Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-14-2009, 04:44 PM #1
Jennelle Jennelle is offline
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Default The best meds

My pain doctor said that he wouldn't up my dose after today. He said that narcotics don't work for flair-ups....is this true for all of you? He said that narcotics don't really work for this kind of pain and that the only thing that will end up helping me now (denied on sympathectomy and SCS) is going to be bio-feedback and such. What do you all think?
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Old 04-14-2009, 05:44 PM #2
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Why do these docs continue to believe pain meds don't help?? Grrrrrr If they didn't work then why the heck do so many of us get some relief from them????? Funny how they don't work. HA!! Flares are different for everyone and having a breakthrough meds helps a lot of people. When a flare happens it's like you need a little extra kick so to speak to keep up with the pain. I think it's just an excuse they have handy for whatever reason. It's pure bs in my opinion.

I know that bio-feedback, meditation and things like that can help some but it's not going to keep your pain under control and it won't help much when you're in a flare and can't think straight! Sympathectomies and SCS are the things you should never, ever do with rsd. Both cause spread and more pain. I'm glad they were denied cause I'd hate to see you end up "worse off" because of the misguided notions of docs who still don't know a dang thing about rsd. *sigh*

Those are my 2 cents for what it's worth. LOL

Hugs,

Karen
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Old 04-14-2009, 06:02 PM #3
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I hope that I don't someday regret writing this.

But, here's my guess.
And, It's ONLY for those of you who have a solid relationship with your neuro, or pain management psychiatrist. (Whomever is doing your prescribing, which, should be 1 person) naturally.

For instance,
Mr Bluffit has RSD / TOS and some discs, that all act up you know, some days are worse than others.
The doctor has him on a "cocktail", and one opiod, let's say Methadone, is used for pain relief.
Mr Bluffit is given 30 mg. / day. 10 mg each.
One morning, One afternoon, One evening/bedtime. "As required".

On a good day, what Mr Bluffit must do, is to take half a pill when possible. Or, skip one.
This allows him to build up a very small "stock" for "Breakthrough" pain.

I don't know the name for this, but, it has been told to me, by my own doctor's office, that I'm responsible for "saving for that rainy day", as they cannot prescribe for it.

Couldn't make more sense to me!

Some days I may be just "lazing" around. Naturally, I take less of the pain med!
We're Not machines, or cars, that must have our "tanks filled".
We can cut back when we're able, and have that half a pill or so, to use on a bad day, after we exerted ourselves, or the weather is bad, or, on and on.

I hope this might help.

pete
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Old 04-14-2009, 07:53 PM #4
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Quote:
Originally Posted by Jennelle View Post
My pain doctor said that he wouldn't up my dose after today. He said that narcotics don't work for flair-ups....is this true for all of you? He said that narcotics don't really work for this kind of pain and that the only thing that will end up helping me now (denied on sympathectomy and SCS) is going to be bio-feedback and such. What do you all think?
Jennelle
Hi Jennelle,
Narcotics do work for flair ups or breakthrough pain. They need to be different than what you take everyday for pain. I take an extended release form of morphine twice a dayy, but I have immediate release morphine for flairs/breakthrough. It does work.
As for SCS...I have 2 one for my arm, one for my leg. They both work great and have NOT caused my RSD to travel. My docs definitely have a clue about RSD and treatments. SCS may not be the answer for everyone.
My psychologist and I work on biofeedback and guided imagery every week. This does help but not on its own for me. It is worth trying if it helps you get any relief at all.
Hope some of this helps you,
Chris
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Jennelle (04-15-2009)
Old 04-14-2009, 10:43 PM #5
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there are alot of drs that do believe this. period and wont or refuse to change their minds.

the only time that i take different pain meds is when there is a horrible flare. and the only other thing that i can take is percoset . which does make me sick and have to meds not to be puking my guts up. but other than that. i try not to take alot of pain meds besides my pump. but there are alot of times that im in just pure Hell and then it starts to barrel out of control for me and then there goes my mobilites and all.

i do like other say guided imaigry and things like that bio feedback hasnt worked for me maybe im just a crazy LOL

i also try to do things like applying heat and takes baths when i can with epson salts or just sitting in the dark and trying to concentrate on pushing the pain away. this isnt for everyone and it has taken me years to be able to do this

i hope that you get some reliefe soon

carrie
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Old 04-14-2009, 10:47 PM #6
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Quote:
Originally Posted by AintSoBad View Post
I hope that I don't someday regret writing this.

But, here's my guess.
And, It's ONLY for those of you who have a solid relationship with your neuro, or pain management psychiatrist. (Whomever is doing your prescribing, which, should be 1 person) naturally.

For instance,
Mr Bluffit has RSD / TOS and some discs, that all act up you know, some days are worse than others.
The doctor has him on a "cocktail", and one opiod, let's say Methadone, is used for pain relief.
Mr Bluffit is given 30 mg. / day. 10 mg each.
One morning, One afternoon, One evening/bedtime. "As required".

On a good day, what Mr Bluffit must do, is to take half a pill when possible. Or, skip one.
This allows him to build up a very small "stock" for "Breakthrough" pain.

I don't know the name for this, but, it has been told to me, by my own doctor's office, that I'm responsible for "saving for that rainy day", as they cannot prescribe for it.

Couldn't make more sense to me!

Some days I may be just "lazing" around. Naturally, I take less of the pain med!
We're Not machines, or cars, that must have our "tanks filled".
We can cut back when we're able, and have that half a pill or so, to use on a bad day, after we exerted ourselves, or the weather is bad, or, on and on.

I hope this might help.

pete
asb
That is a good idea but my drs count my meds and since it is a work claim I have to have a contract and they do pee tests to see what my levels are and know if I took more one day or not. I actually tried that with the methadone and had one left and took it yesterday...now I am freaked that they will know and I will be in big trouble! What do I do about that? I don't even know how long it takes for any of the meds to leave my system and he said he can call me for "random" drug screening -granted I NEVER have given them any reason to do this it is only because it is a workers comp claim that they do this. It just sucks!
Thank you so much for your response! If you have any idea about the pee length of time let me know guys. I would love to be able to have one for a "rainy day". Yesterday was especially bad.
Jennelle
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Old 04-14-2009, 11:21 PM #7
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Jenelle,
Best thing is Honesty.
Be straight up with your doctor.
You might print out one or two notes from this thread.
If you doctor is any good, he KNOWS that RSD, is worse some days than others.
So, simply ask him/her, would they like to prescribe an extra pill or more for "breakthrough" pain during the month, or How do They Suggest Working It?
The Question, I think is best.
Just because my doc did one thing, doesn't make all the others comfortable with that.
And, I personally don't see any reason to use any different medication for breakthrough pain, if you're using a usual enough level of the first. (Was I clear on that?)
In other words, all you might need, is another pill of your regular pain control med.
PM me, if you feel you must.

Then to do that, say you're prescribed 90/month.
So, You get Breakthrough pain once/twice a week.
Should he prescribe an extra one/two per week? (That's the Question!)

Or, should you build up, a bit, to get by?

My doc, was kind enough, since I went from 12.5 mg of my pain med, then after the 2nd accident straight to 100mg. (remember, that I was started at 60mg. and worked myself down to the 12.5), So, now I get 60 mg/day.
I might not take all that.
I might be able to take a half of a pill, some of the time. Suffer a little... Yes?
And, that's just what I think my doc is comfy with.
I could take them all!
Easily!
Why feel ANY PAIN?

Well, I could give you several reasons!
But, it's better, imho, to take the least of meds possible, in concordance with your doctor!
And, You'd better make dam sure well, that you've got a smart one!

I wish I could say more than this.

Ya'll be well.
I REALLY need to get some sleep.....


peace on all,

Pete
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Old 04-15-2009, 09:50 AM #8
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Default Hi Jenelle,

I agree with Pete on this. I would be honest with your Dr. and tell him that sometimes you have to take extra meds and other times you can get around taking a little less.

It's too bad a lot of these Drs. don't get it. They should have to live with what we go through for one day.

I believe too that some Drs. are afraid of the laws that seem to keep hounding them about narcotics. I was just watching Fox yesterday and 39 states have passed laws that they have to keep up with what prescriptions they give out. A lot of people are going to Florida and changing amounts on their prescriptions and writing fake ones and they also said more people are dying today from prescription drugs then illegal ones.

I have Methadone here and I take it only in a flare anymore. I was able to go off of mine months ago and I do keep my Dr. up on what I do with them though.

I can't believe how strict they are with you. It makes me wonder if this Dr. hs dealt with other patients that did wrong and he takes it out on other patients or maybe he has been reprimended before by the ADA or some other overseers.

I signed a contract but it's not written in stone that I take mine the way we agreed on in the contract.

Narcotics do work for pain, he should read on this forum and see the percentage of people that are on them for pain.

I do hope you start feeling better soon.

Ada
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Old 04-15-2009, 10:48 PM #9
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I thought there was a law concerning pain being properly addressed...Bill of Rights for patients concerning pain management.

Sorry your doc is being stubborn. We GO to PM's to get the meds we need for relief; then, they want biofeedback to be your pain med! UNREAL!


Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 04-15-2009, 11:05 PM #10
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Quote:
Originally Posted by Dew58 View Post
I thought there was a law concerning pain being properly addressed...Bill of Rights for patients concerning pain management.

Sorry your doc is being stubborn. We GO to PM's to get the meds we need for relief; then, they want biofeedback to be your pain med! UNREAL!


Dew
good point!!!
Jennelle
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