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THOUGHT I WAS GOING TO DIE

Posted by Michael K on 11/16/03 at 20:46 (137671)

My doctor prescribed the Celebrex and the Vioxx where both did nothing for the pain. I felt kinda guilty asking for the narcotic pain meds. I am now 53 and was one never to take any pills not knowing long term effects but after having all the pain my attitude really changed in a hurry. I just got so tired of all that pain. I even thougth I did not have PF I must have something else which is worse the doctors just don't know. But after reading here I now realize what I have is PF. PF is a very painful condition it has to be experienced to really know the hell it is. Most conditions you can rest or lay down and be nearly pain free not with PF no matter what you do stand, sit, lay, crawl, walk the pain is there. My pain was so horrible I even tried this a Fentanyl pain patch the dam thing about killed me. My wife called 911 within a few minutes the paramedics had me in an ambulance and off we went it was probably the worst experience in my life. Michael

Re: THOUGHT I WAS GOING TO DIE

Sher A on 11/16/03 at 21:02 (137673)

Michael, the doctors don't care.

Re: THOUGHT I WAS GOING TO DIE

Sher A on 11/16/03 at 21:13 (137677)

For now the only thing I want to mess with is lortab 10/500 or something like that. At least I can stay functional with it and for just as good a reason as any, it makes me think it's actually doing something. What happened to you with the patch?? I tried the duragesic patch and that was as bad as the oxycontin. Didn't touch the pain but I nodded off like a drunk with it. You know, I also have a farm in addition to a full time job. I HAVE to be able to WALK.

Re: THOUGHT I WAS GOING TO DIE

Michael K on 11/16/03 at 21:38 (137678)

Hello Sher two weeks ago on Wednesday around 3:00 PM I put the Fentanyl patch on at around 9:00 PM that night I felt dizzy and felt like I was falling. The morning arrived, 5:00 AM, woke up feeling very very weak could not move. Had my wife call 911 to ask them about the patch and my condition. In about four minutes they arrived ask me to move my legs I couldn't. They took my blood pressure after that without talking to my wife picked me up put me in an ambulance and off we went. There they gave me a shot to counteract the patch. All I did was vomit never was so sick in my life for three days I layed in bed at home. I am so glad that experience is behind me. I tell all be careful on what you try. I researched the Fentanyl patch before putting it on I read all the warnings they scared the hell out of me but with all that pain I still put in on what a mistake. Michael

Re: THOUGHT I WAS GOING TO DIE

Sher A on 11/17/03 at 05:55 (137695)

And if you work for a living, you probably blew away all your leave in that adventure. Again... the wonder of doctors. Fentanyl. That's the same stuff in a gaseous form they sprayed into an auditorium to qwell an uprising in Russia last year or the year before, that sickened and killed so many. Doctors don't have time to be bothered with you, they're too eager for that next easy 10 minute patient and those $$$ and kickbacks from useless medications that force us over the border and untoward measures to be able to afford them even with insurance. Just like 'health insurance' (what an oxymoron) - they want immortal people, ones who will never get sick, those who get well (and I have yet to see one) with a month's supply of vioxx or celebrex, they want those dollars. TV commercials are beyond ridiculous. Sure, if someone paid me $500 I'd get up and jump for joy in a commercial and lie too - all those old ladies looking so happy in the celebrex commercial. Please. Makes me want to kick the tv in when I see or hear it. See how many insurers will cover custom orthotics for example. Just seeing the word 'doctor' raises my blood pressure (except for the one I finally found, and will probably have to move to wherever he goes). Today we have to be informed about our own bodies and treat ourselves, and how we hurt because obviously doctors don't quite understand this yet, visit places like right here, and order our OWN medications that do the job. One doctor had the gall to tell me that if I were shopping for narcotics I wouldn't find them there. And I'm to trust these people??? I PAID to hear that?

The only doctor I trust actually told me the truth and I know that people will beg to differ. Until it happens to me however, I will believe this doctor. PF will always be your friend and be with you (joy for podiatrists and the makers of vioxx and celebrex). Sometimes it will be fine, sometimes it will be disabling, but it will never go away. I live for those in-between moments. I sure do envy those who cope with it so well when it's 'gone'. I wish I had your strength, but this has taken me down to about the bottom level, believe me. I'm sorry, it's going to take me longer to be able to get over my disgust, distrust, and bitterness.

Re: Don't give up, there is help

BrianG on 11/17/03 at 08:56 (137706)

Hi Sher / Michael,

I'm sorry Sher, but I don't think it's right to blame the Fentynal for what happened to Michael. Right now, it's helping too many people to count, for everything from from chronic pain, to terminal cancer pain. If you give some one too much of anything, they are going to have big problems. How about water, normally something we all need, every day, if we take too much, we drown!

I know that Micheal said he researched the Fentynal before he took it, but it was obviously much too strong for him. The patches only come in a couple different strengths, and what he took was apparently too strong for him. He propbably would have been much better to start another type of pain medication, in pill form. That way he could start at a very low dose, and slowly work his way up to a dose that would help his pain. I hope that he can work with his doctor, or another pain specialiast, to take a pain med (in pill form) that will work for him. There are many: Oxycodone, Oxycontin, MsContin and Oramorph. All come in small doses, that are much easier to take. The following link contains some good information for people who are taking pain meds, or who are thinking about taking pain meds:

http://www.painfoundation.org/

Regards to both of you,
BrianG

Re: Don't give up, there is help

Bud P. on 11/17/03 at 09:25 (137707)

Brian,
You are right on with the advice about the Fentynal. I am on pain management and for break through I take the Actiq ( Fentynal) lozenger. It looks like a lolipop. It is very effective in controlling my pain between regular doses. But like anything if I use it to often I'll get sleepy

Re: Don't give up, there is help

john h on 11/17/03 at 10:00 (137714)

Brian: Good board.

Re: Don't give up, there is help

marie on 11/17/03 at 16:32 (137756)

Wow, that's a great site. Thanks Brian

Re: Don't give up, there is help

Sher A on 11/17/03 at 20:42 (137798)

I understand Brian, really I do. But it is the responsibility of the doctor to do that, to start you out according to your level on a scale of 1 to 10, and work up to the right dose, titrate or something like that. I'm not sure of the exact term. Here's how it works: You tell them it isn't strong enough. They are supposed increase the dose appropriately. You keep doing this (over the phone, why pay for another office visit?) They don't have time and don't want to go to the extra effort. Easy in easy out. Don't forget, I live in a ratrace and doing anything up here requires A LOT of time and a lot of research. I've missed a lot of work in this endeavor and don't have endless leave.

>He propbably would have been much better to start another type of pain medication, in pill form.

Again, that's the doctor's responsibility, not Michael's. The doctor should have known not to start him at such a dose as that or with a medication like that, but to work up to the right one. The Fentanyl might have helped him had the progress been monitored properly. Mistakes like that can kill.

You're right, that is a good site, thanks for posting it.

Re: Don't give up, there is help

BrianG on 11/17/03 at 22:12 (137802)

Hi Sher,

In this day and age, we can't put everything on to the doctor. We have to advocate for ourselves. If we're in too mch pain, then we need to get a famiy member, or friend, to make sure what we take is right for us. Just remember, all doctors are not created equal !!!

And yes, you were correct, titrate is the word you were looking for. We have to ensure our doctors make the time for us. In my case, I spoke to my doctor every two weeks, when I first started the meds. I also spoke with him, on the phone, once a month, to help guide him if I needed an increase. He had done his homework, and knew I would be asking for more pain relief, as my initial dosages just didn't cut it. Of course he was my primary doc, and I had gone to him for about 10 years before I developed PF. I guess he just knew I was an honest person. It's been a year now, since I've had an increase. I don't crave the medication, it's just another pill I have to take. And it just happens to be the only med that helps me at all !!

Regards
BrianG

PS: I feel bad for what happened to Michael. He sounds like he's doing better, but he may want to look for another doc, if he has a pain relapse.