Hi, everybody:

I have had RSD in my left knee/leg since August 25, 2001. Later, my RSD became generalized to my whole body.

I have been using strong narcotic painkillers (now Duragesic and MSIR) since September 2002. Right now, the dosages of these two medications I am using are:
-Duragesic (fentanyl sustained release) 125 mcg: one 100 mcg patch and one 25 mcg patch every 72 hours (3 days)
-MSIR (morphine sulfate immediate release) 30 mg: one capsule once to twice daily

I take other medications for my RSD pain (off-label) to attack my RSD pain from different angles:
-Flecainide sustained release 200 mg: one capsule daily
-Propranolol immediate release 40 mg: one tablet twice daily

I take Keppra and Rivotril for my epilepsy.

My question is:

Is it dangerous to use strong narcotic painkillers at my dosage and for the rest of my life? I am a 37-year-old female. If yes, what are the dangers?

I am worried about my doctor using the "danger thing" to wean or cut me off of my narcotic painkillers, which are the only medications effective in controlling my RSD pain, since I cannot afford the inpatient RSD ketamine coma procedure at about U.S. $ 50,000. I cannot afford the outpatient procedure either. My income is very low; I just earn the minimum wage, minus what the public health insurance company takes from my salary every month.

Feel free to say everything you have to say about the dangers of strong narcotic painkillers taken at my dosage and for years and years and years (for the rest of my life in fact). Thanks a lot for your information.

These are questions that should be directed to a physician. If you are not comfortable asking your current doctor please seek a second opinion. Relying on a self help group for answers to these questions is very risky business.

I agree that you should seek a second opinion from a doctor. But I will say this: (and this is what I've witnessed my step-father go through) The longer you are on narcotic pain medication the less effective it will be, and the more pain you have the more you'll need. Its a dangerous cycle in that soon the dose of morphine/other narcotics youre on will no longer be effective, so the doctor gives you more... Overdose on these medications is a very real and scary possibility. Now Im not saying this will happen to you, but its something I've seen happen, so its very scary to me! I wish you lots of luck!

I question these medications just like you do. There are quite a few posts around that are talking about this. This site was created to talk, without influence of doctors so we can learn from each other. Of course ask your doctor all questions too. All these medications carry risk of one kind or another. I am having issues right now regarding them as well. I have more medication for pain, but I am afraid to take it, knowing that after this surgery I will be weened down. It is awful to withdraw from the medications. All issues have to me ckecked with a good pain specialist, so you stay out of as much trouble as you can. I have degenerative joint disease which is progressing and I am fighting taking more medications and living with more pain because of my fear right now over the reduction problems I may have after the proceedure. I am in touch with my doctor and I tell him everything. However, I will be on these medications one way or another if I intend to stay walking at all, for the rest of my life. Right now I am at a stand still, not knowing what to do really, as I am trying to prevent future withdrawl problems, while geting some kind of pain relief so I can continue to keep on trucking. I am going back in to talk about this issue, since I really don't know what to do. These medications do offer relief, to get you through a day. As your pain levels go up however, they help less as time goes on. That is the stiuation I am in. Even with the best doctors in the world, you have to be careful when taking them, keep a pain journal, and stay close to your doctor.
I do wish all pain patients all the best. These issues are not easy to address. ginnie

I just found out the hard way about different painkillers and what they could do to you. On the 23rd of Febuary I went to have surgery for an abdominal problem,when I was in the O.R. the surgeon started the procedure by cutting an opening on my navel-(bellybutton) when all of a sudden I had a heart attack!! They started yelling for the paddles to shock me,(I was told this) Then before they could shock me my heart went back to it's normal rythem. Which I was told only happens to about 98% of paitents. When I fianally got back and put into a room I was told that the reason it had happened was because I had a severe low pottasium count,and one of my meds was Methedone. I am also on alot of other pain killers,that keep my daily pain level at about a 6-7. Right now I am being weaned off of the Meth and seeing a Cardiologist in about 2 weeks. They also sent me home wearing a 24hr. Holter Monitor. I had just lost my Dad to a heart attack in January. With all that said,yes I think you should get different opinons and be direct with your Dr's!! I know that I am addicted,however I am 57 and if the pills that I take now only keep me at a 6-7,I can't even imagine what my pain would be without them?? I have built up such a high tolerance to my med's that I have to find something else?? I have seen different pain Dr's,only to find that they wanted to put a stimulator in me. Sometimes I just think that they are trying out different products from the rep's that come in?? I have an apt. with my primary Dr. next week.

Test dumbies.
Does anyone else feel that they are,like me?
I was one of Dr S's (in Philly) TD.

They'll try everything, but no cure is in sight!
That's why they try everything, no fault of the doctors, they truly want to know what will work!
But, all they can do so far, is offer us temporary relief....

And, Thank God for that!

Communication with Your doctor is paramount!
Don't think that you're annoying him/her when you call, that's why he has secretaries, or whatever they're called (sorry) no disrespect meant..... they're the best!

Keep in touch!

We have no docs here, so the best you can do is communicate with yours!

Make NOTES!
And,, of course, you all have computers, use the calendar function, and note daily on your pain, and symptoms. (I have a Mac, which macs it simple). that was a little joke....


Print it out, and take it, and give it to your Doc~!

It will become part of your permanent school record!
And that's a good thing!


Wishing you all well!

Pete

ASB

Hi, CRPSjames:

In the United States, my American primary care physician would prescribe my strong narcotic painkillers for me, with the agreement of my American pain management doctor.

In Tahiti (French Polynesia), my French primary care physician prescribes my strong narcotic painkillers for me, without working with "the" pain management doctor. This pain management physician, who is neither knowledgeable nor caring, is not my doctor. Not only he does not agree with the American multiple doctors' diagnoses of RSD and choice of treatment, he also spends his time criticizing them. I do not get along with this hateful pain management physician.

I chose not to ask these questions (the ones from my original message) to my French primary care physician, who prescribes my narcotic painkillers now, to avoid him thinking I do not like them and want to be weaned off of them. I just wanted to know their "bad sides", if any, from other patients using them or from medical professionals using this site.

I cannot get a second opinion. In the past, about 220 doctors accepted the public health system's insurance from French Polynesia. Since a few days ago, only about 15 doctors accept this insurance. I cannot afford getting a second opinion. The public health system's insurance from French Polynesia only pays for part of the consultation fee of one doctor.

I understand that you cannot get a second opinion. Therefor it is necessary to make sure you keep the communication with your doctor open. I address my concerns about the medications, directly to my doctor. He does not mind my questions, and answers thoughtfully. If you keep a pain journal that will help when you talk to him. Pain medications especially if you are on them a long time, need to be monitored on a regular basis. In my case, I will most likely be on them the rest of my life. Of course I am concerned about long term effects. Don't be afraid and think your doctor will wean you off the medications just because you ask questions. I think the opposite would happen, he would respect you more, because you brought up the questions concerning long term use. The doctor wants to give relief, not hurt you. I understand the fear of being weened off the medications too, and the resulting pain issues and withdrawl issues that would bring about. However I still think the best way is to tell your doctor what you are thinking and why you are a bit worried. Trust happens over time, and the way to gain the trust is to speak the truth about all of it. This is just my opinion. I do wish you all the best. ginnie

Good points Ginnie. Speaking from personal experience, many times when we don't ask our doctor important questions it is because we really do not want to know the answer.