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?
Jennelle:confused:

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

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

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

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 :hug:

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

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
ASB

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

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!

:hug:
Dew

drs
 

good point!!!
Jennelle

I was also told this in the past. What I have found since I have seen a few pain docs who deal with rsd is they all have their approach. Some believe in more meds and some just believe in certain procedures. A lot will only do what they do for treatment and not change that view for anything or work with a person. I think with this everyone reacts different. I have not had the best luck with meds though am trying some new ones now. I do get to the point though in pain that even if a pain med took a little edge off it gets me through so to speak cause sometimes the pain becomes too much. What did your doctor suggest then for your next step in treatment?

next step
 

Then next step is to try cymbalta and he upped my morphine to 3x a day. He also told me that eventually i will have to stop taking it and that I won't like that. He is all about the pain clinic they want me in now...I just don't know if they will do anything different then I have had before. You know my reasons for not wanting to go....I just can't right now. I took the cymbalta and I feel so sleepy and foggy...the morphine doesn't even do that to me. I have tried Lyrica, amitriptiline, dephedapine, all bad side effects. He seems to think the best thing would be one of the antidepressants that are also used for nerve pain.
Jennelle

Hi Jenelle,
 

I saw a PM Dr. years ago that wanted me to go to a pain program. It was for a month and I would have had to drive 35 miles each way plus be their for 8 hours each day. There was no way I could have done it then and I couldn't do it today. It turns out the PM Dr. owned the Pain treatment clinic.

I am sorry to hear they are trying to make you go through that.

I think there is a law that you have to be treated for cronic pain in a way that will help get a person comfortable with pain.

I also got an email last week that there is another law that is up at Washington now being worked on for cronic pain.

We have to be our own advocate with this and getting the help we need. I was watching The Doctors today and they said you have to act like a CEO of your medical care.

I do hope you get the help you need to get better.

Ada

I too just went back on Cymbalta. I tried many other meds for this with no relief and was on Cymbalta for 6 months but too low of a dose and now we are working up to 120 along with a few other new meds to try. It does not make me sleepy but as I told you nothing does but I know when I was increasing before and now I feel icky like nausea but it did get better once my body adjusted. Have you tried taking it at night with dinner? I am not sure what dose you are on but when I started they told me to take it then.

The most important thing in RSD is that you keep mobile to some extent. Decreasing the pain to such an extent that you are able to do that and keep some of that mobility is key IMMHO. At least you are not making it worse by just laying there in pain that's too high to move a muscle.

Yep! They Re going to start counting my boyfriends pills, so when we filled the prescription today, I had the pharmacist count the pills in front of us to make sure we he started with the correct amount.

probably a dumb question..but what is bio feedback?:confused: