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?

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 ?

Debi

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.

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

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 .

Thank you for the posts....made me smile on a bad pain day and that's saying something

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
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

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

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.

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.

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.

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