Oh no tying here, I do understand. And I figure if a doctor feels it necassary, it probably is. And if I were in your situation, going peacefully in my sleep may be a blessing. And you will probably do fine on what you're on.
My grandma had MS for 20 yrs. Made peace with the fact it would be what kills her. Suddenly she finds out cancer has been eating her alive for some time. Suddenly she finds out MS won't be the death of her after all. Went through surgeries, therapys, could have squeezed 5 or so years out. But she took her daily ration of her oxy, soma and klonipin. She never woke up.
I am sorry for my bias, I know these meds help. I take them. But certain mixtures, I just can't help putting my $.02
Best of luck&i mean it.

Your situation is extraordinary even for an RSD patient and is not comparable to the OP. All our situations are unique though, that's why a doc needs to carefully choose our meds. Your tolerance and need are different than mine. What you need to take to get through the morning, could kill me.

I've been on the same meds and dosages for years, but when I was still trying out new combos, I had docs that made conversion errors and simply made errors on the directions. I had a pharmacist that was very good, caught them, and refused to fill as directed. (Not the norm in my experience.) He refused to fill one customers meds as prescribed and instead of going back to his doc, the young man found another pharmacist. A few months later, one of the clerks read an article about him in our local paper, that he had died from those same meds.

I understand what your saying completly, and people need to be cautios obvisly. These meds are HEAVY meds, meds that you dont take lightly and meds that shouldnt just be taken because your doc hands you them, and not everybody should take them or be on a combo like mine. I know having 2 muscle relaxants at large doses of course is always a risk, the 1 alone is a risk (soma) for anyone. The valium is also for my seizures, its complicated because taking opiots have a risk for seizures, i already have epilepsy, so then i have to take these heavy narcotics that add more risk to having seizures, but then i have an increasingly higher risk of having seizures when my pain isnt controled. So it really is a very fine balance and a hard one. I was a PT tech, so i knew about all the PM stuff befor my crap even happend. I would never recomend starting out on heavier narcs when just dxed. And I would never recomend a combo im on unless absoutly nessisary and then be sure you have all your drs watching all your meds. The combo im on was my last resort rout unfortantly, i had to go this path much earlier then I thought, but given my situation, not only is the rsd getting worse, so are my complications from the surgeries I had. So thats why ive landed where im at, and until I can get in to see Dr S. in philly in 2yrs to hopefully have some diffrent options, then im stuck where im at. And even then hes an RSD doc, he cant help the prevois damage thats already done and still going.

And im very sorry about your grandmother

Currently I am taking
Tegretol 200mg 2x a day
Cymbalta 120 mg 1x
Norflex 100 mg 2x ( during day)
Flexeril 20 mg 1x (at bed time)
Lortab 10/500 mg 1-2 pills every 4-6 hrs

As far as "pain relievers". I started with regular strength Vicodin when I originally had my nerve entrapment that started all this ( prior to my surgeries or RSD). Then I went to Vicodin ES. I have been on the Lortab on and off for a few years and on it daily for basically 1 1/2 yrs. I'm trying to work with my PMD to change that around as I am taking so much daily I'm concerned about my liver. This is becoming an uphill battle.

I've tried Tylenol 3 and Percocet 5/325. Neither were helpful so it was back to the Lortab.

I've taken
Lyrica- horrible weight gain
Dibenzyline-worked great for night sweats and shocking pain

fbodgrl,

It would be a simple switch for your doctor to order Hydrocodone/Acetaminophen 10/325 mg to cut down on the Tylenol content abit. It is sold under the brand name Norco 10/325mg. That would mean you could use up to 12 pills a day of the Norco 10/325 mg without going over the critical 4000 mg limit of acetaminophen in one day. That doesn't mean I still wouldn't be concerned about the ongoing "highish" amount of acetaminophen, but at least you would't be hitting the maximum recommended dose.

When I was at that stage, when occassionally I would need to take 2 tabs in the same 4-6 hour period, that my neuro added some MS contin ER to the mix. I don't know how your doc would react to the request for "more" meds or "increased doses. An important thing to remember when switching to a longer acting med is that one will probably still need some of the shorter acting med to use for breakthrough pain.

A sample of an "ideal" plan for someone currently taking Lortab 10/500 mg every 4 hours (6 times a day) consistently would be switching to MS Contin ER 30 mg twice a day. The total of hydrocodone 10mg 6 x day = 60 mg, so the MS Contin 30 mg twice a day is an equivalent dose. For many, the MS Contin ER doesn't last the full 12 hours that it does for others. In those cases, MS Contin 20 mg 3 x day would allow coverage every 8 hours and still total the 60 mg a day. I would still want to have 1 or 2 Lortab available per day for breakthrough pain. These "numbers" are also for someone with reasonable control of their pain who always uses at least 60 mg of Lrtab per day. If you consistently use 9 Lortab a day to account for the times when you take 2 at a time, that would be 90 mg per day, so an equivalent order on MS Contin ER would be 30 mg 3 x day. This is just a mini lesson on narcotic equivalent dosing and obviously not any comment on what your doctor would find to be a good treatment course.

Just to add, if a decision was made to go with Oxycontin ER, that dosing would be a little less, usually figure 2/3 of the equivalent narcotic dose. Some docs are more hesitant to order OxyContin ER just because it's more famous for being a drug of choice for people who abuse drugs.....and what the thugs try to steal from pharmacies. I don't get it myself.....an OxyContin ER 20 mg pill crushed wouldn't get an abuser any higher than a MS COntin 30 mg pill, but maybe druggies aren't smart enough to figure that out.

I don't know how comfortable you would be or your doctor would be with having that discussion regarding the switch to longer acting meds to cut down on your acetaminophen intake. At least suggeting the switch to Norco isn't "asking" for "more" meds or "stronger" meds. If it helps you feel more confident in the discussion, realize that asking for a switch to the longer acting meds doesn't actually involve taking MORE narcotic per day, just a different type. Good luck with trying to find reasonable pain control.

Well, I've just learned something.....so thanks for your post !

I didn't know that about dibenzyline.

Why aren't you still on the dibenzyline ? The occassional day sweats and overwhelming night sweats (yes, I'm a woman of a "certain" age, but, no, I am not menopausal) are a drag.

I have high blood pressure, currently well controlled with a beta blocker, but if I could get that EXTRA benefit from switching to an alpha blocker, that would be cool.

*****very personal, don't read if you are easily offended/grossed out*****
Did you notice issues with the possible side effect of trouble with having orgasms ? I have no, um, "social" life right now, but I do have this fantasy life about finding love again post divorce. Not having night sweats would be a plus, but that might be a tough trade off....

Finz,

I just wanted to chime in that when I tried the switch from Kadian, now available as generic MSER, to a comparable (ie reduced mg) of Oxy ER, I absolutely felt more intoxicated, which I hated. Perhaps that would have gone away had I stuck with it, but I was satisfied enough with the (then) Kadian, that I discontinued the test after just a few days. I was unable to drive at all when taking the Oxy. But, this is again an example of how we all react differently to different meds. Those little tweaks of chemistry can be a big deal.

I took it for around 4 months. It us very expensive ( about $800 for a 30 day supply). My insurance did cover it though. It is listed on the drug info that it can cause cancer or raise risk. So I went off it. My night sweats are minimal now. Before I started taking it I woke up basically every night soaked in sweat and having to change my clothes, etc. My shocking pains are view now as well... strange. I'm not sure if the dibenzyline" fixed" those issues or if the RSD just decided to stop those things for the time being. I know there are a couple other blood pressure type medications along the same lines as the dibenzyline that are suggested, but I am not sure on the names. They also just had come out with a generic when I had stopped taking it, but the pharmacy wasn't able to get it yet.

As far as the other question I have no umm social life to speak of so it is difficult to give an answer on that

Hi, this is my first proper post so be gentle lol

I've just had my first ever positive pain doc appt. I've had CRPS for nearly 2 years, and hv tried a few different meds.

Amitriptyline gave me horrible dry mouth and tiredness. Seemed to help at first, but only for a couple of months before becoming useless.
Lyrica (pregabelin) seemed ok for a few months (apart from the weight gain) but then I had awful electric shock pains throughout my body on several occasions and doc took me off asap.
Gabapentin seemed ok for a bit but I started having bad abdominal pains and gastro probs, settled then came back again. I've cut my dose by half and am on way to cutting them entirely - halving dose has not affected pain or symptoms so I figure they are doing nowt for me... Pain doc agrees and is keen for me to get off it.
I wonder about all these horrible drugs we have to put in our poor bodies...all those side effects do their own damage. But pain is the biggest enemy so you do what you have to.

I have finally been given lidocaine patches, but warned not to use unless I have to as they are very expensive and docs don't like prescribing them for frequent use. Good old nhs lol. I haven't used one yet, I'm not sure about putting it on if skin is very red/hot/sore. Hoping that is kind of the point!

I started CRPS in my knee after an arthroscopy. It's now in my whole left leg and foot, and has started up in my left arm over the past few months. My back and face on the left side are also super sensitive and painful at times. Maybe I am looking at bilateral CRPS?

Good luck to everyone and thanks for all the info, really helpful

Bram

I wonder why doctors don't use them for frequent use? If its $, it is sure not their business. My doctor gives me a patch a day plus ointment. I have that stuff coming out my ears, and there is no warnings saying frequent use is dangerous.

My doc tells me to place the patch, not on the affected area, but along the nerve path that leads to the affected area. Study where major nerves run along your body. Try to get on top of this as much as you can, education is everything.

I don't know about where you're at, but here, the ointment costs less than the patches.