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Posted 2/5/2010 5:58 AM (GMT 0)
i just found this forum and thought i might be able to get some help with an issue i have been having.  First, a little background on me, I was run over by a truck about 5 years ago.  This caused major damage to my right leg such as broken femur, blown knee ligaments, shin and muscle sheered off the front of my shin, displaced kneecap.  Resulting in a titanium rod down the center of the femur, a couple of knee surgeries, skin graft on the lower leg.  During the healing process, part of my thigh muscle also turned to bone due to over calcification, which kind of feels like an antler grew off of the femur all the way to the surface of the inner thigh.  I also have almost no cartilege left in my knee and a lot of nerve damage in the lower leg.

Over the last two years, i have been on a multitude of medications to help with the pain.  Unfortunately, I have not had much relief at all.  the duragesic patches were a no-go because i never could get them to stay on my skin.  Other medications taken have been Oxycodone, Oxycontin, Opana, Percocet, and Methadone. I am sure there are one or two others that i have been prescribed that aren't coming to mind at the moment. 

Immediately after the accident, I was on Oxycodone and percocet for about 5 months or so.  At that time the meds worked just fine with no complaints.  Then for three years, I dealt with the pain hoping it would go away.  When i couldn't take it anymore, I went to a pain management doctor and we started the list of meds above.  The first we tried was the Duragesic - didn't work due to the patches not adhering very well.  Then we tried the Oxy and percocet because that had worked before.  However, this time they didn't.  Basically each medicine I have been on has worked great for the first dose, ok for the second dose, then almost no effect at all felt after that.  At first, i was still smoking and thought that that might be causing the meds not to have effect so I quit.  I figured once the nicotine was out of my system the meds would start working but that has not been the case.  I have change meds two times since then with the same result - first dose great felt relief, second dose 50% relief, 3rd dose and on almost no felt relief.

does anyone have any idea what could be causing this and what could help the meds work?  As of right now I am on methadone and opana and it feels the same as if i were to take a tylenol.  My family has suggested that maybe my tolerance has just gotten that high and i would agree with that if the meds had worked for weeks or months and then stopped but with the effects of the meds only lasting one or two doses I think it is something else.

Any ideas?  Your help is greatly appreciated.  Sorry for blabbering on, but I am at my wits end with this.

Posted 2/5/2010 6:54 AM (GMT 0)
I am a chronic pain sufferer myself so I literally feel your pain. Has your doctor ever mentioned trigger point injections, or sympathetic blocks? I have received both and find the combination of both medication and injections worked substantially better than doing either separately.
Posted 2/5/2010 9:15 AM (GMT 0)
Hi, Gator,
Welcome to the chronic pain forum of Healing Well. I'm so sorry to read of your accident and everything it's led to. This is a great support forum, and we share experiences, but we're not doctors so keep that in mind as you read any of our responses.

Have you talked with your PM doctor about this at length? It could be a tolerance issue, and some people also metabolize medications differently. I also know sometimes doctors have to get very creative with doses and combinations of medications, including things like anti-depressants and others to find what may be the best relief. Most of us never get complete pain relief, however, and have to learn to find the combination of medications as well as other treatments to keep the pain as low as possible.

TD79 mentioned injections, and those are possibilities. I don't know if you've ever seen a pain psychologist/therapist, but he/she could help you learn meditation and other techniques that again, aren't cures but when put together with other approaches can help some.

I wonder if there's another PM doc or teaching hospital near you that you could go to for a second opinion.

I'm sure others will be along later today to add some thoughts. Don't know if this is helpful, but still, I'm glad you found us.

And welcome to you, too, TD79!

PaLady
Posted 2/5/2010 1:19 PM (GMT 0)
The fentanyl patches ( some of them anyway) were notorious for not sticking or not sticking as well as they should until recently, when most all of the manufacturer's remade the design of the patch, so that most of them now look like a piece of tape, with the dosage written on them. I am assuming that you are a male.......if that is the case, did you remove the arm hair or chest/back hair before applying each patch? If not, that is probably one of the biggest reasons why they did not stick. Also where you put the patch makes a huge difference in whether or not it will stick.
The other issue with the meds not working for very long may be one of the dosage not being strong enough. Whenever you start a new medication, the dosage is usually at the low end of the dosage range from a previous med, this is due to cross tolerance issues, so the doctor starts you on a lower dose of the new medication to see #1, if you will get pain relief, and #2-to make sure that you aren't going to have too many negative side effects. The dosages usually need to be titrated up some to get the right amount of pain relief and a minimum of side effects such as sedation/respiratory issues.
As far as not noticably getting any pain relief from the methadone/opana combination-it may be that the doses are too low for you , or it may simply be that you don't realize how much pain relief the meds are giving you. It happens to alot of chronic pain patients- we think that a med isn't working as well as it once did , and decide to talk to our doctors about changing them, or go off them completely only to find that the medication was working far more than we thought it was.
As our bodies adjust to a medication or a combination of medications, our bodies tend to experience or adjust to the side effects, but we also loose that feeling that we often have when we start a new medication- where we have a noticable feeling of pain relief..
It happens to everyone who has been on meds for any length of time, after you have been on them for awhile, you don't get that feeling that you got when you first started them, so we tend to think they aren't working any more.
I wonder why you aren't on any nerve/neuropathic type pain medications such as Lyrica or Neurontin, Topamax, Cymbalta or another medication that has similar effect? If you were, you might notice that they help relieve the neuropathic pain some as well. One of the good things with methadone is that it is known for helping relieve not only mechanical pain, but neuropathic pain as well.
Sandi
Posted 2/5/2010 4:11 PM (GMT 0)
Update: I will try to answer some of the questions above. I am a male and did always shave the area the patch was to be placed and still couldn't get them to stay on. I received injections unto my knee once don't remember the name- the doc said it was made with gold and my copayment was over 300 for the three shot series. Those injections didn't work at all. Next month I am scheduled for a trial surgery for the pain pacemaker ( I forget the proper name ) that is to be implanted in the epidural area of my spine. That is supposed to be next month.

As far as the built up tolerance goes, if the meds had worked for several months, like they did after the accident ( 5 months with no issues or increases in dosage), then I would be inclined to agree with this. But imagine this - you take the first dosage of tour meds and you feel relief from the pain. By the third dose it is the same as taking a sugar pill. 15 to 30 minutes after I take the meds I feel absolutely no different than I did before. The times when the doctor ups the dosage I still don't feel a difference. It
is more like my body doesn't even recognize the meds are there.

I realize no one here is a doctor. I was just wondering if anyone had had a similar experience. My wife is calling the doc today to try and explain it again so I will keep you updated with how that goes. Thanks for the responses so far.
Posted 2/5/2010 4:58 PM (GMT 0)
Hi Gator and welcome to Healing Well. I am glad that you found us but always hate to see another person come along afflicted with CP. It is a tough life to live dealing with this monster every day. Its like a bad penny, it just will not go away. I do hope you will stay around and join the group as we always learn new things and get different ideas from other people's experiences.

 

I did look up opioid tolerance and yes there is such an animal out there. It made for some interesting reading that is for sure. You may want to google this and do some reading up on it. What PaLady said is so true as to how a person metabolizes medications can be a real big issue. Also what may help me may have no effect on you. There is more and more info out there now that shows pain medication has little to no effect on nerve pain either, I believe one of the other members had mentioned this in their post.

 

Are you talking about having a trial for an SCS to be implanted to see if that helps with the pain? Or have you already had the trial and this is the permanent placement? Which ever, good luck having it done, some of our folks on here have the SCS and it does help with their pain. From what I have read it is a matter of getting the unit fine tuned to your needs. Again welcome aboard and take care.

Posted 2/5/2010 5:40 PM (GMT 0)
I was taking Lortab 10's forever and was on the duragesic patch as well and the pain was still intense. I finally said something and the doc recently put me on Percocet 10's. The first one I took, I really thought that was really going to help. It hasn't. I've taken my meds this morning and nothing. It makes me think if I take two??? Though I often think I know more about how I feel than the doctor does, I also know that taking even one more could be one too many. My little brother lost his life thinking one more wouldn't hurt anything and would probably help. I don't know if he took one more or four more that morning,  I'll never know.  So, I would never suggest anyone take more than prescribed. I will say that at one point, I didn't take my meds for 3 days. I would never ever suggest that either simply because of the risk of withdrawals, but I did it and I can tell you that first pain pill was wonderful. I realized that, for me at least, I was doing what mrsm123 talked about. I didn't realize how much pain the meds actually helped until I didn't take them. I won't do that again. I will also say that my pm dr. hasn't been very helpful in getting the pain under any kind of control. Yes, some pain med is better than none, but are we so much less a person because we are in pain all the time? I don't think so. And I think we should at least have a decent quality of life. I never expect not to be in pain, but to be able to get up and go watch my kids at their concerts without tears streaming and having to leave early...that's just not the way things should be. Oh and by the way, I quit the duragesic patch under the supervision of my neurosurgeon.  While I wore it, I did so on my shoulder because it wouldn't stay on anywhere else. I put alcohol on the area then washed the alcohol off with soap and water and between the position and removing as much oil from my skin as I could, helped the patch to stay on. I think they highly advise not using the patch on top of a place you put alcohol without washing the alcohol off.  It makes sense to me anyway. Take care and let us know how it goes. I care.
Posted 2/5/2010 9:49 PM (GMT 0)
idea Hello there. How r u? I just now signed up for this forum and can really relate to u with the pain patch dilemna. I use fentanyl patches. I just started them a few weeks ago. 25 mcg. They r always falling off and its horrible. But they did help out the first 2 weeks. Now I feel as tho I've also built up a tolerance to them. So I guess its pretty common really. I'm new to pain management also. Hope things are better for you now...Makayla
Posted 2/5/2010 10:04 PM (GMT 0)
Hello Gater, and Welcome to the forum. After reading your post..I'm a thinking WOW!...the poor guy! I'm not sure if your PM has tried some of the meds in Liquid form, but I have been told that they may be a little more effective that way. Its just a thought, and maybe someone here can either confirm this as a possibility...or maybe something else for you.

Michael
Posted 2/6/2010 6:08 PM (GMT 0)

Hello Gator,

I used that handle (Gator) when I used to talk on CB radio back in the late 70"& 80" it brought back memories thanks smilewinkgrin about your sittuation I am in somewhat in the same sittuation I suffer constant back and shoulder pain, I am currently on Methadone as well. However, I believe it is your dosage that needs to be adjusted to a point where you are receiving a dosage that would actually block the pain receptors, in other words put them to sleep and you haven't received that dosage as yet. You mentioned Opana, what is that I have never heard of it all the others yes but not that one, is it something new?

Anyway, this is my theory on your problem your system is strangely addapting to the drug rapidly and like me it will be sometime until you receive the right dosage. I have been on this medication for sometime now so long that I am now wanting to reduce my dosage as I have been feeling strange and in the past like 4 years my hair has changed in texture all my hair, including my facial hair. I attribute it to the duration or time that I have been on said meds. I have asked that my dosage be changed and hopefully I will be able to seek another drug to handle my pain hopefully one that is not a synthetic opiate, like what I am on now.

I hope that I have been of assistance to you I understand the pain you are suffering as I have it myself only from different circumstances, I am a Vietnam Veteran and have wounds that still plague me thirty years later, infact it has gotten worse over the years. Hope to hear from you on your case and how it is going for you, hopefully my suggestion will be of some assistance?

Respectfully,

Mike1X  idea

Posted 2/6/2010 9:17 PM (GMT 0)
For you folks on the patches you can contact the company and they will send you plastic covers that will help the patch stay adhered. Back when I was on the Duragesics, I used Tegaderm to cover my patch with to keep it dry and intact The pharmacy ordered them for me. It is like the clear plastic covering used over the top of an IV. Hope this helps some of you.

Gator have you been tried on any of the medications used for nerve pain like, Neurotin, Cymbalta, Lyrica to name a few?

Cat I am sorry that you are suffering so. Any chance of changing PM drs since you don't seem to be getting anywhere? You know all the ramification of no taking meds as directed, you end up running short and then can't get a refill cause its too early, try getting a hold of your dr.
Posted 2/6/2010 11:13 PM (GMT 0)
Straydog, thanks for the message. I never overtake my meds is what I was trying to say. I wait it out. I've never run short on any of my meds because I know that first and foremost, it is me who will suffer and secondly, if they test me and I don't have opiods in my system a huge red flag will go off. I've thought about changing pm doctors, but after signing all the papers and having been with them for 3 years and all the tried and failed procedures, I'm kind of afraid to try anyone else. My sister (a doc) is wanting me to get in with a PM doctor friend of hers. I'm seriously thinking it would be a good idea. I am going to call my doc this week and tell her the meds are just not workingl Hopefully she's give me something else. Like I said, I just want a little quality in life, I don't think that's asking for the world.
I read what gator had to say and it makes me wonder if I've either built up such a resistance through Lortab and patches and now Percocet that I wonder if they can find anything that will allow me to go to the zoo for example, with my kids! Any and every idea is great for me and yes, I am seriously considering using another doctor. The actually "doctor" I haven't seen in 6 months! This is crazy. Oh for a laugh, one of the first times I went to pm, I saw a police officer walking up and down the waiting room and I was thinking, "Poor thing, and he must still be working because he has his suit on." Come to find out...he was working there! Apparently many of the patients sell their scripts or their drugs right there in the drive way!! I can't even imagine! I mean for me, I need the meds and I'm not selling, sharing or anything else! Call me naive or whatever, but that tripped me out!
Posted 2/7/2010 2:19 AM (GMT 0)
Cat,

 

I was not trying to imply anything about your medication, as you were the one that said you had or were considering taking an extra pain pill. I was simply reminding you of the potential problems with taking meds not as rx'd.

 

You could very well be tolerate to your meds you are current taking. It is not uncommon at all for this to happen. There are far too many medications to be tried out there so don't let yourself suffer any more than you have to. Yes, you are entitled to some quality life and that is not asking for anything out of the ordinary. Because we suffer with CP does not make us any less of a person.

 

If your current dr is not willing to change your meds up, then it is time to move on to another dr.. I have a pain pump and my prior dr for the last two yrs I was his patient refused to increase my pump or my BT meds. I had no quality life and I hurt 24/7. If I wanted to do something and I did do things, I did nothing several days in advance and then paid the price. But, in that two yrs I also became use to the pain too and that can happen. Not only was my pain under treated but as a CP patient I was also under treated. I have a new dr that is absolutely wonderful and very intelligent. She was shocked at how low of dose my meds were in the pump, she actually doubled my meds on the first visit.

 

Your sister may have the right idea and it may be well worth your time to see this dr, always be open to options. Some folks don't have much in way of options. Also, don't let the length of time you have been with your current dr be the deciding factor as to staying with him/her either. Sometimes we think we have to stay because we have been with them so long. Contracts are common with these drs, its a CYA thing as far as I am concerned, just like doing UA's its all part of the game. A cop in the waiting area, oh, now that is bad, lol. Wow, that is scarey.

 

CP is not a one size fits all type of thing. Sometimes drs try to make it seem that way, but it is very individualized and our treatment should be the same way. I don't want some dr treating me the way he did the person before me because our situations are totally different.

 

Take care and think about what your Sis is proposing.

Posted 2/7/2010 3:48 AM (GMT 0)
Hello Catz4! Well if your Dr or PM won't listen to your needs and you are suffering to the point that is is consuming your every thought..like so many here...I would take your sisters suggestion, and pursue a new PM Doc. Your sister being a Dr...I'm sure knows which one to go to or at least give a try. Let us know how all of it turns out, and I sincerely wish you the best, and remember is takes a while to find just the right combination of DR's and meds.

Michael
Posted 2/7/2010 6:28 AM (GMT 0)
Straydog, Oh dear. LOL! I did not in any way take anything you said wrong. I'm so glad people care; I think it's just wonderful being here. You'll get to "know" me as time goes on and realize what you said was no problem and was in fact something I'm going to think closely about. We are in a different thread so you didn't catch me mentioning that my little brother died over taking "one more". I don't know if it was just One or if he took Five more, whatever the case may be, he's gone and he told me against my pleading that he was going to up his meds. That was a Friday night and he didn't wake up Saturday morning. He was 30. My baby brother. Ouch. So, I know exactly what you mean and that is truly what I was meaning. Now, that's that and we are on the same page!! LOL! Thanks for giving a darn. about going to a new doctor, I just saw a new doctor within the group I go to. I'm going back to see if she's got the nerve to be bold and help me. If not, I'm going to let my sister get me in with this other doc. Now, Stray...in all seriousness, were you surprised about the Police Officer? You alluded to that, but I could tell if you were kidding or not. The reason I ask is that the PM is in a not so nice (and not terrible) part of Nashville. Is it not mandatory that a cop is at a pm clinic? He carries a gun and is a Metro Police Officer not a Barney Fiffe. That is something I'm really curious about! So, let me know about that because if the Police Officers aren't standard at PM groups, then that tells me there is a lot wrong with my pain management group and I need to get in a better part of town!
Thanks,
Posted 2/7/2010 6:35 AM (GMT 0)
Catz4,
No, it's not standard to have a police officer in the waiting room for a PM. Some buildings have a security guard, but you say that he is an on-duty police officer. That I would find unusual. I would ask the receptionist if that's standard for them, or if they've had some recent trouble. Police departments these days usually don't assign officers to a location without a reason. But it's not standard or a requirement, at least not to my knowledge. I've never seen one in any PM's office I've been to.

Sounds like you have some other options, though, and that's really a good thing.

Don't know if I've ever said hello to you, so please consider this a belated welcome!

PaLady
Posted 2/7/2010 7:19 AM (GMT 0)
Thanks PaLady and all!
I'm a bit "concerned" now! Yes, the Officer is an Officer not a SG! He wears his gun and vest and the works. I thought he was there because he was injured or something and I asked the nurse. That's when they told me no, he was there because people sell drugs in the parking lot "and such". And such what? Am I in danger?? I asked that and was assured I was not in danger. Hmmm..... Well, I wonder if it's because they have a pharmacy there. Regardless, I don't feel safe. Wait, I really want to hear about this. I would love to know how many people do and do not have a Police Officer in their PM group, but this thread isn't about me! It's about Gator and I am so sorry Gator if I ended up dominating this! Yuck on me. I'd love to start a thread about these issues with pm and the good, bad and ugly of what I've been through with them, but I've been trained so well by so many doctors for so long, that I am a bit timid doing so. Yes, my sister can get me into another pm doctor, but she doesn't believe in pain meds and when I called the guy's office yesterday (Friday), they don't prescribe! Figures. Do I go and let them do all the procedures that haven't helped so far?? Anyway, Gator I think we all have our issues and none of them are easy fixes. I would advise to download the charts at the beginning of this thread posted by Chutz. I've been using them the past 2 days and I'm going to call to get into my pm early. Take care and know there are lots of people who care.
Posted 2/7/2010 7:59 AM (GMT 0)
Thanks for all of the responses. I am going to try and answer some of the questions. I have tried Lyrica but all it did was make me really sleepy with no noticable reduction in pain. I finally admitted to myself that I am depressed so the doc gave me a new script for that that I started today. It seems odd but I think those meds might be helping the opiates to work better. I know they aren't in my system fully for another week or two but I did feel a little bit of relief today - not much but I am grateful for anything at this point. I am looking forward to my trial implant next month. Hopefully it will help with the pain and I can have it permanently implanted.

Mike - Glad I could help you think of better times. I got the name back when I was at a federal academy because my distance run times were terrible but I have always been a great swimmer. So I got the name gator because I am slow on land and fast in the water. I am even slower now. Sorry to hear about your circumstance but thank you for your service. My father was over there too. He came back with similar problems and four purple hearts.
Posted 2/7/2010 8:20 AM (GMT 0)
Gator098,
I take it you received an Rx for an anti-depressant and yes, they can have a positive synergistic effect with pain meds. - especially certain ones. Cymbalta is the newest one used for depression and pain, but older anti-depressants like effexor, or even the SSRI's like prozac can help. And most of us are depressed when we have CP for physiological reasons as well as psychological. I take effexor myself, and many of our members take anti-depressants along with pain meds.

I hope your trial works out well for you!

PaLady
Posted 2/7/2010 9:36 PM (GMT 0)
Gator depression is a part of CP as far as I am concerned. They just seem to go hand in hand. I hope your medication will help you out. I would be down in the dark hole if I did not take something for it. It helps smooth out my rough edges.
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