How much more time should I give fentynal

Hi Kt, all I keep coming back to is the thought that if 150 mcg of fentenyl and b/t meds on board and your still having that much pain? There's a good chance your having rebound pain from the high amounts of opiates, your tolerance is shot to #*&#, or your not metabolizing the meds, or your expectations for pain relief is too great.

What other meds and modalities are you using in conjunction with the fentenyl to aid in lowering your levels of pain? Your saying your getting very little to no relief? What's the actual baseline of your pain and the percentage your dropping with the fent and b/t meds onboard? How much pain relief are you expecting? All of it, half?, 30%?

Many time's many of us have to drop down to virtually no meds, or actually none to evaluate what pain levels we're at in reality, see if rebounds occurring or simply make a new baseline or starting point on the tolerance issues. Many Drs support "drug holidays " many dispute its importance but personally I've seen 1st hand it's benefits!

As for metabolism, are you using lotions, creams, sunscreen? Anything at all on the skin?

Have you checked drug interaction to make sure nothing your taking or ingesting is reacting with the fentenyl, lowering blood levels? Food and vits, supplements,sports drinks, energy drinks, all need to be entered in your search criteria.

You definitely need to resolve this as you may remain a CPer for life and at those amounts of opiates not working now imagine 10 years from now?

I agree w/ above posters - is a pretty high dose you are using - not to feel relief must be so frustrating!!

However, please talk to your prescribing doctor, pharmacy AND research online IF you consider discontinuing the fentanyl patch for a reset as suggested.

Pretty sure it is not advisable to stop cold turkey unless you have bad reaction - probably has that info on the insert. I am not a doctor- don't think any of us on this forum are, though are some nurses - so check everything out with YOUR medical professionals !! We DO have that first hand experience.

I have found (some) people provide advice based on biases not fact.. even some ' medical professionals ' think pain is not a valid reason for opiods, etc. !! Unfortunately . If you feel 'disapproval', please keep asking others 'til you feel comfortable.

As another person in pain I hope you continue your search for pain management.
Carefully!

We all deserve a quality of life that allows us to feel joy.. realizing that - that I could not feel joy, could not smile when I looked at someone I love - is when I let myself 'explore' these more potent pain medications.

Happy holidays

Fentanyl is kind of considered "tops" when it comes to pain relief without an IV.

So in my opinion, your best bet would be to taper down from the Fentanyl, and try going a week or two without any pain meds at all, if you can stand it.

If the pain is being magnified by the high dose of opiates, then in theory, giving your body a break could actually reduce the amount of pain you're feeling.

Also, not taking pain meds for a while allows your body to readjust how it experiences pain, and you'll be able to find out what your pain actually is.

Taking pain meds for a while takes away our body's ability to handle pain effectively without them, so the pain we feel between doses is actually usually MORE than the pain we would feel if we weren't taking any meds at all.

A break would reset the receptors, and when you started the medication back up again, your tolerance (hypothetically) should be decreased, so you could take a lot less meds than you do now...AND they would work better.

Out of curiosity, what other meds have you taken other than Fentanyl? And what is your break through med?

Kt thanks for more information! I asked about lotions etc because sometimes if your using some types on your body they can actually decrease the absorption and metabolism of patches. Any of them not just fentenyl!

We were not talking about going cold turkey off your meds and more along the lines of a protocol you and your Dr workout.

I dont know if you kept up with my methadone thread or not but I came off after 13 yrs with hardly any w/d effects. Thanks to a great Dr who was knowledgeable and cared enough to not allow me to suffer.

I used Butrans and clonidine, others use Subutex since you cant still use b/t meds with them.

Even though your tolerance is high the dangerous effects of opiates and especially fentenyl are still there. I would be worried that doses at those amounts could cause respitory problems to occur and even death. That's surely a scary thought when you have a child that needs you.

So if you want to attempt to back down to see if rebounds occurring and to reset everything tell your Dr and explain why you cant be laid up with w/d symptoms . Ask him to work with you to assure you have the best and safest chance at success!

Ktk81,

Thanks for sharing more about your situation. There are bits and pieces that remind me of my own pain journey..... I wish I wasn't so tired or I would share the things - in particular - that remind me of my own situation.

Shorter version, I had many young children. Pain issues that started and were out of control. Wonderful doctors - but because my pain was so high, they just tended to throw more narcotics at me....... saying the same thing, that I had an unusually high tolerance to meds, on and on. The problem was........ even on absurdly high doses of opiods - my pain was extremely high.

It's a long story re: the "whys" of getting off almost all of my meds. It involved a move back here from Colorado (we truly loved it there, but I was on oxygen by the time we left); finding a new Pain Clinic...... and then, above all, having a "surprise" twin pregnancy and having to (and wanting to) get off almost all my meds.

So - that's the short version, lol - and I would NOT recommend any of those steps to reset your receptors, haha = (though it all worked out, there are much easier ways).

But.... I think the other posters are really onto something....... and my post/experience is another vote in agreement to what's probably going on with you. Huge tolerance, rebound pain, etc.

Just some more thoughts: You wrote: "I don't know if I am strong enough to handle my pain without meds or care for my son." I understand that worry completely. But just food for thought: 1) As the others mentioned, you aren't going to cold turkey off all of the meds, so you will still have meds on board and 2) I think many moms really underestimate themselves in the strength department. You've been caring for him on a daily basis.... despite some big health/pain issues........ and - if the meds aren't working for you now - tapering slowly down isn't going to be a huge change - do you know what I mean?

But it needs to a taper down agreement between you and your doctor. I did a 3 month taper down....... didn't have any real w/d symptoms........ but you could, in theory, go even slower (I did it like that because I was pregnant).

Anyway..... I could go on and on. But I'm living proof that receptors and tolerance CAN be reset. I went from being on 600 to 700 mg of morphine (or equivalent - adding in the dilaudid, fentanyl, whatever else that I was presecribed). I was on ALL of that.... still about a 7 or 8 on the pain scale (out of 10)..... still in tears daily. Etc.

Now? I'm stable for the most part. Take oxycontin 30mg, 3x daily. I have 2 different BT meds - 1 for "normal" BT pain and one for times when it's severe. I use a muscle relaxer and nerve med. But - again, it works. I rotate my BT meds every 4 to 6 months. Changing it seems to utilize different pain pathways, instead of just upping my dose and adding to my tolerance. Add in many other things - like trigger point injections, more exercise (just walking, but it's something). I've also changed my attitude about everything. I've lowered my expectations drastically - as to what I expect from pain management to what I can realistically can do with my children. But that's a whole other post for another time. lol.

Point is: it can be done. If 150mcg of fentanyl isn't working - there's an issue somewhere - and I think there's much evidence that points to a huge tolerance created by going too high on narcotics and rebound pain issues (basically creating a opiod induced hyperalgesia. Here's a link for more reading. Side note: I used to hear ths term and think "But my pain is REAL". Hyperalgesia is still VERY real pain.)

www.integration.samhsa.gov/pbhci-learning-community/Opioid-Induced_Hyperalgesia_Article.pdf

Wishing you success and pain relief! If you have any specific questions, please feel free to ask. --Tina

Tina - your responce has me in tears... I know the fentynal is helping some just not to my expectations. I also know my dose is high enough to knock a linebacker on his butt. Lol. Can we e-mail privately? Is that allowed? I am the oldest of 3 kids. By the time my mom had the youngest her chronic pain had her in bed much of the time and me raising my youngest sister. I never want my son to see that. I never want him to think mommy doesn't love him because she hurts too bad to play with him. I just want my life back. But what I'm doing isn't enough. I too try to walk when I can, use ice daily, p/t as insurance allowed, orthotics ect ect... Please let menknow if we can e-mail privately and how to go about that if we can and you want to. Thank you for understanding and taking the time to respond. I will look into that link.

Ktk81,

My email is listed in my profile.... feel free to email. I'd be happy to talk more about some of this offline... I do understand not wanting to put everything out on an open forum. That said --

--I'll respond as soon as I can. Eight kids leaves me not much time to breathe on most days, but I do my best, lol.

--Second, by continuing most of the discussion on the board, you never know if another mom (or anyone, actually) will read this and see herself in the description. You know what I mean? Again, I know there are some details better said in private....... I'm just saying that some of these conversations are useful and how we all learn from one another.

There are many things that I'm not able to do with my kids - in terms of physical activity. I have a disabled parking plaque. I have to schedule in rest time for my health issues. On and on. Even my 3 year olds know that mommy has times that I'm sick (I have a port; they go with me for my infusions, sometimes..... or I'll have a down day where I do spend a good chunk of the day on the couch, etc).

I understand what you are saying, I do. But, for me - and this is only what's worked for my kids and our life - I can't hide my health/pain issues. It's too much a part of my life -- my ups/downs; taking my daily meds is a feat in itself, lol; going to the doctors; using the disabled plaque; etc etc. That said, they know I push myself as much as I can............ and that my health issues have NOTHING to do with them, how much I love them, etc.

I think kids are resilient too.... much more than we give them credit for. Kids see your love for them..... even if you are just snuggling in bed with them; reading a book; coloring together; etc. Sometimes, when I'm sick - we build a "fort" (ie - couch cushions and blankets) and lay there instead of bed.

I think we owe it to our kids to seek the best possible treatment that we can for our health stuff.... and push onward for them. That said, I'm not going to be the person I was when I was 25 and before the bulk of my health/pain stuff hit. But - by accepting the new me (even with my limitations/adaptions/whatever you want to call it) - I'm happier....... and it makes me a better mom because I'm not worried about all of that.

It sounds like you had to grow up really quickly - because of the issues your mom had...... and essentially become a "parent" to your sister. My encouragement would be to not translate the stuff you went through as a child - onto you and your child. It's a different circumstance...... and it sounds like you learned enough from your own experience to change things up enough regarding your son.

Anyway, it's late and I'm rambling. Feel free to email! lol...... What I was essentially trying to say in a VERY long winded way - you sound like a very loving mom........ that just needs to take some of the pressure off of your shoulders, especially concerning preconceived "expectations". Just do your best with your son..... show him love..... and you both will be ok, I promise!!

--Tina

Hi KT, my daughter was 7 months old when my chronic pain journey started and I, like the ladies about me, have not his my condition from my kids. My son was ten and he's had to be a big help but he doesn't look at it as a punishment or that I don't love him as much. I haven't been able to carry my daughter since she was one and her had to pick her up when mommy couldn't... Cook meals when mommy has had surgery and things like that. My daughter and I have a code word for when I'm not feeling my best. When Mommy has boo boo belly she knows she has to be soft and gentle with me. She'll happily play on one side of my king size bed while I lay in the fetal position on the other side. She'll watch movies in bed with me and things like that. One of the reasons that I am upfront with her is because I want her to know what Mommy's mediations looklike. She knows if she finds a patch somewhere (like it ddidn't flush in the toilet or what have you) to find me immediately and not to touch it. She also knows what my pills look like so if she finds one she knows its not candy and to find me or her brother for assistance.

You sounds like a wonder*** and caring mom. Try not to let the resentment you felt growing up scare you from having open dialogue with your little one. Ifthey know what's going on they can ask questions and not be left to wonder what's wrong with mom.

Good luck to you! I hope you will get relief soon. I know how hard it is to be mommy in pain.

Lindsey

I use promethazine (the generic of phenergan) to combat the nausea I get from taking pain meds.

I haven't experienced any noticeable difference in the effectiveness of my pain meds (good or bad) when I take the promethazine with them.

I've heard that it can "boost" the effect of some opioids, but I don't know anything about it. I don't know if it depends on the type of pain med, the dosage, etc.

BUT...

I would be really really careful of trying to boost the Fentanyl. There are so many variables that effect how much Fentanyl your body absorbs from the patch at any given time. If you add the phenergan to the mix trying to make it work better...you could inadvertently put yourself in a bad spot without even realizing it's happening until it's already...well, happening. If that makes sense.

Im so sorry for all the grammatical and spelling errors in my post! I was writing from my phone at the emergency room with my son (wrestlingiinjury). I'm surprised you even got through all that!

I'm glad you and your doctor and hubby have decided to give your patches more time. It's really made a big difference for me. My pain levels are the lowest I have experienced since this pain journey of mine began. I'm also hapoy to hear that you are cutting down on your BT meds! That's progress! Keep us posted!

Linds, is your son ok?! I'm really glad we decided to give the patches more time as well.

Christina, good luck on your drug holiday. I hope you have amazing pain coverage when you start back up.

Thanks Vickie. :)