I have an extremely high tolerance to narcotics. My doc said he will not up my meds no matter what...I had to beg in tears about getting a rescue med. The reason for this is because 1: lots of medical problems within the last few years -gall bladder surgery, tonsil surgery, 3 back injuries, 2 neck injuries, endometriosis surgery, 2 surgeries on my stomach because I was having chronic stomach pain...and all of these I had to take narcs for. With the rsd I started out on vicodin 3 a day, then they upped it to the highest form of vicodin, then it was dilaudid, then methadone, now ms cotin, usually the morphine works well but now that I have spread to all limbs and have lower back herniated disc I am having problems. I have had to use the rescue med almost every day and he only gave me 10 days worth out of a month. Does anyone know how to decrease your med tolerance and still stay within a tolerable pain level plus not go insane? I am scared...where do I go from here. I have to wait for approval for a scs from worker's comp, and I have this pain clinic eval to do where they have already alluded to be being a drug addict. I worry that things will get worse, especially since I am just beginning with the rsd in my legs. Also, forgot to mention all the other meds like Elavil, neurotin, lyrica and such I can't take due to side effects...
Hope you are all doing well and having low pain days,
lots of positive thoughts your way,
Jennelle

Jennelle,
First, it sounds to me as if you've got to just stop and take a breathe. You've got to get someone on the phone, be it your doc, or your WC adjuster, (I'd start with your doc's office), try Printing out what you just wrote. And explain it to them like that. It's OK to get emotional, you're in pain.
What's he want you to do @ the end of ten days?
Call him! (Do you have Anyone who can Advocate for you?)
Your Doc must know your condition!
(You don't mention what mg you're on, or your total meds, and, I don't know if that's the point here anyway. You Doc IS the expert.)
See if you can get the pain clinic eval moved up sooner!
Sometimes you've got to shake the tree!
I think that you're at that point!
It's OK, You're gonna make it!

Jennelle, We'd all help you if we could.
Make a few phone calls, and document them.
Do you have a lawyer?
WC will punish you w/o one sometimes.
But, start out by being honest, and don't come accross as a drug seeker, just that you're in over the top pain! Honestly!

I wish you the absolute best, other's will have better idea's than I do, but keep us posted, huh?

Take One step at a time, and you WILL move forward!
I promise!

Pete
asb

Hi Jennelle,

I'm in a similar situation to you right now. I have a very high tolerence to medications and my doctor is always having to increase them to try and make them work but by that time, I am either way too drowsey to do anything or get horrible side effects from them.

I'm not on any medications at the moment as I haven't found anything that has worked for me really. I take Ketamine when I am in a really bad pain flare (i'm only allowed to take it then as my doctor fears that it could affect my hormones because of my age) but that doesn't work as much as it used to. It still lowers my pain a little but no where near as much as it used to so I have a feeling we will have to speak to my doctor about possibly increasing it again.

It was my decision to come of the meds. My Doctor said that I could stay on them but I decided to come off them to see if they were actually helping. It took a while to come off the meds but I didn't notice any changes in my pain what so ever and didn't have to deal with some of the additional side effects. I still have LOTS of pain on a daily basis (it is usually an 8 out of 10) and it's hard not having meds but they didn't work so I didn't see the point in being on them personally!

I agree with what Pete said, I would call your doctors office and ask to speak to your doctor and tell him about how much pain you are in and that you don't have anything to help really.

If you aren't happy with your doctor, then I would try and find another. I know it is really hard and stressful (been there, got the tshirt!!!) but it will probably help you!!

Have you looked into any other treatment options that don't involve taking medications such as HBO etc?? That might be something to look into if you can seeing as the meds dont seem to help you.

I'm sorry that you are going through all of this right now and hope things start getting better for you real soon!! If you ever need/want someone to talk to, please know that I am here for you because I DO understand what you are going through!!

Please keep us updated when you can.

thanks guys, I am just scared because the meds do work but my doc keeps saying they don't....so he doesn't see the point in me taking them. He told me I was going to have to come off them someday and I wasn't going to like it. I just wonder if they don't work why do so many people take them? I have tried all the other meds he has suggested and they don't work and the side effects are awful. I almost feel like he blames me for this sometimes. thanks again
jennelle

Hi Jenelle,

I don't really understand why your doctor is saying that you shouldn't be taking the meds even though they are helping you?!?!

Surely if the meds were working, he would be happy for you and want you to stay on them???

I know that not everyone has good results from pain meds (me included) and don't understand why some people take them when they don't do anything and cause horrible side effects but if they were working, then surely your doctor would be telling you to continue taking them as they are improving the quality of your life somewhat??

I'd definitiely ask your doctor why he is saying that you should come off the meds if they are helping you - it seems a bit strange that he would suggest that to me! I could understand if he told you to come off them if they weren't helping but if they are, surely he'd understand you wanting to stay on them!!

Everyones different with RSD. Meds work for some whilst they don't work for others. Surely your doctor should know that if he is an 'expert' in RSD!! Most people are taking medications to try and 'control' their RSD!!

I'd definitiely speak to him about his reasonings and if you aren't happy with the help and treatment you are getting, try and get another!! You shouldn't have to deal with this stress on top of everything else!!

Take care and you are in my thoughts!

Jenelle you are unfortunately working with a doctor whose ego is bigger then his brain or his heart. I know that it sounds like an impossible task, and perhaps a very scary one, to find another doctor, but until you do this doctors inflated opinion of their knowledge will cause you to needlessly suffer physically and MUCH MORE IMPORTANTLY you will likely suffer emotionally as he/she discounts your pain/situation/suffering. Eventually you will find a doctor that will work with you and this is the first step to having any freedom with this condition.

Good luck and I am so sorry as I went through dozens of doctors before I found one that is worth visiting.

Jennelle - I have a similar problem. Meds do not work as effectively for me as they would for someone else. I need 8 percocet per day to survive. Most people would be bed ridden with that. I atleast can have a "normal" life. I am never pain free but can do most things, i.e. grocery shop, make beds, laundry, etc. When I had my 4th child, the epidural did not work and I had to be knocked out because I felt it! For oral surgery I needed about 10 shots of novacaine plus the gas! Not everyone understands and, as you said, think you are a drug addict. My sister has MS and has the same problem with meds. We both have the same doctor and he is understanding but when you go to the pharmacy, you see the look they give you and it is very degrading. When I had recent surgery I was very lucky in the recovery room with great nurses who understood. They gave me morphine upon my request and told me to let them know when I needed it. Best of luck, Linda