Re: Who's (who is) on what for pain

[Guest guest]

First, let me apologize for being a grammar nazi.

I just can't help it.

Second: I've had this disease for over 45 years.

My stomach is shot.

I use darvocet daily, and

percocet when

I'm really hurt and fatigued.

I use marijuana when I just can't

dump any more chemicals on my stomach.

I suffer spontaneous waves of nausea so back

my knees buckle. For no reason, just out of the blue.

I can be anywhere, doing anything or nothing

and the nausea comes on like a freight train.

Also, I have lost my appetite.

Nothing but a cold glass of milk

sounds or tastes good.

I suppose that might be a good thing

but I need to eat to take the meds

and keep up my strength.

Also, the marijuana gives me

energy and motivation to do

the things I need to do around

the house and garden.

Good Luck,

Shauna

[Guest guest]

i wanted to find out if anybody else uses marijuana for pain or

nausea. i take percocet, ultram ,lyrica, tramadol, baclofen,

ambien,and lortabs occasionally. i am on sulfazine and methotrexate,

and prilosec to try and protect my stomach somewhat. i have had these

diseases for two plus years now and 45 years sounds crazy to me. how

old were you when you were diagnosed?

>

> First, let me apologize for being a grammar nazi.

> I just can't help it.

>

> Second: I've had this disease for over 45 years.

> My stomach is shot.

>

> I use darvocet daily, and

> percocet when

> I'm really hurt and fatigued.

>

> I use marijuana when I just can't

> dump any more chemicals on my stomach.

>

> I suffer spontaneous waves of nausea so back

> my knees buckle. For no reason, just out of the blue.

> I can be anywhere, doing anything or nothing

> and the nausea comes on like a freight train.

>

> Also, I have lost my appetite.

> Nothing but a cold glass of milk

> sounds or tastes good.

>

> I suppose that might be a good thing

> but I need to eat to take the meds

> and keep up my strength.

>

> Also, the marijuana gives me

> energy and motivation to do

> the things I need to do around

> the house and garden.

>

> Good Luck,

> Shauna

>

[Guest guest]

> >

> > First, let me apologize for being a grammar nazi.

> > I just can't help it.

> >

> > Second: I've had this disease for over 45 years.

> > My stomach is shot.

> >

> > I use darvocet daily, and

> > percocet when

> > I'm really hurt and fatigued.

> >

> > I use marijuana when I just can't

> > dump any more chemicals on my stomach.

> >

> > I suffer spontaneous waves of nausea so back

> > my knees buckle. For no reason, just out of the blue.

> > I can be anywhere, doing anything or nothing

> > and the nausea comes on like a freight train.

> >

> > Also, I have lost my appetite.

> > Nothing but a cold glass of milk

> > sounds or tastes good.

> >

> > I suppose that might be a good thing

> > but I need to eat to take the meds

> > and keep up my strength.

> >

> > Also, the marijuana gives me

> > energy and motivation to do

> > the things I need to do around

> > the house and garden.

> >

> > Good Luck,

> > Shauna

> >

shauna

I smoke marijuana when i was a young woman. i quit it due to

societies out look on it years ago. I like marijuana and didn't want

to quit. If it helps you that is wonderful, cause I have a lot of

pain. But i can't smoke it , It is illigal here in USA.

Clora

>

[Guest guest]

I was officially diagnosed at the age of 17, but the symptoms started

when I was nine.

Honestly, after a while you just get used to it. It's a

different " lifestyle " so to speak. And a very challenging one at that.

The best advice I can give anyone is:

1. Eventually the chronic pain will deplete the natural chemicals in

your brain and most will need an antidepressant. GO FOR IT!

2. Activity REST Activity REST Activity REST

Take naps or just lie down and rest every day and don't feel guilty

about it. YOU ARE ENTITLED.

3. Do what ever you need to do to live a semi-normal pain free life.

If marijuana works for you, go for it. The medical community is all

for it. It is only our congress (con being the opposite of PROgress)

that opposses.

I think the following letter might help those whose families and

friends just don't understand.

Dear Distric Manager:

Thank you for taking the time to speak with me, I appreciate your extra

time and attention

But on a personal note I am compelled to share with you something that

has bothered me since I met you.

It is your statements that because you have a sister-in-law that has RA

you feel you are " intimate " with this disease. Furthermore, I find it

inappropriate for you to make a distinction between challenge and

disability in regard to RA.

I know you mean well, but believe me, when someone who does not have RA

says they have an intimate understanding of the disease because someone

they know has it, it comes across as presumptuous, even arrogant and

condescending.

Until someone has spent years trapped in a body that is hell bent on

destroying itself in the most painful and humiliating way possible, you

simply cannot understand. There is no intimacy.

You can empathize, you can sympathize, be supportive. Accommodate and

encourage but you will never know and understand with intimacy the

debilitating effects of this disease. The unimaginable pain, pain that

is so unbelievable as to be madness in and of itself.

You can't possibly understand what this disease and it's never ending

pain and destruction to one's body does to one's spirit. To be given a

pill at 17 years of age and told, oh by the way this will probably make

your hair fall out....To wake up some days in so much pain as to be

immobile. Unable to walk to the bathroom to relieve yourself.

To be told you can't have a child at this point in time because even if

a pregnancy were to come to full term the birth defects will be

devastating because the RA meds you are taking at that time are

mutagenic.

To watch your fingers hands and arms and wrists and knees and hips and

ankles and neck and feet and elbows and skin disintegrate, twist and

become deformed. To be unable to dress yourself, to feed yourself, to

be unable to attend to your own toilet. When the disease flares to a

point you can't stand on your own feet or hold anything in your own

hand because your fingers have swollen to the size of bratwursts and

are now immobile.

When you have had to undergo more than a dozen surgeries to repair

destroyed parts of your body. Then to add insult to injury, you are

covered with hideous scars and must endure return trips to hospital

because of life threatening DVTs that have formed following surgery.

To find yourself sitting on the kitchen floor crying with frustration

because you can't open a simple carton of milk or any number of

containers or bottles or jars or buttons or zippers or jewelry clasps.

Or to not be able to wear the heirloom rings passed down to you because

your fingers are swollen and twisted. Or not to be able to tear open a

simple paper sugar packet because the pain and swelling in your hands

just won't let you go there.

And that's just the physical aspects of the disease. Only those who

live the life understand the emotional devastation. The impact of the

moment when it really sinks in this is for EVER. There is no cure.

That this is your life, period. It won't get " better. " What you have

to look forward to is only more pain and destruction. This is the

aspect of the disease that leads to depression and feelings of

isolation and hopelessness.

Or the humiliation you experience when you see the look on a man's face

when he finally " sees " the disease and you know he won't be calling you

the next day.

Even if a miracle cure were devised today, the destruction has already

been rendered and the destruction is painful. Those of us whose bodies

have been relentlessly attacked would still need pain management

protocols and would still be disabled in many areas of our lives

because the damage has already been done and much of that damage cannot

be repaired no matter how many prosthetics technology comes up with.

Personally, I find it inappropriate for you to make a distinction

between challenge and disability when you do not live the life. Yes, I

agree with you it is a challenge.

But when you can no longer: run, climb, ride a horse, ride a roller

coaster, ski, roller-skate, jog, play basketball, volleyball, tennis,

racquetball, baseball, softball, field hockey, sky dive, spillunk,

repel, ride a bicycle, bowl, do weight training or gymnastics or yoga

or martial arts or any sort of self defense, kayak, canoe, backpack,

embroider, quilt, take a bath in a bathtub without someone helping you

in and out of the tub or to safely stand in the shower or even

sleep....and on and on and on....

My stars, even I don't fully " know " or am fully " intimate " with the

limitations, challenges and disabilities of this disease.....the point

I'm trying to make here, is if one is unable to participate in any

physical endeavor they choose because they are not physically able that

is disability.

When participation is not an option, it is a disability. When you send

out your resume, get immediate calls for interviews and then you see

the subtle look on the face of the interviewer when they see your

deformed fingers and hands and suddenly the in depth interview comes to

a screeching halt and of course you NEVER get a call back...thus

denying you employment....that is not a challenge...that is a

disability.

When one cannot work a full time job that is a challenge. When one

cannot work a full time job that would provide them with the economic

and medical benefits that they need that is a disability.

Because I can't work a full time job I would be economically

discriminated against as a part time worker in terms of financial

compensation, i.e., pay rate and health benefits.

I find it appalling that those who need health benefits the most are

the ones that are denied it most often. And now that Congress and the

health insurance lobbyists have stepped in, people like me who need

their meds the most can no longer afford them because the big gun RA

meds are Tier 4 meds (catastrophic coverage).

What is that doing to my body? Nothing compared to the emotional

stress that it is inflicting. The emotional stress of trying to find a

philanthropic organization that will help me with the cost of the

medicine I need.

The emotional stress of filling out the endless, bureaucratic red tape

in triplicate must be notarized then delivered to the rheumatologist

who then must dictate the required letters and then sign and fax the

paperwork that the philanthropic organizations need.

The stress of waiting and waiting and waiting for help with the cost of

the medicine I need and praying I don't have a break through flare in

the interim. And those that do know and, are intimate with RA know

that emotional stress is one of the most surefire and destructive

triggers of a break through flare.

I could go on and on with the intimate facts of this disease. Watching

my skin turn to crepe paper. Knowing the disease is systemic and is

destroying my heart and lungs and cardiovascular system as well as my

bones and sinew.

Knowing that the very meds that keep the disease in check are

destroying my liver. And knowing that if my liver were to fail I would

not be a candidate for a transplant b/c of the preexistence of the RA

and the required meds that destroyed the first liver....Catch 22.

Knowing I'm not going to live to be an old lady. That is something I

have come to terms with and I'm okay with. But what I haven't come to

terms with is the look on my daughter's face when she realized I wasn't

going to live to be an " old lady. " That is the most devastating

intimacy of all.

I know you mean well, and I appreciate your attempts at empathy, but

until you live the life you can never know the many intimate

devastations of it. So please, don't say to me that because you know

someone who has RA you are intimate with it, that you " know " ... " Believe

me, my sister-in-law has it and I am intimate with it, I know..... "

because, honestly, with all due respect, you don't.

Thanks for letting me share this with you.

Shauna

>

> > i wanted to find out if anybody else uses marijuana for pain or

> > nausea. i take percocet, ultram ,lyrica, tramadol, baclofen,

> > ambien,and lortabs occasionally. i am on sulfazine and methotrexate,

> > and prilosec to try and protect my stomach somewhat. i have had

these

> > diseases for two plus years now and 45 years sounds crazy to me. how

> > old were you when you were diagnosed?--- In RA-

[Guest guest]

**BRAVO** and very well said, Shauna. So many people just don't get

it. So many hear " arthritis " and think only aches and pains. They

haven't got a clue. I admire your spunk and your total honesty and

your willingness to bare your soul so that others can understand and

even relate to what you go through. You are an inspiration.

I have RA and FMS. Its tough to know which one is flaring when - it

seems to go back and forth or else is just never ending - I don't

know - I hurt all the time. I don't have health insurance and I've

seen the looks from potential employers who never call me back,

either. I am over two years in the waiting for Social Security

Disability. I take Neurontin, Sulphasalazine, Methotrexate, Folic

Acid, Skelaxin and Percocet. I also take Celexa and Xanax for the

depression and anxiety, Dyazide for high blood pressure and Levoxyl

for an underactive thyroid. I am hoping to take part in a clinical

study as that is the only way I could possibly afford any other

medicine that " might " help me. Even with a discout card, I still

have to pay almost $400 per month in prescriptions alone. That

doesn't even begin to count the doctors appointments and bloodwork

that has to be done, too.

Anyway, I didn't mean to turn this into a whinefest about me. Thank

you for sharing, Shauna. I really appreciate it.....Doreen

[Guest guest]

I say go ahead and use marijuana I know someone uses for back pain and

nausea and other problems and it works wonders. It can help it will

probably be a cleaner expedience(also get higher faster) to use a

bubbler where you put water in a special place and the load the weed

into the bowl like container. Also pipes are good also. rolling into a

joint takes a lot of weed to do that with and you can get different

pipes with different sizes of how much you can put in there.

> >

> > First, let me apologize for being a grammar nazi.

> > I just can't help it.

> >

> > Second:� I've had this disease for over 45 years.

> > My stomach is shot.

> >

> > I use darvocet daily, and

> > percocet when

> > I'm really hurt and fatigued.

> >

> > I use marijuana when I just can't

> > dump any more chemicals on my stomach.

> >

> > I suffer spontaneous waves of nausea so back

> > my knees buckle. For no reason, just out of the blue.

> > I can be anywhere, doing anything or nothing

> > and the nausea comes on like a freight train.

> >

> > Also, I have lost my appetite.

> > Nothing but a cold glass of milk

> > sounds or tastes good.

> >

> > I suppose that might be a good thing

> > but I need to eat to take the meds

> > and keep up my strength.

> >

> > Also, the marijuana gives me

> > energy and motivation to do

> > the things I need to do around

> > the house and garden.

> >

> > Good Luck,

> > Shauna

> >

>

>

>

> ------------------------------------

>

>

[Guest guest]

I take Celebrex, Neurotin, plaquenil, chlord/clidi, darvecet and Hyzaar for high

blood pressure....I think I need something for anxiety, not sure, I go back to

my RA doc this Tuesday...so far the last week, I have spent 3 days in bed, so we

are still working on the right plan....having major stomach issues right now as

well....just now coming out of denial and realizing life as I had known is

over...sad..but looking forward to a change, to slowing down and actually

smelling the roses..wishing all a pain free day...

[Guest guest]

Well, I take plaquinel, sulfasalazine and diclofenic for RA, lyrica for

fibro. As far as a straight up pain medication, I take vicoden. I have

been on stronger pain medications (durgesic, percocet & MS Contin) in

the past too, not all at the same time. Granted, I was living in LA and

working for a pain management clinic at the time. Now that I am living

in Colorado...the docs here are not big on prescribing narcotics for

anything; I just have a great PCP.

I wish I didn't have to rely on pain meds. There are days where I

don't have to take any and others where I take 3-4. When it gets to

the point to where I need vicoden constantly...I want to see what I can

do to get back on something like MS Contin or say the hell w/ it all

and get pain pump. I know my old doc in LA would be willing to do it

for me. One of my friends who has lupus and fibro relys on heavily on

marijuana for her pain. Everyone is different.

--- In , <kmitch1966@...>

wrote:

>

> I take Celebrex, Neurotin, plaquenil, chlord/clidi, darvecet and

Hyzaar for high blood pressure....I think I need something for anxiety,

not sure, I go back to my RA doc this Tuesday...so far the last week, I

have spent 3 days in bed, so we are still working on the right

plan....having major stomach issues right now as well....just now

coming out of denial and realizing life as I had known is

over...sad..but looking forward to a change, to slowing down and

actually smelling the roses..wishing all a pain free day...

>

[Guest guest]

It helps, I mean I am not exactly pain free...but it helps me

function. I am suprised your rheumy lets you take excedrin...mine

doesn't want me to take anything other then tylenol because it's too

much NSAIDS. I should be getting on remicaide by the end of the

month along w/ mtx. I hope it helps like it did years ago.

> >

> > I take Celebrex, Neurotin, plaquenil, chlord/clidi, darvecet and

> Hyzaar for high blood pressure.... I think I need something for

anxiety,

> not sure, I go back to my RA doc this Tuesday...so far the last

week, I

> have spent 3 days in bed, so we are still working on the right

> plan....having major stomach issues right now as well....just now

> coming out of denial and realizing life as I had known is

> over...sad.. but looking forward to a change, to slowing down and

> actually smelling the roses..wishing all a pain free day...

> >

>

>

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>

>

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>

>

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>

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>

>

>

[Guest guest]

I'm a little behind, so if someone's already said this, please forgive

me. If marijuana is going to be used on a regular basis for pain

relief, I would strongly suggest cooking with it instead of smoking

it. It is much less harmful this way. All you have to do is put the

leaves in some butter on the stove on a low temperature and allow the

butter to melt. The THC in the marijuana will be absorbed into the

fat in the butter (you only have to cook for about 30 minutes). Then

you can either leave the leaves in or strain them out. Then use it

just like butter. Bake it into a cake, cookies, brownies, make

cinnamon toast, whatever. Just my opinion of a better way to ingest,

since smoking anything can increase inflammation due to the bad

chemicals.

Cherie

>

> I say go ahead and use marijuana I know someone uses for back pain

and

> nausea and other problems and it works wonders. It can help it will

> probably be a cleaner expedience(also get higher faster) to use a

> bubbler where you put water in a special place and the load the weed

> into the bowl like container. Also pipes are good also. rolling into

a

> joint takes a lot of weed to do that with and you can get different

> pipes with different sizes of how much you can put in there.

>

[Guest guest]

I take vicodin for pain. Some days I am able to get by on one dose

in the morning but other days I need to take it later in the day as

well. I'm not pain free with the vicodin, but am able to function

better. I remember waking up one or two mornings about a week ago

and I wasn't in pain! I got up and was like. " WOOO WHOOOO!! " I'm 37

years old and have 3 small kids. I've only been diagnosed since late

March and am on MTX and Plaquenil.

~Jodie

> >

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> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello,

I do not post much because my hands are swollen a lot, but i  do read a lot of

posts and i am on 70 mg. of methadone a day, it does mask the pain but does not

take it away. I have tried many different things for pain. I do not have an

immune system because i was born fighting;  allergic to everything ,my mother

had to boil my cloths and i could have no dairy products, by the time i was 6 i

had scarlet fever, a fever of 105 and climbing bascially my brain was boiling,

they sent me home to die i layed on the couch for three months and could not

bath or get wet due to pnemonia i finally came out of it with some memory loss

and some learning problems, and then i had viral meningitis, at the age of 26

again a high fever of 104.  When i lived in Seattle (where it is very wet and

humid) i was getting pnueomonia about every four months, when i moved to a drier

climate i have only had it once in two years Then i got Lupus and so on. I

cannot take

Prednisone or anything like that. i got real sick from Prednisone. Then the

doctor says for some reason that Prozac would take away about 10 percent of my

pain and make me happier, i was suicidal on that. So saboxon (bupinorphine)

morphine or methadone is the only ones that work. I was taking bupinorphine, and

when i was in Seattle i didn't have to pay for it, when i moved to

central/eastern washington it would have costed me about 500 a month. So now my

medicare pays for the methadone. It seems to work for the most part, except the

weight gain, it slows down the metabolism quite a bit. So that's it for me

besides 800 mg ibuprofin.Doctor says without it i would be in a wheelchair. So i

tried to prove him wrong and got off for a minute, i lasted about two weeks then

i could not move it was like i just froze over night. But now some days are

better than others and i thank my higher power that i can live partly normal and

have fun with my kids and family.

 

Blessings,

Kris

[Guest guest]

Vaporizing is also a good way to avoid the smoke. There are special

pieces of equipment for " vaporizing " herbs (including marijuana).

Basically you're getting just the aromatic oils without burning it.

> >

> > I say go ahead and use marijuana I know someone uses for back

pain

> and

> > nausea and other problems and it works wonders. It can help it

will

> > probably be a cleaner expedience(also get higher faster) to use a

> > bubbler where you put water in a special place and the load the

weed

> > into the bowl like container. Also pipes are good also. rolling

into

> a

> > joint takes a lot of weed to do that with and you can get

different

> > pipes with different sizes of how much you can put in there.

> >

>

[Guest guest]

Good point, Cherie! I'm not to the marijuana point yet as its still

illegal in Florida, but considering I've been smoke-free for over two

years, I wouldn't want to smoke anything anyway. Your idea is a good

one. I thought I was going to have to make a bunch of brownies - then

my weight would have really escalated

--- In , " chrbcktt " <penguinpanties@...>

wrote:

> I'm a little behind, so if someone's already said this, please

forgive

> me. If marijuana is going to be used on a regular basis for pain

> relief, I would strongly suggest cooking with it instead of smoking

> it. It is much less harmful this way. All you have to do is put

the

> leaves in some butter on the stove on a low temperature and allow

the

> butter to melt. The THC in the marijuana will be absorbed into the

> fat in the butter (you only have to cook for about 30 minutes).

Then

> you can either leave the leaves in or strain them out. Then use it

> just like butter. Bake it into a cake, cookies, brownies, make

> cinnamon toast, whatever. Just my opinion of a better way to

ingest,

> since smoking anything can increase inflammation due to the bad

> chemicals.

>

> Cherie

[Guest guest]

I've been on a variety of stuff, but little to none of it has worked.

I get a BIG cortisone shot every 3-6 months. That keeps my

inflammation in check, which helps with my pain.

I was on IB800s for a long time, but it burned up my stomach. I'm off

all NSAIDs right now, for that reason. I have a scrip for Vicodin, did

nothing but give me nightmares. Then they switched me to Ultram

(Tramadol), which was somewhat effective, but only for 4-6 hours- I was

waking up in the middle of the night in pain and taking another pill.

It can also make you very sleepy, depending on your level of experience

with narcotics. Right now I have cyclobenzaprine, which I take at

bedtime as it knocks me out cold. But, I sleep through my nighttime

pain, and at least I wake up in the morning feeling slightly rested.

During the day, I'm trying to pretend I don't feel it.