[dawn3063]

Ok, I have been dealing with this TOS stuff for a long time and recently with a RSD diagnosis... But I am new to seeing a Pain management Doc...
I'll be strait out with it... I need something different for my pain. I take all the neuropathic stuff, I use lidoderm patches, I have a 10's unit and the only pain med I have is Norco that was prescribed by my neurosurgion and it is just not cutting it. I take it and it works initially but it only last for maybe 3 or 4 hours at the most and then my pain levels are climbing again. My pain levels were staying at a 4, 5 but now they are around a 6, 7... Prior to the RSD dx I had been taking maybe 1 norco 2 times a week and now I take 2 to 3 a day.
What I would like is to ask for something that would last longer not necessarily stronger... I don't want to look like a drug seeker to my new pain doc but I do want something that is going to help...
Any suggestions would be great...
Thanks for your help.
Hugs to you
Dawn

[redjpwranglergirl]

Dawn,
I don't know if this will be of any help to you but it's something I've thought about starting a thread on, because I'm curious about it myself. And that is Toradol. I don't know if you're already taking it or have tried it. When I had foot surgery, I was given Norco and when that didn't help, Demerol. That didn't help either (and I am not on ANY narcotic pain meds for my TOS or other conditions) so my dr. gave me Toradol and that REALLY helped, although it put me to sleep (which is not necessarily a bad thing! Especially since I was IN PAIN). But, the thing is, when I read the print out that came with it from the pharmacy, it had some severe warnings about taking it more than 5 days and I read the same thing when I looked it up on the internet. I see that alot of people on here mention taking it and I'm wondering how much it really helps and what they know about these warnings- which seem to be that it can cause ulcers and stomach bleeding and also kidney problems. It really did help my pain alot but doesn't seem to be something you can take long term.

[ocgirl]

Dawn,
I think you described it beautifully.

In my experience I just told the doc how my life had gone down hill since the pain increased, what I couldn't do. I couldn't sleep well. I was not able to sit in a chair long enough to enjoy my son's banquet without taking a Darvocette. Just tell the truth. I wouldn't request any specific drug though. This is what I have read on the chronic pain forum.

My doc didn't want me to take that much tylenol , so my meds were changed.

[johannakat]

******warning, kids are all over me, so this may not be compeltely sensical******


I think Toradol is essentially the equivalent of ibuprofen (at least that's what my surgeon told me) If it isn't, i am curious to learn more....

I was on IV toradol every 6 hours at the hospital, on leaving the surgeon told me to take 800 mg ibuprofen instead, bc it was the same thing. Don't know what does of toradol i was on, though.

at one week post op, My Pain doc then told me the tylenol in the vicodin and the ibuprofen were the most dangerous things i was on.... I was having a pretty upset tummy as well....(i take Opana ER (no tylenol)for baseline and vicodin for breakthrough) and to stop taking the ibuprofen one week post op.

I have to say, the pain was all pretty tolerable until then. The narcotics just haven't gotten it as well. still, an ulcer wouldn't be any fun...so take your chances?

Shelley was on something for inflamation...was it celebrex? I was planning to ask about something of that sort at my next visit.

Johanna

[tshadow]

Hi Dawn,

I am not sure if you are Dawn from Riverside CA, but it doesn't matter that much, I feel really strongly about issues regarding TOSers getting appropriate pain relief for the level of their pain, and, not getting treated as drug seekers or given the brush-off.

For the first 1 1/2 years I was given no pharmaceutical relief. I took 800 mg.s of Ibuprofen every 6 hours around the clock, and did so for 5 years until just recently when the pain to my liver was so acute I decided that I needed to pare down to just the most necessary meds.

So here comes the part where I put my heart and my privacy on the line. I will assert that without waiving my entire medical privacy, or any portion other than what I am putting down here and do not wish to discuss further, I personally feel it is VERY important that somehow we share this information amongst us so that we can gauge what we will personally decide is for us for our pain management with our own doctors.

So when I finally got to see a pain mgt. doc., we quickly ran through codeine, Kadian, Norco, etc., all failed miserably to help as their cycles were too short. I was in a constant state of chasing my tail to try to get a stable base. And I describe my pain as constant, usually a 5 - 7, but at least 5 days a week it hits a "suicide pain" level where it's just off the charts, and I'm in bed, eyes closed, begging for God's help.

My current meds are:

FOR TOS SYMPTOMS

Ibuprofen 3200 mg per day (stopped)
Aspirin 2 tabs per day (stopped)
Oxycodone 160 mg per day (never raised for 2 yr.s)
Endocet 5/325 mg X 2 per day (breakthrough, I use them in batches rather than 2 per day. When flare hits, then I'll take them until I get a handle on them. They make me itch terribly now. Like the Xanax below, I don't use this daily, as I when I use it, I want my body to react and not be already tolerant to it.)

Tizanidine 12 mg per day

Cymbalta 120mg per day

Topomax 50 mg.s for nerve regeneration

Butalbital very occasional for Migraine

Xanax .5 mg 1 times per day for RSD. Sometimes I'll go long periods without this, and then, if my RSD or fibro shifts up into over-drive, then I'll need this to keep me from running down the street crying. Also helps if I've been up for three days with no sleep from pain, and I'll use it to finally force myself to sleep. But I don't use it "daily" as I don't want to become addicted in the sense that my body doesn't react because it's too used to it.

Lunesta 3 mg per day (I don't use this every night. Again, I was the punch when I really need it to overcome days of sleeplessness. When I have taken it every night for a period of time, it just stops working, and I feel like I need to take two. I don't want to do that.)

Colace 2 tabs per day (I have developed colon problems, despite a lot of attention to psyllium, fruit and veggies. Nurse now cleans and tears lettuce in large bags for me to have to make salads, as well as calorie free Jello with rough fruit inside. Next is a colonoscopy. Nurse said I must take the Colace as my meds have resulted in a state of constant irritation.)

Lidocaine patch 5% 1 patch per 12 hours (When first sick, these didn't work for me. But now, they do! I put them on the "hard lumps" that erupt on the usual areas. I admit sometimes I've had more than one on. Shouldn't do that, as I'm alreay allergic to lidocaine, but so far no reaction on the pads themselves.)

FOR NON INDUSTRIAL SYMPTOMS

Levothyroxine 100 mg per day (was 25 mg. before TOS.)


FOR URINARY SYMPTOMS (Only when present. Was a real mortal risk last yr. Basically, due to pain, and due to oxy, I had stopped urinating, and when I did, I had to jump around to make a flow. Then, there was an incomplete evacuation. Doc helped me by making an hourly schedule to "try" to urinate, which included night-time, until things returned to normalcy and various organs completely healed. Now, if I feel a twinge of infection, these are used.)

Macrobid 1 per day

Phenazopyridine 200 mg per day

Minocycline 2 per day

BIG WARNING ABOUT LYRICA

For me, I was put on Lyrica for nerve regeneration and the damage that had increased to my feet. Within 6 months, I gained 60 lbs. I also went from a normal (less than 99) blood sugar, to 400. So I was now Type !! Diabetic. I asked my doc - none of them noticed any of these problems - and he did not attribute it to the Lyrica! Instead, he told me to exercise and see my non w/c doc.

So I hit the internet and there it is, there are a bunch of these meds that cause us Type 11 Diabetes and severe weight gain.

Seroquel is another med to fear.

These are truths to me, and may not be for you. You must talk it over with your own doctor, and cannot take what I'm sharing as anything more than anecdotal, and surely not something you'd copy just to copy.

I have heard from others that "Opana" is a good med. Never tried it. I know others on Methadone, and I don't want to go that route.

I had GREAT relief from BOTOX! I had shots all over my neck, shoulder and back. I honestly finally got some benefit where I had never had ANY benefit from any PT, etc. So I'd like to do the BOTOX again.

I'm a right rib-resection with some scalene removed, April 06. That did remove almost all of my previously constant headaches. I have better circulation to my arm / hand. Otherwise, no improvement. But I'll take what I can get.

So to end, I hate living in constant pain and never, ever for the last 4+ years feeling 100% pain free for a substantial period of time. (I mean for more than an odd hour.) I want to be me again! I want to volunteer with children, I wanted to learn about the World Court and move my work in that direction. I just want to go swim again and breathe a deep breath without pain...

The pain docs really don't understand. This IS NOT AN ORTHOPEDIC ISSUE, although a lot of the pain feels like that, there is also that nerve pain that's just a real gift from hell!

If your pain doc will not help you adequately, seek another. Warnings would be to never argue or raise your voice to Doc or staff - not that you would. Stay strict on the schedule they put you on. Don't let the dog eat your pills - I have a locked bag that goes every I go - even in my home, sadly. You can't trust even family, I learned. And even one pill off could be an excuse for the doc to drop you. Don't cancel or screw around with appts. - that get's them in trouble with the Feds. Remember they are monitored closely for their control drug prescriptions, so be a helpful and courteous patient. Obviously don't mix alcohol. And be careful with nighttime dosages - my set of drugs could have an easy death by "toxic mixture", if I were to throw on another pill or two I forgot I already took, so a mate can help with that, or those pills boxes the seniors use. Also, when going to the appt. itself, having your mate there, if they are well-dressed, calm, etc., they can sometimes verbalize your pain symptoms better than yourself and they also take away some of that drug-seeking baloney.

God bless you and I do hope you get some relief via this process. It may or may not be a permanent solution - I'm now going to get detoxed and see where I'm at - but take ALL of this One Day At A Time.

[ocgirl]

Be sure to ask your pain doc how they feel about the diagnosis of thoracic outlet syndrome. If they say anything that indicates that they don't believe in that diagnosis and you must have a nerve root injury or some other nonsense- run don't walk out of there never to go back.

My first pain doc didn't believe in the tos diagnosis and said I had a nerve root injury. No matter what documentation I brought or he ordered ; he would never believe that what I had was tos. At first I thought it was ok as long as he controlled my pain.

But, then my pain started increasing. Because he didn't believe in tos he would not prescribe the doses needed to keep someone comfortable with severe tos. In fact when I started seeing Ernestina Saxton M.D. she said I was on half the dose I needed.

I had to move to another doc when it became apparent that because I refused to have nerve blocks I was not going to be a money maker for him. I feel he wanted me to go away and the way he did that was to ignore my statements of increasing pain and debilitation.

[dawn3063]

Red, OCgirl, Johanna and Tam- Thanks SO much for all of your responses... and Great advise...

I just had my Third and final Stellate Ganglion block this morning and I'm feeling kinda beat... But I did want to chim in and let you all know that I did appreciate all of your responses... Oh, Hi Tam.. Yep, that is me acually from Rancho Cucamonga I was at your TOS gathering..

I'll write more later once I'm up and functioning again.. I do see my PM doc in another week and half so by that time I'll have a good group of questions for him.. Bye for now off to bed for a nap 4am came too early this morning..

Many Hugs and Thanks again...

Dawn

[tshadow]

I'll leave my drug stuff up for a day or two, and then take it down for privacy reasons - but anyone can PM me for it.

It's important to me to share because I had no idea why the usual pain meds were not even touching my pain, and thought I was the problem.

The problem was that this pain I have is so high - and many other TOSers - that we need it to be addressed without being called "drug-seeking." I feel that if we know we have eachother to back this up, we can walk in with a stronger sense of self.

God bless.

[beth]

Originally Posted by ocgirl

Be sure to ask your pain doc how they feel about the diagnosis of thoracic outlet syndrome. If they say anything that indicates that they don't believe in that diagnosis and you must have a nerve root injury or some other nonsense- run don't walk out of there never to go back.

My first pain doc didn't believe in the tos diagnosis and said I had a nerve root injury. No matter what documentation I brought or he ordered ; he would never believe that what I had was tos. At first I thought it was ok as long as he controlled my pain.

But, then my pain started increasing. Because he didn't believe in tos he would not prescribe the doses needed to keep someone comfortable with severe tos. In fact when I started seeing Ernestina Saxton M.D. she said I was on half the dose I needed.

I had to move to another doc when it became apparent that because I refused to have nerve blocks I was not going to be a money maker for him. I feel he wanted me to go away and the way he did that was to ignore my statements of increasing pain and debilitation.

Man, does that sound familiar! I practically demanded my PCP send me to a pain management Dr for stellate ganglion blocks and pain control, as he was doing nothing for my pain. Once there the staff of the adjoining pain clinic swooped down on me to sign me up for their multi-disciplinary program, and I decided to give it a serious try, hoping to avoid surgery.

The Dr affiliated with the pain clinic was not a pain management/anesthesiologist though, but a neurologist who specilized in migraine treatment. And he was VERY against opiod treatment for chronic pain, regardless of dx. After months of severe pain, and completion of the program with no improvement, but increased pain due to winter cold, I broke down and asked for stronger meds. At that point I had only been on Ultracet, which was less effective than extra-strength Tylenol, plus Zanaflex, Elavil, and Neurontin, until a reaction to that med took it out of my bag of tricks.

So in Dec of 2003, 10 months after injury, with 24/7 pain averaging from 5-8, he rx'd ONE daily dose of oxycontin 10 mg. That's it. I was still attempting to teach preschool (part-time), would take it with my a.m. meds, go to work, come home and by mid-afternoon wd be in agony again. When I asked if I might have a p.m. dose as well, hubby and I had to face a team of Drs and staff and listen to a lecture on addiction and dh was told to dispense my meds!! Over 20 mg Oxycontin a day, and mind you, I was dx'd with TOS and RSD already at the time!

I had surgery in Feb 2004, and when I returned for PT this Dr was still managing my meds. He was appalled Dr Annest had me on 40 mg. Oxy post-op (20 mg 2x day), and completely disregarded Dr. A's recommendations that I be left at that dose for 2 months, but made immediate plans to start titrating me down. He then had me sign a pain contract, which I had NO problem with, and talked about replacing the Oxycontin with a different med once I was below a certain dose. When I neared that dose I asked when I would be starting the new med, and he told me he'd decided I should take a "drug holiday" first. Just exactly what a TOS/RSD patient needs, right? This was approx. 6 months from my first rx for Oxycontin!! That was the last straw for me - I found another pain management Dr and never went back.

BTW, I have always used the same pharmacy for my meds, never misplaced a prescription or needed more before my rx should have run out, or given any other indication of addiction or abuse. This Dr should NOT be in charge of a program for chronic pain patients, IMO!!

beth

[johannakat]

Dawn-

I also wanted to add that my pain doc has always been very supportive when I tell him what I need to be comfortable. I think if you are expressing honestly your feelings, then if you have a good doctor they will listen to you and help address your concerns. I mean this with regards to meds and also whole life suggestions. My doctor has been super supportive with encouraging guided relaxation, appropriate exercise/diet, and proper treatment for my TOS as well as the meds I am on.

I also wanted to say, that when I see my pain doc, i fill out a questionaire that is designed to help me describe my pain levels and how the pain is affecting my life. I fill one out at every appointment. There must be 20+ questions, they are specific, and based on something i read, I believe designed to "help" me (and any other patient) describe the effect pain is having on all parts of my life without really having to think too hard about how to describe it in just the right way.

some are questions about what are my pain levels, then how does pain interfere with day to day activities, work, play, mood, focus, relationships with other people, enjoyment of my life, etc. It gives me a chance to say (without really having to think hard about how to communicate it) how pain affects all aspects of my life and at the end it specifically asks what percent of my pain is being relieved by the medications I am on.

I assumed that all pain docs did a similar things, and that your answers on that type of quesitonaire would make it obvious when an adjustment was needed.

Obviously I say all of this knowing that we as a group have honest needs...

So with that assumption, if pain is interfereing significantly in any of those aspects of your life, a good pain mgmt doc should be willing to work with you to try to fix it.



best of luck to you,
Johanna