NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Switching from BuTrans patch to ER Morphine (https://www.neurotalk.org/peripheral-neuropathy/231048-switching-butrans-patch-er-morphine.html)

St George 2013 01-13-2016 10:24 PM

Switching from BuTrans patch to ER Morphine
 
Hello everyone :)

I did the SCS trial and it's not for me.

We discussed other options and have decided to switch me from BuTrans pain patch 20 mcg/hr to extended release Morphine.

He's titrating me down from BuTrans 20 to 10 mcg/hr. I will start my first 10 patch tomorrow and will change them weekly until I see him again on Feb 8th. At that time he will take me off the BuTrans 10 and put me on ER Morphine.

Along with the BuTrans I take oxycodone 10-325 up to 3 a day and I usually have to use 3 now. I will also be able to take the oxycodone with the Morphine.

Since the only other pain med I have tried is hydrocodone I/we think it's time I tried something else. I believe I've read of a few others on here that take the combo of ER Morphine and oxycodone and it has helped them quite a bit.

I have never reached my initial goal of being able to cook, clean my house and grocery shop. This May it will 3 years since this ugly SFN monster raised his head and changed my life forever. I know I have to keep pushing to try and find something that works for my pain.

My Bubba had been gone 4 1/2 months now and I know he would want me to fight this with all I have. It was so much easier fighting when I had him by my side.

I was finally able to clear out a corner of the bedroom where he had spent his last month. I'd just thrown things in that corner for over 3 weeks in August. I shed a lot of tears while sorting it all out but I did it. It was just a small thing but he would be proud that I was able to do it.

I just wanted to share with y'all my next step in my SFN journey. Wish me luck and I'll let you know how it goes for me.

Take care everyone :)

Debi from Georgia

Cliffman 01-13-2016 10:35 PM

Quote:

Originally Posted by St George 2013 (Post 1193123)
Hello everyone :)

I did the SCS trial and it's not for me.

We discussed other options and have decided to switch me from BuTrans pain patch 20 mcg/hr to extended release Morphine.

He's titrating me down from BuTrans 20 to 10 mcg/hr. I will start my first 10 patch tomorrow and will change them weekly until I see him again on Feb 8th. At that time he will take me off the BuTrans 10 and put me on ER Morphine.

Along with the BuTrans I take oxycodone 10-325 up to 3 a day and I usually have to use 3 now. I will also be able to take the oxycodone with the Morphine.

Since the only other pain med I have tried is hydrocodone I/we think it's time I tried something else. I believe I've read of a few others on here that take the combo of ER Morphine and oxycodone and it has helped them quite a bit.

I have never reached my initial goal of being able to cook, clean my house and grocery shop. This May it will 3 years since this ugly SFN monster raised his head and changed my life forever. I know I have to keep pushing to try and find something that works for my pain.

My Bubba had been gone 4 1/2 months now and I know he would want me to fight this with all I have. It was so much easier fighting when I had him by my side.

I was finally able to clear out a corner of the bedroom where he had spent his last month. I'd just thrown things in that corner for over 3 weeks in August. I shed a lot of tears while sorting it all out but I did it. It was just a small thing but he would be proud that I was able to do it.

I just wanted to share with y'all my next step in my SFN journey. Wish me luck and I'll let you know how it goes for me.

Take care everyone :)

Debi from Georgia

Hi Debi,

I truly hope the medicine changes work for you and so sorry to hear of your loss.

Please keep us informed about your progress...I'm praying you will meet your goals.

All the best to you,

Cliffman :)

en bloc 01-13-2016 10:59 PM

Debi,

I have tried various medications over the 19 years of my PN/SFN and joint pain from Sjogren's. I can tell you that the Fentanyl patch is stronger the BuTrans patch (they are different class/schedule) and you may find it is more helpful. The pharmacist (that is a part of the my pain mgmt clinic) told me that Fentanyl works better on nerve pain than oral oxy & morphine meds...and he was correct. Just thought I would share this, in case you are still considering options. Patches are so much easier to use and you don't have the daily peaks/valleys of pill mgmt (which still come with ER meds).

I wish you luck and hope you get relief soon.

St George 2013 01-13-2016 11:17 PM

Thank you en bloc :)
 
Quote:

Originally Posted by en bloc (Post 1193130)
Debi,

I have tried various medications over the 19 years of my PN/SFN and joint pain from Sjogren's. I can tell you that the Fentanyl patch is stronger the BuTrans patch (they are different class/schedule) and you may find it is more helpful. The pharmacist (that is a part of the my pain mgmt clinic) told me that Fentanyl works better on nerve pain than oral oxy & morphine meds...and he was correct. Just thought I would share this, in case you are still considering options. Patches are so much easier to use and you don't have the daily peaks/valleys of pill mgmt (which still come with ER meds).

I wish you luck and hope you get relief soon.

Thanks for the info. I did not know it worked well for SFN. Good to know.

I'm being a little selfish in not switching to another patch. I am having an above ground pool put in this spring because it helps me so much with the SFN. That's about the only exercise I can handle. I use a donut float :eek: and am able to exercise my legs and arms without touching the bottom (which would kill my feet). Because we will be using the pool everyday I'm afraid to use another patch right now. It also does not need to be exposed to the sun. I use the clear covers over my BuTrans patch but it still feels wet under the patch when I take it off. Not sure if it's water or sweat so I've always wondered if I was getting the full effect of the patch.

Does that make any sense ?

I know Bubba would be thrilled that I was putting this pool in for myself but I still feel a little guilty about it.

Debi

en bloc 01-14-2016 10:33 AM

Makes perfect sense!! Let's hope you get good results with the ER Morphine. Keep us posted.

bluesfan 01-14-2016 11:16 PM

Hi Debi

Wishing you all the best with the transition from Butrans to your new meds. Hope you get some improved pain relief - you deserve it after everything you've been through . . . don't feel guilty about getting the pool - I'm sure Bubba would have put one in for you before if he'd been able to - and he'd be the first to say if it helps ease your pain then do it! Roll on spring. :)

St George 2013 01-15-2016 01:36 AM

Quote:

Originally Posted by bluesfan (Post 1193356)
Hi Debi

Wishing you all the best with the transition from Butrans to your new meds. Hope you get some improved pain relief - you deserve it after everything you've been through . . . don't feel guilty about getting the pool - I'm sure Bubba would have put one in for you before if he'd been able to - and he'd be the first to say if it helps ease your pain then do it! Roll on spring. :)

Awwww.....thanks bluesfan :)

Debi

St George 2013 01-25-2016 09:36 AM

Update-Good morning Everyone
 
I'm 3 days in on my 2nd 10 mcg/hr BuTrans patch.

I started getting an earache early last week and finally broke down and went to the dr on Saturday morning. Dx: Sinus and ear infection.

I can't remember the last time I felt THIS bad ! Because of the infection I have no idea what is related to the infection and what to withdrawal from titrating down on the BuTrans.

I was finally able to get out of bed late yesterday afternoon and shower. This morning I feel like I'm on the road to recovery thank goodness.

We'll see how it goes from now to Feb 8th on this 10 mcg/hr patch.

Thanks to anyone reading this :D

ps....why do dr's insist on giving antibiotics that are linked to neuropathy ? I have severe SFN with no A or C fibers left in my feet per biopsy. He gives me Cipro after I specifically asked him NOT to give me any antibiotic linked to neuropathy. Vent over :)

Take care everyone.

Debi

Cliffman 01-25-2016 09:59 AM

Quote:

Originally Posted by St George 2013 (Post 1195415)
I'm 3 days in on my 2nd 10 mcg/hr BuTrans patch.

I started getting an earache early last week and finally broke down and went to the dr on Saturday morning. Dx: Sinus and ear infection.

I can't remember the last time I felt THIS bad ! Because of the infection I have no idea what is related to the infection and what to withdrawal from titrating down on the BuTrans.

I was finally able to get out of bed late yesterday afternoon and shower. This morning I feel like I'm on the road to recovery thank goodness.

We'll see how it goes from now to Feb 8th on this 10 mcg/hr patch.

Thanks to anyone reading this :D

ps....why do dr's insist on giving antibiotics that are linked to neuropathy ? I have severe SFN with no A or C fibers left in my feet per biopsy. He gives me Cipro after I specifically asked him NOT to give me any antibiotic linked to neuropathy. Vent over :)

Take care everyone.

Debi

Hi Debi,

Sorry to hear about the earache. I think a lot of doctors rely on "Cipro" as their go to antibiotic in most instances. For example every time my Mother has an urinary infection her GP insists it's the only antibiotic that will work, perhaps that's true but I question it.

If you don't mind my asking what type of side effects (if any) have you had from the oxycodone 10-325. My pain management Dr. told me they it does not work well on nerve pain but obviously it does in your case. I've reached 1800 mg of Gabapentin and it's not helping much with the pain.

Cliffman :)

St George 2013 01-25-2016 10:22 AM

Hey Cliff
 
Quote:

Originally Posted by Cliffman (Post 1195420)
Hi Debi,

Sorry to hear about the earache. I think a lot of doctors rely on "Cipro" as their go to antibiotic in most instances. For example every time my Mother has an urinary infection her GP insists it's the only antibiotic that will work, perhaps that's true but I question it.

If you don't mind my asking what type of side effects (if any) have you had from the oxycodone 10-325. My pain management Dr. told me they it does not work well on nerve pain but obviously it does in your case. I've reached 1800 mg of Gabapentin and it's not helping much with the pain.

Cliffman :)

You are probably right about the Cipro and I'm allergic to Penicillin so that may be why he gave me that.

At first I was on hydrocodone and it helped. Then when I went to the pain mgmt. dr and he put me on BuTrans he had to switch me from hydrocodone to oxycodone because he said hydrocodone doesn't mix with the BuTrans patch.

No side effects from it other than having to take a stool softner maybe once a month if that. I guess I'm lucky on that end :eek:

And yes the oxycodone does help me. I can take up to 3 a day and most days I have to use the 3. Not sure why your pain mgmt would say that. Sounds more like my neuro talking :rolleyes:

When I was just going to my PCP and a neuro the neuro would not prescribe me any type of pain meds...I had to get them from my PCP and my neuro wasn't too happy about it but it was helping me.

I'm also on 1800 mg of gabapentin. That's my personal limit with that drug :)

Does your pain mgmt. dr not give you anything for pain ?

Debi

Cliffman 01-25-2016 10:56 AM

Quote:

Originally Posted by St George 2013 (Post 1195422)
You are probably right about the Cipro and I'm allergic to Penicillin so that may be why he gave me that.

At first I was on hydrocodone and it helped. Then when I went to the pain mgmt. dr and he put me on BuTrans he had to switch me from hydrocodone to oxycodone because he said hydrocodone doesn't mix with the BuTrans patch.

No side effects from it other than having to take a stool softner maybe once a month if that. I guess I'm lucky on that end :eek:

And yes the oxycodone does help me. I can take up to 3 a day and most days I have to use the 3. Not sure why your pain mgmt would say that. Sounds more like my neuro talking :rolleyes:

When I was just going to my PCP and a neuro the neuro would not prescribe me any type of pain meds...I had to get them from my PCP and my neuro wasn't too happy about it but it was helping me.

I'm also on 1800 mg of gabapentin. That's my personal limit with that drug :)

Does your pain mgmt. dr not give you anything for pain ?

Debi

The only drug the pain management doctor suggested was Nortriptyline, which my Neuro could have easily added. Plus, it will take 2 to 4 weeks to work. It makes me feel spacey and drugged up during the day and I'm only on 10 mg. He also is working on a topical compound that I have not received yet. Frustrating because the pain is overwhelming most of the time.

Cliffman :)

St George 2013 01-25-2016 01:08 PM

Cliff
 
Quote:

Originally Posted by Cliffman (Post 1195429)
The only drug the pain management doctor suggested was Nortriptyline, which my Neuro could have easily added. Plus, it will take 2 to 4 weeks to work. It makes me feel spacey and drugged up during the day and I'm only on 10 mg. He also is working on a topical compound that I have not received yet. Frustrating because the pain is overwhelming most of the time.

Cliffman :)

I don't have any experience with pain mgmt. dr's because I've stayed with the first one I saw because I liked him and his staff so much.

I agree with you that your neuro could have gone through those types of meds with you before sending you to pain mgmt. I'm sure you have told them how bad the pain is ?

Maybe he's ultra conservation on starting pain meds ?

I don't get 'high' on any of my pain meds except when I first started the 5 mcg/hr BuTrans patch and I was pretty 'high' for a few hours.....my daughter and son in law thought it was funny :D But after that it never bothered me again.

I actually used this forum when I was talking to my pain dr about something new I could try. I think there are a few on here that the combo of Morphine ER and oxycodone works well for them. He totally agreed with my suggestion.

My opinion is (for what it's worth) is that he start you out on 5 or 7.5 mgs of oxycodone or hydrocodone and see if it will work for you. As we all know on NT everyone is different but you won't know unless you try it out.

If he keeps on like this you may have to look for another pain mgmt. dr as frustrating as that can be.

I've heard the compound creams can work very well. I only tried the one with the pepper stuff in it sold at the drugstores but I would not even feel the heat of it. I'd just slather it on until I realized my feet were worse instead of better. That may be because I have to use ice and not heat on my feet.

Debi

St George 2013 02-09-2016 11:08 AM

Update---Saw my pain mgmt dr yesterday :)
 
Hey my friends :D

First......my experience the last 3 weeks after reducing my BuTrans pain patch from 20 mcg/hr to 10 mcg/hr.

I put the 10 patch on on a Thursday. Didn't notice any change until the next Monday when I started getting sick (sinus/earache). When Saturday came I was in the dr's office with a fever and feeling pretty bad. Dx was sinus/ear infection and he prescribed an antibiotic. Over the next week I honestly thought I was going to die a day or two when I was hurting so bad.

So the first 2 weeks I have no idea what was withdrawal and what pain and feeling badly was coming from the infection.

This past week. Infection has mostly cleared up and I'm feeling ok. The pain has been sharper and I've had more pain in my arms than usual. My mouth/teeth were also hurting me more than normal.

When I saw my pain mgmt. dr yesterday I had been on the 10 patch for 3 weeks and 4 days.

He prescribed me extended release morphine 15 mg and reduced my oxycodone from 3 a day to 2 a day. He explained that the morphine is much stronger than the BuTrans patch......I thought it was the opposite. We decided I would take my patch off this morning and take my first new pain pill.

He also said I need to take the morphine as close to 12 hours apart as I can. I've set my cell phone alarm for 9 am and 9 pm everyday to help with that. He said it might take a few hours for the first pill to kick in and not to take an oxycodone until I see how the morphine is working.

Well that's where I messed up ! I did take my patch off but I am so use to taking my morning pain pill that I FORGOT and took the morphine and the oxycodone. Stupid me !

I asked my daughter to keep checking on me today to make sure I'm ok. I'm sure I'll be fine but will not do that again ! A stupid mistake like that could really cause some bad problems I'm guessing.

I'll give it a few days and report back on how this is working for me. I'm hoping it will give me more relief than the BuTrans patch was.

I had a meltdown last Wednesday night. I rested more than normal that day knowing that we were going to dinner that night. I was doing well until we came out of the restaurant and by the time I got to the truck I knew I was going down fast. BUT......we wanted to stop at the new Wal-Mart Market as I had not been. So........Christina pushed me in a wheelchair/cart and we were in there less than 30 minutes. By the time we got to the truck I was in tears....tears because the pain had climbed to an aggressive 8 and tears of absolute frustration !

Why can't I go to a sit down dinner out and a short trip to the market ? I don't think that's asking for much is it ? Then I felt ashamed of myself as I know there are many out there much worse than I am :(

Thanks to all who are following my SFN journey. I really appreciate the support and love I get from everyone here on NT.

Debi

en bloc 02-09-2016 12:50 PM

Oh Debi,

I know this is hard, but you can do it and I certainly hope you have enough pain relief with the morphine pill.

You may want to journal your pain levels over the next few weeks, just so you can accurately tell the doctor what you've been experiencing. Also make notes on your activity...as it may relate to your pain levels.

Just a thought.

Hoping to get a good report form you soon.

EnglishDave 02-09-2016 07:40 PM

Hi Debi,

Swapping pain meds is a worrying event. You have the concerns that the reliability of your old med will be missed and there are always the possibilities of new side effects. Then you have to remember dose times and wait for a therapeutic dose to be reached.

However, I am sure you will get into the swing of things rapidly, and will soon be experiencing greater pain relief. Just take things extra easy for a while and clock-watch as meds time comes around. Please be careful regarding taking extra meds, perhaps put them in another place. It is something I have done on many occasions, normally double-dosing due to extreme tiredness and forgetting I had already taken everything.

Here's to low pain,

Dave.

bluesfan 02-10-2016 01:24 PM

Hi Debi

Hope the changes with your meds are smoothing out now. It's good you had someone on hand to keep an eye out when you doubled up. As well as writing down pain levels it may help for a few weeks, until you get into the pattern of your new doses, to write down what meds you took and when. That way if you're uncertain if you've already taken a dose or can't remember what time you took it you can look back.

All the best for ongoing improvement in pain. :hug:

St George 2013 02-13-2016 06:51 PM

Thanks so much for your support :)
 
Today is the first day I've felt like getting out of the bed.

I don't know if it was taking off my last 10 BuTrans patch on Tuesday morning or starting the ER Morphine at the same time but.....I had a terrible week.

I had the weirdest feelings in my head until I woke up this morning. If that feeling had kept on I don't think I could have handled it. I was grouchy, exhausted, my feet were freezing (rare for me) had to stay in bed and was just absolutely miserable. I could not stay up for more than a few minutes at a time.

I had to have my cancer follow up CT scan on Thursday morning. Ever since I've lost Bubba I have a really hard time going into any medical facility. Thursday was not any different. I cried as I had them remove him as my emergency contact and just seeing his name and cell # on this screen just killed me.

The rest of Thursday just got worse in how I felt.

I stayed in the bed all day yesterday.

Then ! Lo and behold I woke up this morning feeling pretty bad but not really noticing that 'weird' feeling in my head. As the morning wore on and my meds kicked in I started feeling better. I got up, showered and actually Put make-up on ! WOW that is major for me.

I need a stove and I am so sick of asking my kids to take me places that I set off on my own to Home Depot. I was on my feet for 2 hours and when I got to the car I was still feeling ok.

Drove home and went straight to bed.....so scared that I had messed up badly by staying on my feet that long.

It's not 6:45 and I still feel ok. I can't hardly believe it and my 'head' actually feels clear and I can think straight.

It's just my first decent day since I started the ER Morphine but I pray I'll wake up tomorrow and feel like I do today.

I would feel so blessed if this new med works for me. Come May I'll have been down and out for 3 long years. I want a piece of my life back. I want to get out of this bed. I want to CLEAN my house !

Thank all of you that read this. I'll update in a few days.

Cross your fingers for me and say a little prayer please :)

Debi

EnglishDave 02-14-2016 06:12 PM

Promising news that you had a better day, Debi. Let's all hope this is the start of a marked improvement and the beginning of a return to a more comfortable life.

Thoughts and prayers, as always, coming from across The Pond.

Dave.

Susanne C. 02-15-2016 11:38 PM

You know I have have good results on a stable dosage of MS Contin for three years. I really, really hope this is the same for you! The trip to Home Depot sounds awesome.
Cleaning the house is overrated! Save your energy for the fun stuff. Having someone else clean the house is the best thing I ever did. With my balance it isn't much of an option anyway, but nothing will wipe you out like mopping a huge ceramic tile floor. So not worth it!
I do still cook and bake, just to keep my self-respect.
So hoping this is the answer for you.

bestbob 02-16-2016 12:00 PM

Nothing but the best
 
Hello Debi - I am new to this message board, and to PN so I have nothing to offer other then my best wish's for you and prayers. I can see that this board is offering substantial support for us all, and specifically for you, and very glad to see it.

Vent away, I for one believe that also helps.

God Bless,

Bob

Hopeless 02-16-2016 04:35 PM

Quote:

Cleaning the house is overrated! Save your energy for the fun stuff.
Dear Susanne C.

Loved your line above. That is priceless. You made me grin for sure and I needed to do that right now.

St George 2013 02-16-2016 04:39 PM

Still doing ok BUT......
 
Hey my friends.....thanks for the recent posts....I really appreciate them :D

Y'all make me so happy !

What I've figured out is that if I take 1/2 to a whole oxycodone about an hour after taking my morning ER Morphine I feel like my old self.

My dr told me to ONLY TAKE the oxycodone at least 6 hours after the morphine. But I was feeling so poorly Saturday morning that I took 1/2 an oxycodone and within an hour I was feeling good and that's the day I went to Home Depot.

I know they have office policies about how much of what you can take and when they can be taken.

If this keeps working for me I'd like to tell my pain dr about it but I am a little worried about telling him too. I'd like to know WHY this is working for me. Does the oxycodone help to make the morphine work better ? I take these about 9 or 10 am and then about 4 pm I take another oxycodone and I do pretty well during the evening.


I have actually been awake all day long for the last few days which is extremely rare for me. I have spent time in bed resting but not sleeping throughout the day.

My head is 'clear' during this time and my thought process is much better.

Any idea why taking my meds like this might be helping ?

Its only been a few days but I'm hopeful this will keep on and if so I can add things throughout the day, like sweeping and such things as that.

Due to be in the bed or on the couch so much the last 3 years I know my muscles are weak and I've got to add a little activity at a time to get my strength back.

Thank all of you for your well wishes. That really means a lot to me.

Debi

EnglishDave 02-16-2016 06:31 PM

Hi Debi,

I think you are getting great benefit from taking your meds like this because you are virtually double-dosing. But, hey, to get relief I have to take my Tramadol, Ketamine and Morphine together. We sometimes do what we must - but we DO NOT tell our PM Drs.

I am surprised you are functioning clear-headed, both meds can cause confusion, drowsiness and memory loss and taking together can increase this effect. So enjoy the new lease on life this combination has given you. Just be careful about dose sizes.

Dave.

St George 2013 02-16-2016 08:37 PM

Hey Dave
 
Quote:

Originally Posted by EnglishDave (Post 1199642)
Hi Debi,

I think you are getting great benefit from taking your meds like this because you are virtually double-dosing. But, hey, to get relief I have to take my Tramadol, Ketamine and Morphine together. We sometimes do what we must - but we DO NOT tell our PM Drs.

I am surprised you are functioning clear-headed, both meds can cause confusion, drowsiness and memory loss and taking together can increase this effect. So enjoy the new lease on life this combination has given you. Just be careful about dose sizes.

Dave.

My adult kids told me the same thing tonight. Double Dosing.

That sounds TERRIBLE ! I guess not having much experience with pain meds I just don't really understand.

The ER morphine is 15 mg and my oxycodone is 10-325 if that means anything.

I get no 'high' feeling from this....just feel better and the pain is low. Almost feel like my happy go lucky self of long ago.

I agree Dave.....if that is what it takes to get me going again and I don't have any side effects from it then I guess that's the way to go and not tell my dr.

I'm just such a truthful person I hate keeping it from him but this combo has helped me more than anything I've tried in 3 years since this started.

Thank you Dave for your post.

Debi

Cliffman 02-17-2016 07:22 AM

Quote:

Originally Posted by St George 2013 (Post 1199666)
My adult kids told me the same thing tonight. Double Dosing.

That sounds TERRIBLE ! I guess not having much experience with pain meds I just don't really understand.

The ER morphine is 15 mg and my oxycodone is 10-325 if that means anything.

I get no 'high' feeling from this....just feel better and the pain is low. Almost feel like my happy go lucky self of long ago.

I agree Dave.....if that is what it takes to get me going again and I don't have any side effects from it then I guess that's the way to go and not tell my dr.

I'm just such a truthful person I hate keeping it from him but this combo has helped me more than anything I've tried in 3 years since this started.

Thank you Dave for your post.

Debi

Hi Debi,

Even though it may be a double dose it does not sound as if it's harming you since you're not high or groggy. Plus, the quality of life that you are gaining from this is a huge benefit. I am so happy for you Deb! Your secret is safe with me :)

Cliffman :hug:

St George 2013 02-17-2016 12:36 PM

I did too much yesterday BUT......
 
I was able to go to our small grocery store yesterday and I actually cooked a big dinner for my family.

I was in pain last night when I went to sleep but did sleep all night.

I woke up this morning in severe pain ! I was at a solid 9 in my feet and hands. I drug myself out of bed and got something to drink and took my morning meds that included the morphine. Stayed in bed.

An hour later I still felt awful in my head and my pain level had not gone down much.

I took a whole oxycodone 10-325 and within 30 minutes I was able to get out of bed. My pain has gone down to a 5/6 but my head is clear so as usual the pain is easier to handle when my head is 'clear'.

Do any of y'all experience the 'head' thing that I do when my pain levels are high ? I can't think straight and I'm miserable in my 'head' as well as in pain. It's a moan and groan feeling.

After the oxycodone all those feelings in my 'head' stop.

I have got to STOP over doing when I feel good. I do this every time !

Y'all are so sweet....thanks for the messages ! They really brighten my day !

Debi

en bloc 02-17-2016 02:05 PM

It is clear to me, Debi, That your ER morphine dose is too small. Any time you have to use breakthrough meds as a part of your regular regimen (especially at the same time other meds are in force), it's because the base medication isn't enough to properly control your pain.

You need to tell your doctor, but you really don't have to tell him you've been doing it all the time. Just tell him you've done it enough times to confirm the positive result and then waited to discuss it with him. Hopefully, he will see the clear signs that you need an increase in the morphine.

Break through meds are actually only to be needed for times when you over exert in some way or other times when your morphine wears off before the next scheduled dose.

The 'head' thing is also clear signs of too much pain. On the patch, you were receiving around the clock relief (or at least reduction of pain)...enough to keep the head stuff from happening. Severe pain can cause many other symptoms besides pain. I get nauseous when in severe pain.

I think once your pain meds are properly dosed, you will be able to do what you want without fear of paying for it later. Some discomfort later after over-exertion is one thing, but what you are describing is just too much pain and not enough meds to cover it.

St George 2013 02-17-2016 02:42 PM

en bloc
 
Thanks for the post.....lots of info that I can relate to.

When I was on the BuTrans and I did too much I had the same result as I did today. Just down and out but usually for days at a time. I also had to take my oxycodone 3 times a day and told my pain dr that it was actually 'part' of my pain regimen and not just for breakthrough pain. He agreed.

I also told him that I could not wait 8 hours between the oxycodone while on the BuTrans and that I was taking the 3 about every 4 to 5 hours apart a day. He said "you're not suppose to do that" but didn't tell me not to. He actually didn't say anything other than that.

So my 'head' feelings are a result of too much pain ? That makes sense. My neuro actually wrote "intractable" pain in my records when I was filing for SSDI.

I don't know that I've accepted the amount of pain I'm in. I always see the glass half full vs half empty. I never think I'm worse than anyone else. I've always had self confidence issues.....I think all this plays a part in my pain and how I feel about it.

I have seen another poster on here that is on the 30 mg of ER Morphine and it works for her very well and she does only use oxycodone for breakthrough pain.

Good suggestion on saying I've tried taking an oxy sooner on occasion and it seems to help more without any side effects.

It's just weird to me that after I take the oxycodone it just helps so much. Is it enhancing the morphine somehow? And if that works then why could I not use them together. Are both meds together just too much on the body ?

This combination is helping much more than the BuTrans/oxycodone did.

Since I've lost Bubba I feel so lost and alone in trying to figure all this out. He was my sounding board and the kids try but just don't understand chronic pain.

I know this message is all over the place. Please excuse me for that.

Thanks en bloc....I very much appreciate any help/suggestions.


Debi

en bloc 02-17-2016 03:35 PM

It's not so much that the one enhances the other...it's just MORE pain meds, which you obviously need for properly relief. You just have to tell him that you are NOT getting the amount of relief you need unless you take them together (on the occasions that you've tried this...lol). When do you see him next?

en bloc 02-17-2016 03:44 PM

BTW, I looked it up and it appears that 20 mcg BuTrans patch is equivalent to 40 mg morphine. Therefore, you may be under dosed compared to what you were taking.

Not unusual for pain mgmt to start out lower and work their way up...but he needs to know that this isn't working for you at this dose. So be sure to tell him.

Susanne C. 02-17-2016 09:17 PM

Just as en bloc said, your morphine will have to go up. While mine was in the stages of being titrated up, I had to do the same thing, take an oxycodone to get out of bed. Now that I am at 30 mg x 3 daily, every 8 hours, I only take the oxycodone on a very busy day or when the weather is really bad. I average one per day. I am fine in the morning, but that is with taking the MS Contin last thing before bed and again at 7 am. They really don't work for 12 hours for many people.
I think this sounds extremely hopeful! It is tricky to work with the doctor on this, sometimes you have to be very diplomatic. My doctor could tell by how many oxycodone I needed that the dose was too low, also my dentist said that grinding my teeth at night was a sign of inadequate pain relief and that helped corroborate what I was saying. They can't go up all at once but he should be aware that the dose will need to be adjusted.
I don't understand the warning not to take them together. I was never told that. Since the morphine is extended release you aren't getting it all at once so the timing shouldn't matter, should it?

St George 2013 02-29-2016 12:30 PM

Happy Leap Day everyone !
 
I don't think I will EVER understand how this SFN/chronic pain works.

Friday morning was bad as usual......then all of a sudden I felt better, almost normal. Had a GREAT Sat and Sun but when I woke up this morning I hurt all over and my feet are so sore. Now I'm waiting for the rest of the symptoms to return to my feet and hands.

I think it's been months since I've had more than one good day in a row.

I had even called last week and had my pain dr appointment moved up 5 days to this Thursday because of the pain.

My head is still 'clear' today so I know I'll be able to handle the pain better today.

For the last week I've been taking 1/4 of a oxycodone when I take my morning ER morphine. Then a few hours later I'll take another 1/4 or 1/2 depending on how I feel. I do that for the rest of the day until late evening.

I am hoping he will raise my 15 mg ER morphine to 30 mg ER on Thursday.

Good news ! I felt so good Saturday I called my daughter Christina, and asked if she wanted to head to the next town up and look at a pool ! And I BOUGHT one ! Need to call the decking people today and I have an installation date of April 8th unless the weather interferes.

So to my dear Bubba.....you loved to play the lottery......I'm using what you would have spent on lottery and buying the family a pool ! That will be my lottery and I'm naming the pool Bubba.....a pool needs a name too right ?:D

Debi

en bloc 02-29-2016 04:30 PM

I hope so TOO!! Like I said, according to online comparisons, your 20 mcg BuTrans patch was equivalent to 40 mg ER morphine. I thought you were getting 30 mg ER already. If you are only getting 15 mg ER, then you are WAY below what you were getting before. NO wonder you are in so much discomfort. So glad you got your appointment moved up and will see him on Thursday. Ask him to at least put you on an equivalent dose.

Please keep us posted, Debi.

Great decision to get the pool.

Cliffman 02-29-2016 07:35 PM

Quote:

Originally Posted by St George 2013 (Post 1201873)
I don't think I will EVER understand how this SFN/chronic pain works.

Friday morning was bad as usual......then all of a sudden I felt better, almost normal. Had a GREAT Sat and Sun but when I woke up this morning I hurt all over and my feet are so sore. Now I'm waiting for the rest of the symptoms to return to my feet and hands.

I think it's been months since I've had more than one good day in a row.

I had even called last week and had my pain dr appointment moved up 5 days to this Thursday because of the pain.

My head is still 'clear' today so I know I'll be able to handle the pain better today.

For the last week I've been taking 1/4 of a oxycodone when I take my morning ER morphine. Then a few hours later I'll take another 1/4 or 1/2 depending on how I feel. I do that for the rest of the day until late evening.

I am hoping he will raise my 15 mg ER morphine to 30 mg ER on Thursday.

Good news ! I felt so good Saturday I called my daughter Christina, and asked if she wanted to head to the next town up and look at a pool ! And I BOUGHT one ! Need to call the decking people today and I have an installation date of April 8th unless the weather interferes.

So to my dear Bubba.....you loved to play the lottery......I'm using what you would have spent on lottery and buying the family a pool ! That will be my lottery and I'm naming the pool Bubba.....a pool needs a name too right ?:D

Debi

Hi Debi,

Your news about the pool is fantastic! I am so happy for you. Also, I love that your naming the pool "Bubba".

In regards to the small fiber neuropathy pain I think what happens is that the medicine masks over the pain but when you put pressure for a prolonged period on the damaged nerves that pain will break through eventually causing you to have a bad day or two and then the whole cycle repeats itself. I may be wrong but that's my theory based on my own experience with with the nerve pain.

Wishing you better days ahead.

Cliffman :)

bluesfan 03-01-2016 02:05 PM

Hi Debi

Well done on the pool trip - glad to hear you had a couple of days well enough to get the purchase made. Something to look forward to in summer - immersing yourself in Bubba - sounds wonderful :).

St George 2013 03-03-2016 01:19 PM

Y'all are so sweet
 
Thank you for the posts....made me smile on a bad pain day and that's saying something :eek:

My good days left me for good on Tuesday night. Barely slept because of the pain in my feet. Was in bed all day yesterday until 4 pm when I MADE myself get up and shower because....

Ok...hang with me here. My 2nd ex daughter-in-law, who is now back with my son after his 3rd divorce :eek:
Had a birthday dinner last night and I HAD to go. I've cancelled on so many outings with them that I just couldn't do that to them again.

I did ok, not really, and came home and went to bed. Woke up this morning still in pain The oxycodone isn't really helping either.

I guess part of it is the weather. Storms rolling through here and there over the last week.

I HATE not being able to drive....my pain dr's office called around noon saying I could come on in anytime.....my appointment isn't until 4 pm. I called my son who is taking me today and he can't get off until about 3 pm. I would have loved to get in the truck and drive my dang self !

Hoping the pain dr will increase my ER morphine from 15 mg to 30 mg. Thanks for the info on that conversion en bloc.....I never thought to look that up :rolleyes:

Guess that needs to be my 4th goal....not that I've met the first 3 yet...lol

I feel so bad I can't believe I've written this much ! WOW you guys sure inspire me ;)

I've got to feel better before Saturday as that is the day that Ed, the deck man, comes to talk about the deck to go around my pool !

If any of you have suggestions about the pool deck please pass them along to me. I know I need a built in bench for all the pool supplies.

When Ed called he said "You wanting a regular pool deck?"...and I said "Heck no ! I want an awesome pool deck!". He's totally on board and why wouldn't he be ? That's money in his pocket.

Thanks my friends......you surely are an awesome group !

Debi

PurpleFoot721 03-03-2016 02:09 PM

Debi,

It sounds so wonderful that you decided to get a pool. I have heard that it can do wonders both physically and mentally. The only things that comes to my mind that I would suggest is make sure you have some sort of shade. It can be as simple as an umbrella, but I have found that sitting out in the heat of the summer sun can be a little hard to take sometimes. It's nice to be able to sit and enjoy the pool deck from the shade on those hot days.

If you are planning on using composite deck materials, do some research on the brand that the deck guy uses. Some of them have been known to break down over just a few years if exposed to too much sun. I used to work in the office of my dad's construction company. It was my responsibility to research that a few years back when a customer was having problems with a deck that deteriorated in just a few short years. Since it was still under warranty, the manufacturer ended up paying to have the deck rebuilt.

Also, you may want to look into a decent pool vacuum. There will still be some cleaning and maintenance that needs to be done daily but the vacuum makes it a lot easier.

bluesfan 03-03-2016 02:15 PM

Hi Debi

Sorry to hear you're having such a rough time at present - I hope your visit to the doc brought you some relief.

Re the pool deck - suggest you let your fingers do the walking - here's a link to one website with lots of ideas - there's also lots of other sites if you google 'pool deck' :

https://www.pinterest.com/explore/swimming-pool-decks/

Here's another link related just to 'above ground pool decks' - I'm guessing that's what you're having:

https://www.google.co.nz/search?q=ab...HakAA7UQsAQIGQ

If you see something you like you can either print out a photo or just bookmark the site and show your contractor on Sat.

Take care and hope you get some restful sleep. :hug:

echoes long ago 03-04-2016 11:53 AM

if its an above ground pool i recommend you not take the filter cartridge system they usually include in the package and instead use a sand filter. also get a very small electric submersible pump that you can drop to the bottom of the pool that will circulate the water around the pool while the pump for the filter is running. just pull it out if anyone is going swimming. its very hard to keep above ground pools clear because the filter is only getting water from near the surface of the pool. the submersible pump takes care of that. also a detachable ladder is a must if there are children who are going to be at your house.

St George 2013 03-04-2016 03:14 PM

Very upset after PM visit yesterday
 
I'm still upset and slept very little last night.....cried a lot. Finally took a whole pain pill about 2 hours ago and it has calmed me down and lowered the pain in my feet.

I was just totally devastated, felt like my life was over and cried hysterically in the dr's office. So glad Luke took me as he doesn't mind adding his 2 cents worth and was able to talk to the dr as I was crying.

Met his nurse pract for the first time yesterday and as usual, she had not read anything in my file before coming in with the nurse. Had to get her on the right page and then she offered stuff I've already had done. She went and got Dr Chang and he said he could not increase the 15 mg ER Morphine. Said the 30 mg ER would be to strong for me ?

He said.....he could take me off the morphine and just put me on oxycodone 3 times a day, or put me back on the BuTrans patch. I just lost it......explained that I have NO LIFE and have never reached any of the 3 goals I came in with Sept/Oct of 2014.

Told him I knew there were many meds out there and was there not something else that could be tried ? He said methadone. Said it works on a different pain receiptor (sp?) than the morphine or BuTrans.

I've been on the 15 mg ER morphine 4 weeks now....I asked would it get any better and he said NO......

I didn't ask whether his decision to not increase the morphine was due to their office policy which I've run up against before.

I would like to increase the morphine to see if that will help before switching to anything else.

It was so much to take in I told him I would have to think about the methadone. I'm not opposed to trying it but would like to make sure an increase in what I'm taking wouldn't work first.

Does any of this make sense ?

I really like this dr and have always felt he was on my side in trying to get some quality of life back to me.

Here I am trying to be a good patient and only taking 1/4 to a 1/2 oxycodone when I can take 2 whole pills a day.

I told him nothing I have tried is giving me the relief I need to lead a decent life. He said on the days I feel good I have to stop doing so much ! Those days are few and far between and the rest of the time I'm in bed.....what the heck !

Comments and suggestions would be very welcome at this point.

I've always felt at some point I would find a combo that works for me and now I feel like that may not ever happen.

He told Luke there wasn't much else to try and that he wished the SCS had worked for me. Well I wish it had worked too !

Has the dr given up on me ? Unhappy because he can't fix me somewhat ?

Debi


All times are GMT -5. The time now is 05:17 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.