Boy do I feel a bit silly. I thought the patch was localised and essentially numbed the skin underneath of it. I will ask my neuro about all these pain relief options.

Dan it seems that you are very lucky to have something that has been so effective for so many years. Usually things stop working for me after a while.

Thank you for replies

If you really have Fibromyalgia, narcotics are not currently indicated for this condition.

I went to a pain seminar this spring that explained that. Fibro is basically a central error in pain sensory interpretation. The Fibro patients studied had very high levels of endorphins already sitting on pain receptors.

Tramadol is the drug most recommended for Fibro patients. I have a thread here that has more details:
http://neurotalk.psychcentral.com/sh...ad.php?t=20030

I will be seeing neuro very soon,and will discuss all of these things with him, if I can keep his attention for this long.

Mrs. D. I am going to PM you about something regarding medd if that is ok,after I return from swimming.

Thank you

I'm sorry your having this problem with pain and meds. I am on morphine
sr,neurontin,and just started 25 mcg/h fentanyl Transdermal,I feel warm on this,i read on list of warnings you can get a fever from them,but will take temp. amd try them. I have been on a lot of meds. and have had alleregy
problems. So you must write everything your feeling,what is a miracle for
one can be a very bad think. But Mel's Alan is right,and i am so glad Dan has
something to help him,sometimes i think we don't give some meds a long
enough,time to work,i was that way with neruromtin. But that's just me i truly think it works for me. Sue

The only thing I take for the PN pain now is a generic form of Ultracet. That is Tramdol with Tylenol. It works wonderfully well for me. I only have to take it at night and can even skip nights when I feel I don't really need it. The only side I've have from it is that it wires me. Makes me feel wide awake if I take it too close to bedtime. So I take it a few hours before bed and that seems to help. I currently take 37.5 mg of Tramdol and I can't remember how many mgs of Tylenol that includes. That dose lasts for about 8 hours for me. Some days I have to take two tablets but those days are few and far between.

I can't remember any other listed sides for this drug so you may want to google it and see what comes up. And talk to your doc about it. This drug has truly been a miracle for my pain. I can say I've not had any problem with weight on this drug and in fact I continue to lose weight since I stopped taking the Effexor. Obviously no lethargy either.

For the record, I couldn't take Neurontin either. It made me suicidal as well as making my pain worse.

Aussie,

You are not crazy, as some patches DO have to be worn over your painful areas. Lidocaine and Capsaisan patches are worn wear it hurts.

Fentanyl, which is a major league pain killer is worn on a muscled area, such as arm or leg, and is not to be heated up such as with a heating pad. Fentanyl is aborbed by your skin and works systemically. Kids and pets can be poisoned by chewing the patches! Like any pill, they must be kept away from kids and pets. I have been on fentanyl. I am not anymore. My choice.

I pm'd you. Autonomic neuropathy makes things more complex.

meds--

Aussie---I'm up here with insomnia, so I'm writing in a somewhat less than optimal state of mind. So here, goes, but if it's scattered or unhelpful, excuse me because I'm both revved and exhausted.

I don't know what meds you are on, but I know you have a lot of pain, both from neuropathy, fibro, and pn, right?

So, it's important that medications be mixed when we have lots of pain, because different medicines act on different channels.

The antidepressants are all helpful. Lots of people are finding Cymbalta good for pain and depression, and it seems to be replacing Effexor as the most popular antidepressant for depression with pain, or pain with depression. They can both be energizing, and so best in morning. The SSRIs (Prozac, Zoloft, Lexapro) also help, but are losing popularity to Cymbalta. The very oldfashioned antidepressants, tricyclic antidepressants, have a really big advantage for you, I think, because they deepen sleep. I take Amitriptiline, Elavil, at night, and it helps me get through the night. However, I ran out today and didni't realize it. So, here I am, 3 am. I think you said you had a dystonia from an antidepressant; if not you, someone else I read tongiht. That doesn't happen, and I suspect whoever it was was takign soemthing else that did it. The antidepressants are especially good for fibromyalgia pain, and there are reports that Cymbalta is doing great for this. I just read a post of somebody with a near miraculous response to it for fibro, on another board.

Neurontin is a stapl of pain medication, but Lyrica seems to be replacing it. I think people find Lyrica less sedating during the day. I'm not sure, but people here take both. I was started on Lyrica two weeks ago, and I'm still on a low dose. It doesn't seem to be helping me fall asleep, but then again, I'm not yawning during the day.

The combination of antidepressant AND neurontin or Lyrica could be considered a staple in treatment of chronic pain, and the opiates could be considered something layred on top.

They all act on different parts of the pain pathway.

Opiates come in different forms, and it seems that most people on this site like Tramodol the best. We haven't done any pollls, but it's my general sense. It works and it doesn't knock people out too much, and is good to take as needed. It also comes in a longer acting version.

But for more severe pain, the opiate people use and like, my sense, is Duragesic( fentanyl) patches. This is a patch you put on and it releases the opiate slowly and steadily throughout the day.

If you are taking lyrica/neurontin plus an antidepressant, it lessens the amount of opiate needed.

Now these are just generationalizations, and there are lots of other medications out there, all listed by Mrs D in a sticky. But it's rational to combine them, and while people may be scared of taking a lot of pills, it's a way to limit the side effects.

I think it's surprising to many how well Cymbalta works, and I just read on another site a woman with pn who had total relief with the starting dose within days.

Lidocaine patches: I kinow you have pain all over, but maybe somedays one place is worse than others. I have come to really like my lidocaine patches. I use them on the top of my feet, and spots that act up. Sometimes there's a painful patch on a leg, or ankle, or the side of a finger; sometimes, actually frequently, the top of my left foot vibrates and buzzess and itches all together. The lidocaine is fabulous for these little trouble spots.

When I was recovering acutely from the back surgery, there was a time between narcotics and nothing when lidocaine patches on my back helped.

Again, combinations seem a good idea.

A drug that's not generally on the list of pain meds for pn, but which my neuro gives me and I like a LOT, is Klonopin. I find I get too sleepy with Neurontin, and I've not been on lyrica until about a week or so, and Klonopin is a godsend to me. It does just what I need at night. At night my nerves get activated, and that's when they buzz and vibrate. Kklonopin calms them and helps me get comfortable enough for sleep. I know all this sounds ridiculsou, with me writing at 3 am, but it's usually a bigger help than tonight. Tongiht's problem is missing my Elavil because I screwed up getting a renewal mailorder. My neuro is happiest prescribing Klonopin of all the meds also. I don't know why, but he looks pleased when I say it helps, and happy to give it to me. I like my neuro a lot, and have a real sense that he is looking out for me, so these little messages he transmits to me with his enthusiasm or reluctance mean a lot. He's kind of paternalistic, but not condescending, and I find him reassuring. He's prone to saying strange things like: I know you're worried about your _____, but I'd like to see you just get good night's sleep and some relief; so you concentrate on getting sleep and eating wel, and I'll worry about what this means for you.A sort of division of labor. It doesn't necessarily make sense, but I find it assuring.

Jeeze, I AM rambling. I hope I can take this down if it proves incohrent tomrorow. He's the kind of doctor who has lots of experience, and gets on teh phone and asks other doctors questions whil you're in the room, and says things like, well, we'll want to have a look- see at that, your neck, soon. It's probably causing your arm pain, but there's not way I'm letting anybody operate on you just now, and you're in shap for an injection, so we'll just put that on the back burner fo ra while...I never thought I'd appreciate such a "daddy-ish" oldfashioned guy, but I do.

Oy, I am totally off topic of your drug med questions now and rambling, soa few more words and then I'll sign off:

Lastly, about side effects. Provigil is a wakefulness medication, and if the meds make you sleepy, it's a fabulous medication for staying awake. I know the only way I'll make it through a workday tomorrow is by taking a provigil in the morning. I'm going to be tired and hung over and that will help me through the day. If I wasn't prescribed it to use "as needed", I'd be calling in sick tomorrow. But knowing I have it makes a night like this tolerable. Usually, the worst thing about a bad night is the anxiety about the next day and how I'll get through it. Knowing I can rely on Provigil relieves that anxiety. Provigil and the opiates are constipating, and it's important to sto this before it takes over. I think people like fiber and miralax. I like a magnesium supplmenet I get from health food stores, and whenever I take one of these constipating drugs, as I've done tonight, I make it a cocktail with my herbal laxative.

Compared to others on the board, I think my pain is pretty light. It's mostly an "activating" sort of pain, so rather than just dull pain, I get vibrations, little shocks that might itch and surprise, and vibration. The vibration is usually in the feet, except in the morning, when it feels like my whole solar plexus is vibrating. There were times I could have sworn that if I were a Californian I'd be evacuating my house thinking there;s an impending earthquake. But in NY, it's more lik feeling the subway has taken a new detour under my bedroom. It generally goes away when I get out of bed.It's part of the thing that most of my pain feels like nerve fibers are firing irritably, rather than dulled down. Again, Klonopin helps that, and maybe the Lyrica will too.

But I'm not in enough pain to want things on a daily basis, just as needd. Like tonght, when they wre needed, and I'm not hurting at all, but just, well, as I said, "activated".


I don't think you need to delay any of these medications before surgery. Your doctor will tell you what to stop the day of surgery, or the week of surgery. Probably, you'll be told to stop anything that increases bleeding, for instance.

Aussie---please let me know tomorrow if I should rmove this. I can't judge tonight it's coherence and don't want to lead you oranyone else astray.

Pleasant dreams to all you folk out there, quietly in bed, curled under your covers, and fast asleep. I am so bleeping jealous of you !

And, final ramble. I logged on becauseI hd an email telling me someone on another site I read was asking about pain mds for neuropathy. I came to neurotalk to find the sticky to send her, and read your post. I've not even looked for th sticky to send her. Isn't this ridiculous!!

I've tried tegretol, neurontin, ultracet, and vicodin none of which gave me much relief from my pain. One neuro put me on Lyrica which helped with the shooting and stabbing pains which were like pin pricks up and down my toes, feet, and legs, and sometimes into the back, chest, and head. She also gave me Ultracet but for me though nothing I've ever taken gives me any kind of relief from the constant cold in my feet and now my hands too. In addition, I gained some weight on the Lyrica.

After a 2nd opinion from a new neuro he weaned me off of Lyrica, I lost ~8-10 lbs and he replaced it with nortriptyline and substituted the Ultracet with Ultram - he didn't see a need to take acetaminophen together with tramadol (ultram) chronically if I didn't need to do so. I've read that for some people the Ultracet combo works better than Ultram itself - there can be a synergy between Tylenol and Ultram. In any case the combo of nortriptyline and ultram seems to help me with the shooting and stabbing pains but this neuro and a couple of other I've spoken with told me that the cold pain is very difficult to address - sometimes high doses of mexilitine, an antiarrythrmic can help but I've not followed up on this.

I've got an appointment at Johns Hopkins in ~3 weeks so perhaps they can offer me a cause or some relief.


I hope you find some real relief soon with as few SE's as possible but it's a real "crap shoot" at times to find a good drug or combo - doesn't help that neuropathic pain is about the most difficult to treat.

Alkymst

To: Cyclelops:

You said: "Fentanyl, which is a major league pain killer is worn on a muscled area, such as arm or leg,"


Now I have a question about this. 6 years ago, when Alan (because he was about to commit suicide, his pain from PN was sooooo bad), he went to the pain management department of Coney Island Hospital in Brooklyn. The pain management doctor there explained about Fentanyl, and where you put these patches. He said "clip the little hairs in the area, and peel and press and it will stay for 3 days". Knowing me and I like to make sure of things I distinctly remember saying "Doctor, where exactly should Alan put these patches, is there a specific place that is better than anyplace else on the body".

Here are his exact words. "Well, my patients usually put it on their upper chest, near their shoulder. That's easier to reach for them" And then he continued "But it really doesn't make one bit of difference where you place this patch, because it's absorbed in the body (then he went on to explain half lifes, etc.). Then, he called in an assistant and he was talking about the fentanyl patch with the assistant (another doctor who was there to learn all about pain management). Alan's doctor explained "she just asked me if there's one place better to put this patch on, than any other place on the body, and I was just explaining to her that he could even put it on his ankle, it would make no difference".

I will never forget that conversation (I'm extremely good at remembering dialogue once I've heard any conversation, I have no idea why, I can just close my eyes and I can play the whole stuff in my head).

So Alan signed the contract with the pain management guy, got his prescription and for almost 3 years, with various degree of upping the dosage and sometimes making it every two days (forget about what the pharmacist did when he read THAT prescription). But Alan got whatever the doctor wrote.

He put the patch, always, on different parts of his chest. Switching from left to right. No problems.

So now I read your post about how you put it on a muscled area, like leg or arm. Have they changed the way they explain this patch to people?. It's been 6 years for us.

Thanks much.

Hope you are good.
Melody

I found your post very helpful and enlightening. There's *much* good info here. I especially like the way your doctor handles things. Anxiety can add to the problems and he wants to relieve whatever your causes of anxiety might be.

I found your reference to Provigil interesting. Is this the one (newest one?) they use for narcolepsy and such? I have nights where I'm up with the PN or because I may have forgotten to take my Ultracet early enough in the evening when I need it. I'm getting real good at knowing when I'm going to need my Ultracet and taking it early on so that I have no sleep issues. But there are nights.... And the next day is agony.

Lyrica I've wondered about but there are some sides that worry me and weight gain is one of them. Good to hear it's having some good results though. And along with what you said about the Cymbalta. It's nice to know I have some alternatives to look at if I need them.

Neurontin is a big no-no for me. The B-12 issues and mostly that it made me suicidal.

And yes, Tramadol seems to be a popular choice. I found out about it by accident. I was given Tramadol after my Carpal Tunnel surgery a year ago. I didn't use it then cause it didn't seem to do anything for the post-surgical pain. However, after reading about using Tramadol on this forum I gave it a try. I was stunned!! It worked like nothing else had. Even the Neurontin. For me anyway.