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Posted 5/13/2016 3:02 AM (GMT 0)
I am struggling finding a good combo of pain meds, please help. I know everyone is different, but I still think others experiences can help.

I had surgery November 10th of 2015 for endometriosis. The surgeon did what is called "excision" surgery, meaning cutting instead of burning all the endo out. He took a big piece off of my bladder which has resulted in either nerve damage, or interstitial cystitis or they don't really know. Basically I feel a lot like I have a UTI burning, urgency all the time, feel like I've been kicked in the bladder and nothing except pain meds gives me a little bit of relief. I'm having other pains up by my back rib area too, and wondering if my ureter was damaged on that side during the surgery. I'm seeing my obgyn tomorrow and talking to him about it.

I have two kids and I need to be able to be functioning a little bit at least (driving). I haven't hardly driven since November
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So far I've tried Fentanyl, it only worked for about 2 days and then wasn't working, plus made me sleepy. I couldn't get off the couch, and I can't remember what other side effects I had.

I tried Opana ER which worked the best except it gave me a sunburn all over and body aches.

The one I have kept going back to is Morphine 15, but it makes me itch like hell, have rashes and bad anxiety, tired and scared to drive. I also have Oxycodone 20 mg and can take it up to 4 times a day. When I was on the morphine I was taking it still about 3 times a day. I just learned from this website today though that I shouldn't be having to do that. My pain dr. never said anything about it.

I had the best relief with the morphine/oxy combo but again, tired, headaches, scared to drive, itchy.

Is there something I can try that I will still be able to function/drive on? I can't get better when I can't hardly get myself to my appointments and have to rely on others to take me.

I also have amitriptyline and gabapentin which I haven't tried yet, but I'm going to I just don't know which one to try yet, so if you have advice on either of them.

My pain dr. who I see on Monday offered me Methadone, but I'm scared as hell to try something like that. I have people in my family who have been addicted to meth and it looks really hard to get off of.

That is the other thing, coming off the morphine didn't seem that bad. I did have very bad withdrawals in the morning though from both meds. Runny nose, feeling like I jumped out of a building and joints hurt etc.

Also I might be having another surgery here in the short future. Once you are on high pain meds like this, how can they manage your pain after surgery? I have a hernia which is causing problems and they might go back in and see if they missed something.

Thank you!
Posted 5/13/2016 6:03 PM (GMT 0)
Bump?
Posted 5/14/2016 12:15 AM (GMT 0)
How long have you been taking pain meds ? It sounds like you might be over medication. If the Morphine is Extended Released, you are only suppose to take one every 12 hours.
Posted 5/14/2016 12:44 AM (GMT 0)
When I was taking the morphine it was 15 my ER twice a day. Once in the morning and once at night. My dr said I could do every 8 hours or three times a day if need be, but I never did.

I asked her to take me off and try a different long acting med so she did and put me on 10 mg oxycodone er. I've only taken it 4 times and it gives me massive anxiety. I need to decide what to do by Monday when I go back in.

In addition to the morphine I am also prescribed 20 mgs of oxycodone short release and allowed to take up to four times a day. I usually only take it three times a day. After reading this forum though it sounds like I should only be having to use the morphine daily? Or another long acting med?

My question was maybe not that clear. I need opinions on long acting meds. Do you all drive? And function normally? That is what I need to be able to do. Maybe I will just ask for morphine again but try not to take the short acting meds. I have been though just because the pain is agony as I'm sure you all understand.

I had a ultrasound today and my dr physically saw my bladder moving on its own :$. I have several more tests coming this week and praying for answers besides just narcotics.
Posted 5/14/2016 1:42 AM (GMT 0)
I started on methadone in late February for peripheral neuropathy. It has changed my life for the better. I'm able to work again and wear my lovely collection of Stuart Weitzman heels. I have no side effects but am on a stool softener. Because of the long half-life of methadone, there is no high from it. Also, it needs to be titrated slow and low. Dose shouldn't be increased for about 5 days and the starting dose should be small. The only other opioid I've taken for an extended period of time is percocet. I def got a buzz from it plus my pain wasn't helped.

If you reply regarding methadone, be prepared for strong reactions as this drug is very controversial on this forum.
Posted 5/14/2016 1:54 AM (GMT 0)
Thanks for the reply platinum pixie. After seeing my new se today he thinks I have neurogenic bladder as a result of bad surgery in November. How is the gabapentin working for you? Or cymbalta? Those are meds he mentioned and amatriptalyn for the spasms.
Posted 5/14/2016 3:10 AM (GMT 0)
The meds have been a slow process since October of 2014. Initially the gabapentin made me sleepy during the day and I am an advanced practice nurse providing hands on care for patients so my PM had to make some changes. She has me take all of my gabapentin and cymbalta in the evening so I sleep through the side effects and that works for me. Both drugs have helped but in Dec/Jan my feet were really angry and it kind of snuck up on me. I had tramadol for break through pain and for several months hadn't needed it but during Dec/Jan I was taking it everyday and it was still very painful to walk. I took a medical leave to get it under control. Before cymbalta, I had tried a different antidepressant but can't remember the name right now. Last summer she added amitriptyline but I had significant GI side effects and had to stop it. Everyone is different and it can take many months to find the right cocktail. My doc started with gabapentin and added meds from there.

As far as future surgeries, once you are a chronic pain patient, ask for an anesthesia pain service consult. Depending on what type of surgery you are having, they may be able to do a nerve block to numb that part of the body. I'm a nurse anesthetist; it's common practice and beneficial for patients like us to get a nerve block if possible.
Posted 5/14/2016 3:42 PM (GMT 0)
Hello Glitterbuns & welcome to Healing Well. The dr that is taking care of you, is he/she connected with a womens health facility?If not, do yourself a favor & get referred to a group such as this. They deal with nothing but female issues & have a much greater success in helping women with female issues.

I too have to wonder if you are not being over medicated. The ER meds are rxd at 2 a day & BT meds now are set at 3 a day. The itching is just something that happens with some people as a side effect. Have you tried Benadryl for the itching? To answer your question about ER meds & driving, absolutely, we function on these meds & that includes being able to drive our vehicles. If a person is feeling loopy or groggy then they are on too much medication, you should not feel sedated.

If you have true nerve pain then you need something that specifically works on nerve pain like Gabapentin, Lyrica, Cymbalta or Amitriptiline to name a few. Narcotics have little to no effect on true nerve pain. Keep in mind on these meds it can take a couple of weeks to get past the side effects & longer to get you to the proper therapeutic level. If people will hang in there & give these medications a chance they often work very well. Most people complain that Amitriptiline is sedating & most find they can only take it at bedtime, so I want to give you heads up on it.

As far as Methadone goes, that is one medication to avoid if at all possible. They are currently trying to get it taken off as a pain medication. The reason being is the overdose rate is very high, the issues its causing from a physical stand point such as heart problems is at the top of the list. Methadone works on a different set of pain receptors it does not work like opioids at all. Most people that first start it think its the wonder drug because they are suddenly pain free they think, its like being given a false sense of pain relief. Like all medications there are tolerance issues & the dosage has to be increased.

Most people that take Methadone praise it to no end on what a wonderful drug it is until they have to go off of it. Thats when things crater, they are having heart issues, teeth have rotted out of their mouths, the withdrawal symptoms are horrendous & it can take months & months to try & taper off of it. If you will use our search feature located at the top & type in Methadone & read the hundreds of stories from members going off of Methadone will verify what I am saying about Methadone. Granted it can work great for pain but the luggage that comes with it is horrendous. By the time most people have Methadone recommended they are desperate enough to try anything & those very people are sorry they ever took it. I am afraid PlatinumPixie will be one of those casualties eventually.

Yes, you are correct about not having post op pain managed when having surgery after being on opioids. That is the biggest complaint we see with CPers that have surgery. Drs are not comfortable rxing extra pain medication therefore we are left to suffer through the pain. If it a type of surgery that a block can given thats fine but that block will not last all that long & will wear off. Also there are new prescribing guidelines drs are going by. This is why we tell people new to CP, not to count on pain medication being their only source of pain control. Drs are limited in what & how much they can rx these days.

Take care.
Posted 5/14/2016 8:04 PM (GMT 0)
Susie,

Thank you for the reply and info. So if opiodis work for me, does that mean my pain is not nerve pain? I get probably about two hours of level 3 pain with just oxycodone short acting, and if I didn't have it I'd be a level 7 or 8. When I have both pain meds morphine and oxy I was to the point I was feeling better and I thought I was recovering. I than came off the morphine and realized pretty quickly that was not the case. My PM dr said maybe if I only take oxycodone short acting I could drive. I probably can drive, but I'd only be able to be gone about an hour or two and then I get panicky if I'm not home where I can have pain control.

I'm guessing that after my testing they will want me to try gabapentin or the amitriptalyn which is fine I'm willing to do that and I hope it helps and I will have to use little to no pain medication.

The surgery they so far are saying I will need is a hernia repair but I don't know what kind yet. I possibly could have kidney damage from not having my bladder condition (neurogenic bladder) treated promptly. They are checking for that on Tuesday via ct scan and then other tests like urodynamics test will follow after that. From what I'm reading and have been told worse case scenario is that they remove my bladder completely and rebuild with a intestines, or they would divert my bladder with a stoma. I don't know what other things they might have to do surgery with like removing more endometriosis or not. I also have gastroparesis but thankfully that has not reared its head in a few months.

The other problem I was having was withdrawals in the morning, but I'm guessing this is a common scenario? When I would wake up in the morning my nose is running, and I feel like I jumped out of a building. That was with taking 1 morphine in the morning and then 1 at night plus the 3 oxys during the day.

We do have a women's center but my insurance doesn't cover it. I may still go there, but I really can't afford all the tests and stuff they want to do out of pocket. As it is I am already swimming in medical bills, but I'm sure you all understand that. When I see my ob again I'll see if he knows of any others, but when I did a search that was the only one I was able to find. It is at our state university.

I don't want to try the methadone, my instincts were already telling me no, so I am glad I asked. I also did research on butrans patch and that one sounds bad too. Should I just stick with the morphine/oxy combo and then try to take as little possible of oxy? The morphine was also making me really really depressed, like want to kill myself depressed. Could that be remedy with antidepressant? As far as I know there aren't any other options besides fentanyl, butrans, methadone, Opana which I'm allergic too and morphine right?

Thank you!
Glitterbuns
Posted 5/15/2016 3:32 AM (GMT 0)
Since you say you got so much relief it may very well not be nerve pain as they think. Opioids just do not work well at all on nerve pain. Hopefully by the time they are finished with the future testing your surgery will be a standard hernia repair. I think I would do some checking on the dr at the university just to scope the dr out & maybe go there for a 2nd opinion. I would sure get one.

Butrans is not a good pain reliever from what I have seen here from members that tried it. Fentanyl is a very strong pain medication that works very well. You have to avoid heat when using the patch, including hot showers. Heat causes the patch to release too much medication & then by day 3 there is not much left in the patch. That is just something that has to be watched. Have you tried oxycodone alone, because from what you are describing taking the two it very much sounds you are over medicated. It can be a real challenge finding the right medication & dosage. I am not sure about adding an antidepressant it may not be wise to add another drug like that. Amitriptiline may be taken at bedtime, it may the one to consider. Work with your dr & see what he can come up with. Just keep in mind with meds like Gabapentin & Gabapentin it takes a couple of weeks for any side effect to go away & then getting the right dosage down too.

Take care.
Posted 5/15/2016 2:11 PM (GMT 0)
Hey Glitterbuns.Everyone here is probably on different combinations,strengths,and other meds thrown in the mix.

It comes down to what works for you and if you have a Doctor that is willing to help you find that combination.

I thought Morphine was great for pain.And I felt safe with taking it because it's such an old medication.

At the peak,I was taking 180 mg a day,between the MSContin ER 30 mg x 2 a day and the Morphine IR 30 mg x 4 a day for BT pain.

I just try to remember that I'm never going to be totally out of pain.I just want to take a med that lowers the pain enough that I can have some quality of life.

Best of luck.

Post Edited (Mr.Tibs) : 5/16/2016 4:09:38 AM (GMT-6)

Posted 5/15/2016 6:44 PM (GMT 0)
Susie, I'm off morphine right now and have been for two weeks. We were trying oxycodone ER but I was only able to take it 4 times because of the intense anxiety it gave me. I've only been taking my oxycodone break thru's for two weeks. I think I will go back on morphine and reduce the amount of BT's that I am taking, or see if the Dr can recommend something else but not methadone.

Thanks for the info! This has been the 7 hardest months of my entire life.

Mr.Tibs before this surgery I was a functioning person. I did have chronic pain from endo, but it was never to the point I am now. I was mostly able to survive before with heating pads and a few short periods with narcotics when I had cysts rupture.

I don't think I've come to terms yet that this is my life now.

So far I think I have a really good dr. and that is the other reason I haven't gone searching. I've seen plenty of other people say even their PM dr wasn't willing to help and mine is. She even said I could go to CO and try medical MJ and she would give me a "stern" talking too, but I wouldn't be kicked out. I haven't tried it, because I don't know if I entirely trust her only having the power to not kick me out. I will check out the University dr though, I guess it won't hurt. The refferal to get in there takes about 4 to 6 months anyway.

What about demerol? They have given me that in the hospital before. I'm not sure if it can be dispensed for home.

Goodluck to you all!
Posted 5/16/2016 10:07 AM (GMT 0)
Morning.Demerol comes in 50 mg and 100 mg IR Pills under the name Meperdine.

I've only known 1 person that was prescribed it.I don't think it's widely prescribed.

Doctors are like everyone else.They usually apply to me and you what's worked on other patients in the past.

What seems to work for me is an even level.My worst is after I wake up.It's 4:57 AM right now.Took my morning IR pain med about 30 minutes ago.I'll wait til 7:00 to take my ER med.

I try to take it like I take my other prescribed meds.On a specific schedule.

Hope yo have a good day.

Take care.
.

Post Edited (Mr.Tibs) : 5/16/2016 4:12:26 AM (GMT-6)

Posted 5/16/2016 3:28 PM (GMT 0)
Glitter, my sister used Demerol for years as a last resort type of thing in getting her pain under control. Last year her dr stopped rxing it because she said its no longer available.

You could be one of these people that are just super sensitive to certain meds & there is always the possibility of problems with different fillers in medication.

If you feel your dr is trying to help you & you are happy with her stay with her. I sure would not be looking for a new PM dr.. Thats too risky. Yes, I have heard people bash their drs claiming they are not helping them & at the same time they are mad because the dr will not give them the medication they want & the amounts. Not saying this happens in every instance, just the same it does happen. Hopefully your dr can come up with something.
Posted 5/16/2016 9:06 PM (GMT 0)
You mention gastoparesis that is well controlled. I hope that stays the same, but it's one of those sneaky diseases that pop up when you least expect it. If you look at my signature you can see that I have some crazy gi stuff going on. Because of this, Fentanyl as a long acting med has been the best for me. I'm ok crushing up IR meds and using my J tube. Long acting meds cannot be crushed since they are designed to be broken down over time.

I highly recommend Fentanyl. I've used Butrans in the past, and I broke out around the patch. I do know several people who have found relief using it.

High doses of pain meds can most definitely effect pain levels after surgery. I had my first surgery when I was too young to remember. On average I have 3-4 surgeries/procedures a year, and multiple longterm admissions. This has been the case throughout my life. After each surgery, an active effort is made to lower pain med doses to a level where it is a tolerable level. If this is not done, pain control is difficult, if not impossible, to achieve when the situation arises. My definition of "tolerable" has changed greatly over time. The placement on the "rate your pain" line has been adjusted to reflect this new definition. Right now I consider a 5 to be tolerable and I'm able to be a good mom for my son. I would rank childbirth an 8, and my jaw replacement as a 9. I never use 10 because I know there is always a pain that will blow what I consider intolerable out of the water.

Anyway, my point is that every effort should be made to lower meds as much as possible, while being able to live your life. I'm not going to lie, it hasn't been easy, but the pluses way out-weigh the negatives when you know a surgery is coming.
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