Brief Update: 7/3, now 7/5

Listen, I am not on trial here. Having a bad enough day in severe pain as it is, can't hardly bear any weight on my right side.

What I should have said was simply: the doctor upped me to 125 on the fentanyl, instead of trying to remember all the details and nonsense at the drug store, when none of that part was important in the first place.

In the future, my updates will be much briefer, and less in detail.

Just thankful the doctor saw me on demand (not a regular appointment), cared enough to up the meds while the neuro center appointment was being made. That's what matters to me.

I don't think Tina or any of us are trying to badger you here...It's just when anyone posts on HW....it is a learning experience for all of us when things go wrong and getting to the bottom of it is important to having something not repeat again.

And to have all of this being in regards to Fentanyl, which is the strongest pain med out there, any mistakes can be deadly....

So I think that is why we were asking questions to see if your Dr. had explained things to you clearly or not....It's just scary to see this kind of situation with this type of med and have everyone so confused from your Dr. to the Pharmacy about what you should be taking as well as having you take medication that is over a year plus old which can be dangerous.

As I wrote earlier....since you have now gone up by 50mcgh within the last few months and are not noticing any real difference, it may be showing that opiates may not be the meds to really help you so I really hope they can find a good treatment plan combination with nerve pain meds, muscle relaxers, physical therapy, and counseling.

We all help one another here by sharing our stories and yes, questioning things at time as well as offering support so that someone doesn't keep getting the treatment and problems that you seem to run into with all your Drs. and health situations..

Post Edited (Snowbunny21) : 7/9/2013 1:50:12 PM (GMT-6)

boxerlover,

thank you, I feel you truly understand my overall situation.

I agree, Fentanyl has been a blessing to me too.

I wish you the best in your own complicated journey.

david

thank you jane.

I admire your own struggles, couldn't imagine going through one knee op, let alone 15. I think your issues are equally bad, as I am one that doesn't like to compare war stories. we each have our own battles, our own demons to fight. every person's case here is unique.

until my oncologist put me on fentanyl, I had never heard of it before. prior to it, I was on the Lortabs only for about a year prior, and really struggling with the increasing pain. He started me at the low 12.5 mgm, to help get me acclimated to being on it, then has moved up the doses as needed.

I couldn't imagine not being on it any more, as it still handling the bulk of my pain, and this latest increase to 125 from 100 has helped some, but at least its buying me some time till I get through with the neuro-center appointment. It's one week from today, and I have high hopes and high expectations, really hoping this time I will get the answers I am seeking.

Sounds like you have a patient "other half". I do too, and that's another amazing blessing in my twisted journey, is having a nurse for a wife, but one that is very understanding and patient in return. she knows my physical limits, and never ever makes me feel bad for what I can't do, and is always appreciate for what I can do.

She told me ,all the pay back in the world was done late last year when her back gave out, and how I took care of her, and waited on her hand and foot for those months. Told her I would have done that regardless, always promised if anything happened to her, I would take care of her. Not to sound lame, but to me, that is what true love is all about. The "in sickness as in health" part, we just happen to believe it literally.

Hope you get a break too, may some good things happen on your end to make your life more bearable.

david

I have to agree that sometimes when a medical situation becomes more involved or complicated, the chance of some crazy things happening increases! My fiance had/has pancreatitis, cirrhosis, HepC, liver cancer, and finally a liver transplant last November. It's been a train wreck - from appointment issues (cancelled, re-scheduled, mixed up, etc.) - to doctor, surgeon, and coordinator issues (can't reach, playing phone tag, msgs. to wrong numbers, 'lost msgs.', disagreements over 'who does what and when', etc) - to medication/prescription issues ('weird'/rare side effects, insurance problems, wrong scrips given, changes in scrips, 'balancing different meds', etc.) - and there's more, but you get the picture! I've often thought that if someone didn't actually know me, and they heard some of the fantastical things that I've experienced in my health journey, they might think, "No way!". But in my fiance's case, I don't think ANYONE would believe it was possible to have SO much go wrong, get screwed-up, get lost, etc.! I think we could write a full-length tome about this journey.

Anyway, David I hope you receive some much-deserved answers during your upcoming appointment! And I wanted to tell you how lucky you are that you have had success with the fentanyl patches - I'm not talking about the pain relief aspect, either. My fiance was prescribed them at one time and it got to the point where I almost reached for the nail gun to try and keep those suckers on! We tried the Tegaderm, various kinds of medical tape, 'prepping' his skin in various ways, even DUCT tape (yes, I know that's a no-no, but it was either that or the nail gun!) - absolutely nothing helped those things stay on! And when I say they wouldn't stay on, I mean for even like 15-20 minutes! Needless to say, the fentanyl patches are no longer included in his pain-killing arsenal. Strange thing is, he can use the Lidoderm patches with no problem. Oh well, he's just weird I guess. Lol Btw, did you see my previous post about the internal electrical stimulation?

Hope you are doing well tonight. Have a peaceful evening.

I have a theory. If everything in existence is energy- including thoughts- and if like energy attracts like energy, then it would make sense that bad/negative things would happen in a chain reaction or as a "black cloud"

Also, Re the dilaudid. The bio availability of it in pill form sucks. Most of the medication gets destroyed in the process of digestion and never makes it into the blood stream. If I remember right its only about 30-35% which is horrible, especially when compared to other medications like oxycodone which are between 80-90% absorbed.

That's why the IV form works so much better, it goes directly into your bloodstream. I feel like it's pretty useless in pill form honestly, and that if it IS prescribed, the bio availability should be taken into account when figuring doses.

Thank you for the kind words Dave . I began taking pain meds many years ago. I had multiple pain issues and at one time or another was given pain medication by different doctors for different problems. I had been reading up and back then it was no where like it is today, but I went to my primary care and asked if he would be the only doc to handle my pain meds. I was put on Norco 3 a day. I spent a few years on that and my ex husband was transferred so we moved and I got an Internist instead of an HMO doctor who never referred me. I had so many things wrong I was referred to 7 specialists, one being a pain management doctor. I got lucky in that he asked me if I had a preference to what long acting med I could try. I was honest and told him I did not want to try methadone, it scared me but any of the others would fine as I had never been on them. He picked the fentanyl patch and I have been on it ever since.

I am also lucky in that I remain very stable. He first tried me on the 25mcg every 3 days and that did not work at all. He then upped me to the 50mcg and then a few months later to every 2 days. I stayed on this dose over 5 years before I was raised to the 75mcg and I have been on that now over 5 years and still am stable. I do have BT meds which I need.

I hope the patch is still helping and you get some answers here soon!