what I just posted

[Nikilee]

Hello all...I am so sorry I don't understand better how to put up a new post and have the most people view in order to give advice.  I posted about 40 minutes ago and I am not sure if I posted somewhere that it won't be seen.  It is about trying to wean down on a fentanyl patch.  I had posted 2 days ago, asking for advice...and now I am back for more.
Can those of you who have experience with fentanyl AND with this forum please hunt for the post I just put up?

Thank you so much...I just couldn't type it all over again.

~Nikilee

[BOK2Bjan]

Hi,

I had to comment on something Tuck said about chronic pain being part of your life.  It is unfortunately true.  It isn't to say that sometimes by some means, it can be possible to have it improve or even go away - that does happen - but it isn't very often the case.  Do you know the frog in the pan story?  If I had gone from "normal" to the amount of pain I have right now, I probably would have gone into shock and "perished"!  No kidding.  I often wish "some people" could experience my pain if only for a second - just to understand what it's like.  But the fact is, as each new disease process took its toll and more pain was added to my life, it at first seemed insurmountable.  Then time passed, and I got more and more used to this new additional pain, and before I knew it - it wasn't as noticeable.  Then new pain would be added, and once again I didn't think I could deal with it - time passed - and I would accommodate.  We're capable of handling amazing things if it's given to us slowly enough over time.  I'm at a place right now where I'm once again wondering if "this is it" - the amount I won't be able to handle.  I'm trying to "remember" that I've been able to handle it before and I'll be able to again, with God's help and grace.  It can be overwhelming at times though, which is why we need support.  I don't have any right now in my "real" life, which is why I'm here, but you have support here too.  And Tuck is right - fear can make it so much worse.  I can think of many times when a symptom has scared me and I've become hypersensitive to it in a panicky way - THAT can be like putting a megaphone on your nerve endings!  As long as we don't forget that the reason we were made to feel pain in the first place is - it helps us know when something is wrong so we can get help.  You've done that for now, so you can trust your doctor at this point I believe, and use your medication as seems appropriate at the moment and have faith that you will readjust to the new norm and feel better.  You WILL feel better.  And don't forget, your accident wasn't that long ago.  You have to settle down from that and completely heal.  It always takes more time than we think.  Blessings to you - you - you're not alone.  Jan

[Tuckamore]

Hi Nikilee,

Sorry you can't sleep, neither can I. I too have had chronic pain for years. As it has been explained to me and from my experience chronic pain will in all probability never go away completely. The goal of treatment is to decrease your pain level to a manageable level. I've been told it is unrealistic to ever expect to be pain free.

I am glad that you will see your physician on Thursday. If you were instructed to add the additional 12 patch if needed and you are experiencing a lot of pain I would add the additional patch. Remember that it will take 6 to 8 hours before the medication in the second patch will begin to work.

Controlling chronic pain is a trial and error process between which opiate works best for you and at what dosage. Hang in there, you and your physician will get it right. Going onto the major long acting opiates can be frightening. They will produce side effects such as you described until your system adjusts to them. Although 75 may have been to high a dose to start with you may discover that you will eventually require that dosage as your system adjusts.

I do no have Fibro but I can imagine it would be a difficult diagnosis to get your mind around. If all other causes have been ruled out it is very likely that your physician is correct. Fear of pain can actually make the pain worse. So try to relax and understand that the pain will not cause death. You will be able to control it better with time. And someday you will accept it as part of your life, something you have to learn to deal with and work around. I'm sorry if that sounds harsh. I sure don't mean it to be.  

We are always here for you. Feel free to send me a PM if you would like. Take care of yourself and try to do something that you enjoy or that brings peace to your life. It will help. I'll look forward to your updates.
Tuck

[Nikilee]

Hello Tuck,

Thank you so much for you kind reply.  I seem to be jumping back and forth between forums...and wish I had started out on this one.  I didn't see Pain Management in the forum list at first because I was mistakably looking at the Doctor list.  Anyway, my last post was in the addiction forum, to Nick.

Basically, what happened yesterday, in the afternoon, is that I finally got my PA from the Pain Management clinic to call me (by my husband  driving me to the clinic for me to leave a note for anyone who could help me...because I was still feeling so "strange". ) Turned out that the PA I usually see was coming in that afternoon...and the receptionist gave him my note, and he very kindly called.  There were no doctors there at the time, but he made arrangements to have prescriptions there for me this morning...for 2 -50 mcg patches and 2-12.5 patches, so that I could go down either to 50 mcg. today OR to 62.5.  This way, by the time I have my appointment with him on Thursday, we will know how it works for me going down.  I chose to go to 50, thinking that if my pain comes back, I could add the 12.5 patch if it became unbearable or was not helped by OTC Nsaids.  Very odd thing...and kind of "sad" ...is that tonight, towards midnight, my "old" original pain (before the accident) of neuropathy in my feet seems to have come back.
It has only come back once before during this recuperation period, and that is when I forgot to take my Cymbalta.  But today I remembered.  The only differences in today are that I went down on the fentanyl patch, and I have been off of the .5mg of dilaudid I was taking.  I have been off of it for 3 days (or maybe 4).  And now I do not know what to do about if this neuropathy gets worse.  I was on Darvocet for probably 10 years, to help take care of this problem, mostly at night when it would get worse.  I have given that up.  I do have a few hydrocodone, that I was taking before my accident, in place of the darvocet.  Thought the Cymbalta helps with this problem, it doesn't eradicate it.  And though I can stand the neuropathy during the day, it makes it very hard to fall asleep at night.  I was (probably magically thinking) that maybe when I came back from my accident, the other problems would be gone.  I guess they have all been covered up by the dilaudid and fentanyl. I also have pretty intense pain in my shoulders (this, too, is pre accident).  And it started coming back before the neuropathy.  It is interesting to watch this process...but I get a little afraid about what if the accident pain comes back?  I don't want to take the dilaudid again, even in a teeny dose, but I may need something else.  I guess it will be a choice between taking the extra 12.5 patch...OR finding another oral med that works.  Can't do neurontin OR Lyrica.

Would love getting any advice to all of you who deal with chronic pain.  My came on almost 15 years ago, and I don't know why.  I have always viewed that I just had neuropathy...until a few years ago I was also diagnosed as having fibromyalgia.  I have been "skeptical" about that diagnosis, but those tender spots tell no lies.

OK...sorry this is long.  I am awake and thought getting this out would help me sleep.
Again, you are all so accepting and kind...and I truly appreciate it.

~Nikilee

[Tuckamore]

Nikilee,

It is now morning and I hope you are feeling better. I must apologize for not being here last night. Normally I check in and often I am here in the wee hours of the morning. But I was operating on just a several hours of sleep in 48 hours and I did crash...so I'm sorry.

My advice to you would have been similar to Jan's. The longer you wear the patch the less medication it omits. Some ppl have to change the patch every 48 hours. I think you were at or close to the 48 hour mark. I am glad you went to the clinic. And I agree that if they or the  PA thought you were in danger they would have told you to remove it. Actually it take about 6-8 hours to build in your system and another 6-8 hours to leave your system.

Don't let ppl on this forum scare you. You must remember that there are no physicians or experts here. Listen to your physician or your PA or even a pharmacist. They are the experts. Every one's system is different as is their tolerance and experiences. Your physician would not have ordered a 75 patch had he thought it was life threatening.

Please let us know how you are doing. I will be here most all day and will watch for your next post. Peace, Tuck

[Nikilee]

Hello Jan.  Thank you so much for your comments.  I think my fear comes from ignorance more than anything else.  I have read some comments in this forum that if you are experiencing drowsiness and feeling strange while wearing your patch, then you are probably wearing too high of a dose.  I don't want my body to get used to a higher dose, therefore making it harder to go down.  AND this drowsy, strange feeling is REALLY bothersome.  I also have this kind of  "roaring" inside my ears (or my brain???)...I can't tell where it is coming from, but I only have to close my eyes tighter or bite down harder and I "hear, feel" it.  Does anyone else experience this or know what I am talking about?  I am taking Cymbalta (60 mg) and today I had to take Imitrex for a migraine...I don't know if it is some kind of reaction of these drugs together??
Anyway, yes I am fearful. And no, I haven't had a bad experience with pain meds in the past.  This is just all new to me, taking this big of dose of narcotics (I was also on dilaudid...and all of this is because of an accident where I broke my pelvis and 6 ribs).
Probably 9 weeks of being homebound, with each day being a little bit different in terms of trying to get comfortable and not knowing what to expect the next day makes me more afraid of the medicine adding anything else to make me "feel bad".
I am a big believer in prayer, so I do appreciate that you will pray for me.  Thank you~

~Nikilee

[BOK2Bjan]

I just read your post that you wrote an hour ago about the script for 2 50s and 2 12.5s you'll get in the morning.  But you still have fear about going through the night with the 75 on.  I appreciate your reaching out for advice to calm your fears.  You obviously have a lot of anxiety about this.  I wonder if you could practice some relaxation techniques.  I very much doubt if you will have a problem tonight, as you were just seen in the office, even if not by a doctor, by those used to seeing patients in stress.  You apparently didn't appear to be in physical distress to them.  Fear is a very uncomfortable thing.  I empathize with you.  At this point, you don't need to function (I imagine) at a high level for the rest of the night, as it is after 11pm (in middle USA).  My advice is to put on some music, or other relaxing stimulus, lie down, and do your best to imagine yourself in a wonderful, relaxing place.  As long as you haven't experienced any serious side effects up until this time, I doubt you will later on.  The amount in your system will likely stay stable or go down - not up.  Have you or someone you loved had a bad experience with pain meds in the past?  I was just wondering if you were aware of where your anxiety came from?  Think of me saying a prayer for you to be able to feel peace and get some rest tonight.  I will do that very thing.  I wish you well tonight and tomorrow as you begin lowering your dose.

Blessings, Jan