I am currently in a trial of sorts, and I do not have all of the information to give to fellow TOSers except this:

Do any of you have an immediate allergic response to alcohol, does having work on your teeth become a nightmare because you metabolize novocaine more than a usual patient, with any of our pain meds, do you get allergic symptoms?

Well, some of our meds need to use the liver and some of our meds avoid the liver altogether.

What is being studied is why are we pain drug resistant? Whether we have neuro TOS, or a broken leg, or teeth work, why do we need "more?"

The is the latest cutting edge pain mgt. research. I do not have more to add. But know that you are not crazy when you do need more, your body just has a rare syndrome that does not allow us the same result.

Once we have a major injury and are trying to get pain relief - long term pain - then our thyroid, adrenals, liver and other things happen that point to this syndrome.

If anyone is taking meds that avoid or go around the liver please list some - as I am not comfortable with my UR (work comp fights) right now to openly list mine, I am sorry.

This time above all other we work comp patients need a God who will protect us from the insurance co.s that want to rid themselves of "problem, costly" patients. Be careful. Tam

Does this ring a bell with any other patients here?

I am confused a bit. I understand part of this.

I definitely need less novacaine. Also, most med's I need less.

Alcohol, I need less. In fact, I rarely drink anymore as it wipes me out and puts me to sleep.

I hope others respond to the "around the liver" question about the meds. I don't really know which med's do that, and I'd like to know if there are better options out there!

Thanks Tam

Tam,

I don't need more, I do better on none.

I will start with sensitivities:
corn
gluten
NSAIDS
benedryl
most anti-depressants

Allergies
atropine (rash)
compazine (muscle spasms)
tetracycline (vomiting)
morphine (itch)
codeine (itch, panic attacks)
vicodin (itch)
lamictal (rash)

Allcohol makes me depressed, even in small quantities. Anti-depressants keep me awake, as do NSAIDS and benedryl like meds. Gluten gives me headaches. Corn and white flour give me heartburn.

There are some foods I avoid because of my gall bladder, especially tea.

I feel like it's possible I have not identified all of my allergies. I am pretty sure my all over stiffness is being exacerbated by something.

I get rashes when I take some meds.....PCN, Sulfa, etc

I don't find that alcohol or novocaine affect me more, if anything they affect me less. (affect or effect ? brain fog, can't think right now)

Ok, I was very tired when I posted, so I apologize.

The question is really that we need MORE pain medication than the usual patient.

The medical trial is "why do a few (rare) patients need so much MORE pain medication than others? Why, if they are having dental work, do they need so much more novacaine or multiple drug relief in order to get through the session?

So the questions they asked were:

Did or do you have weird reactions to alcohol? Yes, I vomit, usually by the second drink. I stopped drinking by 21 because alcohol made me so sick.

Other questions were about allergies in general -

does codeine cause anything to occur? Yes, leg rash, itching, fat lips, swollen eyes. Same for any sulfa meds, some antibiotics, etc.

The end result of this trial is that there is a rare group of people whose livers and metabolic systems do not intake certain substances like the majority of people do. Since they do not get enough to get pain relief (or any, because the body isn't using it right), they get tagged as drug seeking, or crazy.

But with this new knowledge, one, we're not drug seeking, and two, if we can find meds that avoid the liver / metabolism issue altogether, we may get better relief and healthier relief over the years we have to take these meds.

Two meds that avoid the liver would be Fentanyl and Dilaudid. This very allergic group must also use things like Milk Thistle (herb) to help the liver detox.

So this has nothing to do with neuro TOS.

This is just a rare disease that leaves a patient in pain with very few choices, much higher pain, and in a pretty hard spot since the majority of doctors don't know about the problem and don't believe the patient when they say "that doesn't stop the pain, it's still at an 8." Instead, they think we're making it up.

So we still have neuro TOS. RSD. Fibromyalgia. Disc disease. Or, a broken leg, or a tooth to cap! It's something on TOP of the presenting problem.

But I wondered IF there were more of these metabolic messes in TOS than the general populace.

In my case, Dr. Brantigan in Denver was adamant that I had an additional immunological or rheumatological disease process going on - and now I wonder if it wasn't this that he was identifying! And still "this" doesn't even have a name yet, this is cutting edge research. (I wish I had an article to post or lead you to!)

So for whatever it was worth, if to anyone, I just wanted to share this new info. as I do share all with you.

And lately, the ins. co. has been trying to whittle down my treatment, medication, even diagnoses, by constantly papering us with Utilization Reviews. (California. I do not know if other states have them.)

But we all must fight these URs because their goal is if they whittle you down to nothing they can then go into court and say, "see, he is perfectly normal and rehabilitated, there is no reason he's not working..." and they do it by bombarding you, your doctor and your attorney with URs that become too many for the doc to handle, or the attorney to have time to handle...so read up on TOSS and here and you are free to PM me with a question. It's getting really ugly with my case right now, and at a time that couldn't be worse considering my general health and those issues.

But, God bless as always, we must support one another, with love and broad understanding.

Tam

Maddy,
actually, you are answering in the opposite direction which I think is good. Good for you. But to answer your question, you want pain meds that avoid having to go through the liver. I was told Fentanyl patches (which I believe in, and you have to read the insert (very long) in full and follow it absolutely to a "t"), and also Dilaudid.

I'll try to find more.

Dear sweetie - you BLOW me away! I am in such high pain, as if I just got thrown out of a car and I am rolling down an asphalt drive, all bloodied and broken - and this is after 8 years! IF ONLY I could survive without having to fight constantly for these meds, and all of the harm they do me...

But God bless you and keep taking your blood tests and watching your liver and your blood sugar, ok?

Love, Tam

Ok Finz,

You're sounding more like the liver intolerant group like me. This would be a lifetime, born with it, type of disease.

You need to take blood tests and keep an eye on your liver enzymes. Use Milk Thistle. The only meds I know of are the Fentanyl (Mylan) patches and Dilaudid so far. I try to find more. And use pain creams that you believe help you. (Again, avoiding the liver.)

God bless you. Write soon.

There are four groups.
High metabolizer - body assimilates drug faster therefore needs more

Intermediate metabolizer - needs to drop the dosage down to 1/2 or more.

Slow metabolizer - Needs to drop down to 1/4 or more

Poor Metabolizer - needs to not take any or at pediatric doses.

If you want the name of the company who tests for this through DNA just PM me.

yes, i am very lucky and count my blessings that i can manage with just ice most of the time. i feel for you. what is laughable is that i have been called drug seeking, even though i throw away more meds than i take. when i broke my elbow i got a great shot (i think it was demerol) in the ER. i asked for the same when i broke my shoulder, but they sent me home with something about the strength of aspirin. i was mad.

anyway, my bloodwork last physical was fine except they found i had a urinary infection. what was interesting was that i could not feel that pain, i guess my normal pain level masks something like that.

sk8t, there are also those for whom the drugs have a different or opposite effect. for example, hyperactive kids prescribed tofranil calms them, but it would be like speed to a normal child. i suspect my metabolizing problem is more similar to the one the hyperactive kids have. for example NSAIDS are like coffee to me.