To steve in Pa

[Guest guest]

Steve, I just had my appointment with pain management. I was telling them about

your problem getting help with your level of pain. The doctor suggested (not

knowing your case) that you may be over medicated. She said that when someone

is taking high high doses of pain medication, the body quickly adopts to that

level. In a shorter time the dose with become ineffective.

She was saying that that is sometimes a problem with PCP prescribing pain

medicine. She also thought that some of the problem you are having getting

anyone to take your case is the concern that since you are such a high dose of

medications and still having pain given your age, there is the question of what

are they going to be able to do in the next year, 5 years, etc to manage the

pain.

Just something to think about. I hate to see you suffering so. Have you tried

any additional treatments to reduce the pain? have you checked into

biofeedback? It is not a cure itself, but can help manage the brain's attention

to pain signals.

It helps to retrain the brain to reduce the importance of sending pain signals

over all other stimuli. If your brain is trained to think that a certain level

of pain is ok, it will allow normal information to come into awareness. Thus

you are able to do other activities.

Let us know how you are making out. Gentle hugs, Tami

[Guest guest]

Tami,

Steve, if he were in a cancer clinic would not be asked that questions and they

rotate medications for tolerance but Steve is not taking high dose medication in

his break thru and the Actiq is immediate release as to get you out of the ten

pain level. Steve is on a pain pump also and pcm's don't insert, wiggle, or

like to deal with them as there is a specific protocol that is used in pain

pumps and only one doctor and nurse should give meds for these and Doctor

inserting them.

What you Doctor said is NOT TRUE, The High Dose as some doctors call them are

the low doses when you compare them to the manufacturers dosages but someone not

even doctors of patients on " high Meds " did all these new guidelines and

spreading them as nausea, that is why you deal with Doctors who deal with

intractable pain patients and can rotate their drug and works with a pharmacists

and looks at the PDR that gives instruction for tolerance. The point being if we

switch you to another medication, it might hold your pain better and then you

will be off the last one for a while and we might come back to it.Your Doctors

QUICKLY is so weird as it is not quick, I did not become tolerant on a

medication of seven years, That is the reason for titering medications up and

down slowly.

Steve for what he has, a brain gliamo, with other issues and going through

really intensive treatment that causes neurotic pain, never ever says that to a

cancer patient in pain and isn't it wonderful that this is what she would jump

to first off =high doses, too much, not effective, What if it is not enough ? as

Morphine and opioids do not have set limits. The PDR limit for Morphine is

1600mg

but Goodness the people who placed these best practices guidelines in are saying

and telling everyone 120mg a day should be the max. and the mgs that are

correlated over from the other opioids for samd amount.

So, I will just go up to Oregon and get my two bottles of barbiturates and do

myself in if this is going to be the answers doctor state. Shame on your Doctor,

she does not know my situation or Steve's and I would like you to bring her The

Survivor Guide for Intractable Pain Patients by Dr Forest Tennant and challenge

her to read it as Dr. Tennant does give higher does to complex patients but also

other program support . Now I have seen the people his Co Founder, My past pain

Doctor that put me on timed dose and read all my charts and certified me as an

intractable pain patient and told me I have to take care of myself and do not

act like I am normal I am not but I have to want to survive and tell people No ,

no more sticks etc.

So my prognosis is not good and I do not need outside doctors telling me I am on

too large dosages when they are sticking neurotoxins in your spine as many times

as they want but it is only supposed to be three by spine society protocol.

So, If the shoe fits wear it but don't start changing things that make me

sicker. Some Doctors need to research for high opioid treatment and its effect

(there are several thirty year studies on pain patients who haven taken opioids

that long)

Bennie