain relief?
Would a different delivery method such as taking it in liquid versus pill form help the situation? I understand that oral narcotics are formulated in such a way that they have two layers. The outer layer and the inner layer that has to be digested and absorbed into the blood stream. They are designed to be digested over time to provide a time released dosage to provide pain relief over the specified time. That is why it is dangerous to crush, bite or chew oral narcotics because you woukd get all the medication in one big dose which can be harmful.
What other delivery systems are available? The cat for goodness sakes can have a time release fentanyl skin patch post surgey.

Without being an expert I think I can't break down the oral narcotic through digestion and get it into my blood stream. Since IV and IM forms work it doesn't seem to be an issue of liver enzymes not being able to break down and utilize. If that were the case the other forms wouldn't work either.

This is probably also a problem that is coming to light with same day surgeries regardless of complexity. If I had the ability to stay in a hospital setting for a few days they would be better equipped to monitor pain. Once you are sent home with the prescription bottle there aren't a lot of alternatives if they don't work.

Any information that anyone can provide would be extremely appreciated. I am truly afraid of facing pain again and also afraid of future incidents that might put me in a position to need pain relief.

Dear No Relief,

I felt compelled to write to you since no one has replied to you yet there have been 62 views of your post at the time I had read your post. You have quite a complicated story and you pose many delicate questions that I cannot answer. I can only share your frustrations and maybe make some suggestions.

I live with chronic pain with my back. Read my posts and my profile then come back to this reply so you can understand where I am coming from.

It's very unfortunate that you are being accused of abusing meds. That's so unfair. As with most people who take ongoing pain medications, your body builds up a tolerance to the pain meds and it requires more of the medicine to get the same relief. Your body must need the medicine a different way since it requires an IV form of medicine. I find that interesting though since you have not been on narcotics such as morphine or oxycontin, except for dilaudid...just tylenol and codeine. I can't imagine that Dilaudid didn't do anything for you. That is what they were going to put in my morphine pump if I was going to go through with it. It is supposedly stronger than morphine. Yes it can kill you. Any of these narcotics can kill you if you od on them!! I currently take Kadian which is extended-release form of morphine. I hate it though. I can only take up to 60 mg two times per day and I don't get adequate pain relief with that dose. Anything higher than that and I go into a brain fog, forgetfulness, depression, and just want to sleep all of the time. It's horrible.

Perhaps a morphine pump would be a solution for your pain if you can't metabolize oral meds. There are MANY risks for this though so PLEASE be very thorough in checking them out. Personally, it wasn't for me. I don't know of any liquid narcotics out there that you can take but that doesn't mean that one can't be made for you at a compounding pharmacy. It would be wise to ask. Just think of those individuals that might not be able to swallow pills...what do they do! And as you mention, NEVER crushed these pills, you may very well die. This is what the street addicts do to get their high. If they're lucky, they live. In my area, two teens did this and didn't live to tell about it.

You need to find you a good pain specialist to help you with all of your questions. I am also switching because of several issues that I have had. Never be satisfied if he or she does not have YOUR best interest first. I wish you the best and will keep you in my thoughts and prayers.

SoBlest

Hello NoRelief
It's great to meet you and I sincerely hope we can help you in some way to ensure yourself some positive pain relief for your post surgical time of recovery.

From what I understood about your posts, it's just during your post surgical time of healing that your needing pain relief and your not normally one that has an issue with chronic pain after healing has went on.
I can certainly understand your worry & frustation with this, but I don't see any reason why your doctors cannot still make sure you achieve the relief, just like everyother patient. Your problem is not a real common one, but it's also not a "Never heard of that! Either."
I think if you made sure you had previously made arrangements, that they should be able to find a delivery system that's compatible for you.
Drug companies make Opiate pain relievers in many different forms. There is; Oral liquid, pills, patches, lollypops, rectal supositories, injectable, etc.
I do know a friend of mine that has problems with pill forms of pain meds and her doctor has even trained her to give herself an injection IM in her hip every 12 hours for her pain control. When my father was dieing of Leukemia, they used the oral liquid for his pain and I know for the very ill that cannot hold oral meds down, they also have a supository. Some of these meds are not commonly used for post op pain control, but if you cannot get relief from the regular tablets, they should be able to at least use a supository system, which If I could not get relief from tablets or orally, then I would use supositories if they were the only help.
One reason that I would think the supositories would be a possible dilivery form would be that these are not widely used or abused of a delivery system and I'm sure a doc would feel more apt to prescribe them over & above the liquid, injectable or lollypops, which would be easier for anothere to get a hold of and abuse, and are more commonly used for last stages of cancer and not for post op pain.
I would also wonder if your not able to metabolize the pil forms, whether you would be able to use the oral liquid either.

I hope you can contact your doctor and ask about some of these considerations. Just because you are a bit more difficult to relieve your pain, does not mean that you don't deserve pain relief and that there is not any other options for you.
If your doctor says oral tablets or there is nothing else, all he is truely saying is that he refuses to prescribe something else or he's not researched the subject or he thinks your trying to scam him or something rediculous.
If he lumps you in some rediculous group with drug addicts, then I would question his knowledge on pain control and personlly would not trust him.
Here are a couple of extra pain sites, groups that may also be able to give you some great information in what & how you should go about making sure your asured post op pain control without being treated as an addict or being insulted.
The American Pain Foundation; http://www.painfoundation.org/

The Pain Relief Network
http://web.archive.org/web/20060220221451/www.painreliefnetwork.org/index.html

If you don't find the correct helpful info in your search around the site, then please feel free and call them, they may even be able to get you in contact of the leaders of a POP (Power over Pain) group in your state.
There's a tremendous amount of pain conrrol information out there and a lot of people & groups willing to help educate you and try to help you to know what types of things to discuss with your doctors to make sure you get the pain control you deserve.

I really hope somthing here can help you in some way or another. I'm thankful you found us and I truely hope all the best for you. There are options for you. You deserve pain care.
God Bless! If you need help with finding any more sites or more info here, just let me know I'll do what ever I can to help you.
Betty

PS; I also believe that people who were once addicted to drugs, for what ever reason, when appropriate, they deserve pain control too. This is one of the important parts of pain advocacy. Just because someone made some bad choices in their life, does not mean they must suffer needlessly through post op pain or any type of painful condition on there own and without help. We all need to stand up for those who cannot stand on their own.