Re: Pain med vent

[Guest guest]

Dear Marietta,

I could have written your email about 7 years ago. My PA started in my jaw,

and everyone just thought I had a bad case of TMJ. Needless to say, the

pain was so bad at times I felt like lying down in traffic. It was

horrible, and I went from specialist to specialist trying injections, mild

narcotics, several rheumatologists, and finally my family doctor refused to

refill my prescription one time. This was after being his patient for over

10 years and taking both my children to him during that time. I felt like I

was betrayed and all alone. I was also dealing with Fibro at the time, and

all I heard was “You don’t want to get addicted to pain medication”. My

response was, “That’s a small price to pay if it controls the pain, but no

one seemed to hear me.

Finally, I got smart and went to see a pain specialist. I know they saved

my life. He started slow on the pain meds and slowly we increased them

until I was comfortable. It was a real relief for the first time to talk to

someone who understood pain and didn’t immediately think I was drug seeking.

(At the time, my X-rays showed my jaw was severely damaged from the

arthritis) Anyway, I finally was diagnosed with either PA or RA, they still

aren’t sure, about 2 years later. I know I never would have lasted if I

hadn’t found a pain doctor before then. I think I saw 5 or 6

rheumatologists in that time. Not one of them was comfortable with

prescribing pain medication. I think rhematologists do take several classes

in addiction to drugs, but nothing on how to help your patient deal with

pain that the typical medication doesn’t touch. For my own piece of mind,

having a pain specialist has been wonderful. The way this disease moves

around causes various types of pain in different places. My doctor knows

how to treat each type of pain, and which drugs are the safest to use. If I

go there for an injection he uses a fluoroscope or X-ray machine to see

exactly where the medication needs to go. So there isn’t any more shooting

in the dark when it comes to injections. Those weren’t fun, especially when

the injections were in my jaw.

It’s too bad our regular doctors don’t understand pain management. But if

you are a chronic pain patient, then having someone in your corner can mean

the world. I understand how your pain comes and goes. Mine was like that

at first too. But unfornately this is a progressive disease, and it rarely

goes into remission, even though we all pray for that. I wish I had more

advice for you, but unless you can get your doctor to reconsider giving you

medication without a fight, you’ll probably be better off with a pain

specialist.

Good luck and I hope your pain is under control soon. Take

care,

Fran Mishler. PS. I’m posting some pain tips I’ve posted before, incase

they help you at all.

Tips for Dealing With People in Pain

1. People with chronic pain seem unreliable (we can't count on ourselves).

When feeling better we promise things (and mean it); when in serious pain,

we may not even show up. Pain people need the " rubber time " (flexible) found

in South Pacific countries and many aboriginal cultures.

2. An action or situation may result in pain several hours later, or even

the next day. Delayed pain is confusing to people who have never experienced

it.

3. Pain can inhibit listening and other communication skills. It's like

having someone shouting at you, or trying to talk with a fire alarm going

off in the room. The effect of pain on the mind can seem like attention

deficit disorder. So you may have to repeat a request, or write things down

for a person with chronic pain. Don't take it personally, or think that they

are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't

normally bother you may seem too loud or glaring.

5. Patience may seem short. We can't wait in a long line; can't wait for a

long, drawn out conversation.

6. Don't always ask " How are you? " unless you are genuinely prepared to

listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very

temporary). When in pain, a small task, like hanging out the laundry, can

seem like a huge wall, too high to climb over. An hour later the same job

may be quite okay. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates

after a short rest. Chronic pain people appear to arrive and fade

unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or a comfortable

chair, is as important as knowing where a bathroom is. A visit is much more

enjoyable if the chronic pain person knows there is a refuge if needed. A

person with chronic pain may not want to go somewhere that has no refuge

(e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in

pain. Your offer of a pillow or a cup of tea can be a really big thing to a

person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a

body-wide feeling of discomfort, with hard to describe pains in the entire

back, or in both legs, but not in one particular spot you can point to. Our

vocabulary for pain is very limited, compared to the body's ability to feel

varieties of discomfort.

12. We may not have a good " reason " for the pain. Medical science is still

limited in its understanding of pain. Many people have pain that is not yet

classified by doctors as an officially recognized " disease " . That does not

reduce the pain; it only reduces our ability to give it a label, and to have

you believe us.

[Guest guest]

I would tell you doctor the last part of your post...almost word

for word. Let the doc know what your concerns are. What do you have

to lose? -Betz

>

> I cannot take NSAID's anymore (internal bleeding problems), I

can't

> take a lot of the other meds (prednisone, plaquenil, arava, etc)

due

> to other really bad side effects. I've had arthritis for 24 yrs.

> I'm 34 and have 2 kids under the age of 10.

>

> So I'm down to narcotics along with my Enbrel. This works well

for

> me. I have no addiction feelings with the narcotic class (I have

> more addiction issues with soda!!). My new dr. here in phoenix

was

> fine continuing the narcotics (Tylenol 3 when mild flare, or

Percocet

> when not). I felt great at my visit 3 weeks ago, told her regular

> tylenol was working fine, I didn't need more narcotics at this

point

> in time.

>

> Well, about 10 days ago I got into a MAJOR flare. Agony 24/7. I

ran

> through most of my remaining percocet just to get through my busy

> days with the kids. Even so, my husband had to take over some of

the

> driving duties. So I go in to see my Dr., and she wants me to try

> Ultram... she says it's " less addictive " . I'm like, ok, whatever,

if

> it helps me pain wise fine. So I get Ultram, take it, and get the

> most horribly dry cotton mouth ever. So bad I can't even talk

unless

> I swish my mouth with water then talk. And it's not dealing with

the

> pain like it should. Other narcotics cause some dry mouth, but

this

> was really crazy.

>

> So I call my dr. and I have to fight her to give me more Tylenol 3.

>

> So what's going on? Is this another case of poor pain

management?

> Did the dr. just go to an narcanon meeting or what?!

>

> I'm pretty assertive with my dr, but I feel like if I beg for

> narcotics, she's going to assume I want them for an addiction

> problem. It's a catch-22 !!!!!

>

> At this point I'm hoping my flare recedes quickly because I am

> suffering.

>

> Does anyone here have any suggestions?? Anyone been through

this?

>

> -Marietta

>

[Guest guest]

> Does anyone here have any suggestions?? Anyone been through this?

>

>

Marietta,

I hope you are feeling some relief by now. I can feel your

frustration. Before being diagnosed with PA,RA, and Fibro, I

suffered with migraines since my teen years, I am 34 now. I had a

similiar problem with ER and hospitals thinking I was an addict when

I had severe migraine attacks and would go to the ER. But my whole

aspect changed when I changed to an amazing neurologist who when he

started dispensing narcotic med for my migrianes, it was a letter

that stated, he would be the only one who could dispense narcotic

medication for me, basically not doctor shopping for narcotic pain

medication, he gives you a letter to take to the ER/hospital, that

states you are being treating for -----------(fill in condition(s)

and not a drug addict and may need to be treated with narcotic

medication and he should be contacted but in case of an emergency,

please treat. My neurologist has also been really great about

working together with my rheumatologist, so this is the one that

aspect that is working well. I have seen examples of the letters

online. This might be one option for you.

Debbie

[Guest guest]

Im so sorry Marietta i have had Psoriatic Arthritis since I was in my late

teens. I am now 45. Im a man if that matters to you. I am very active and have a

great life even through the constant fighting with doctors. I don't think most

of them have a clue of what kind of monster there dealing with. We have to wake

up in hell everymorning and getting through the night with minimal sleep is a

serious problem. I swear I have had every possible thing go wrong that can. I am

currently on Remicade and a lo dose of oxycontin. I have had over 20 surgries to

repair tendons and fuse joints. My desise is so much better after the Remicade

treatments started so the pain meds had to go. I enitiated this on my own. I was

doing real good at tapering them down when had to get a new doctor because of

insurance problems. He decided I didn't need pain med at all so it was cold

turkey time. After several months a complete hell I had a heart attack. It is 3

years later now and as far as I know

Im doing ok. I had to go to a counsler and see a doctor just for pain control

and now addiction problems. I really don't know what the answer is but just find

a doctor that will understand the disease and espically you. The stress alone

can take you out. They tell me that my disease is at an extreme from some. You

just have to stick up for yourself but also keep positive. Thats a hard

combination. Ill try and write more if you want specifics.

Jon

Marietta <mariettashirk@...> wrote: I

cannot take NSAID's anymore (internal bleeding problems), I can't

take a lot of the other meds (prednisone, plaquenil, arava, etc) due

to other really bad side effects. I've had arthritis for 24 yrs.

I'm 34 and have 2 kids under the age of 10.

So I'm down to narcotics along with my Enbrel. This works well for

me. I have no addiction feelings with the narcotic class (I have

more addiction issues with soda!!). My new dr. here in phoenix was

fine continuing the narcotics (Tylenol 3 when mild flare, or Percocet

when not). I felt great at my visit 3 weeks ago, told her regular

tylenol was working fine, I didn't need more narcotics at this point

in time.

Well, about 10 days ago I got into a MAJOR flare. Agony 24/7. I ran

through most of my remaining percocet just to get through my busy

days with the kids. Even so, my husband had to take over some of the

driving duties. So I go in to see my Dr., and she wants me to try

Ultram... she says it's " less addictive " . I'm like, ok, whatever, if

it helps me pain wise fine. So I get Ultram, take it, and get the

most horribly dry cotton mouth ever. So bad I can't even talk unless

I swish my mouth with water then talk. And it's not dealing with the

pain like it should. Other narcotics cause some dry mouth, but this

was really crazy.

So I call my dr. and I have to fight her to give me more Tylenol 3.

So what's going on? Is this another case of poor pain management?

Did the dr. just go to an narcanon meeting or what?!

I'm pretty assertive with my dr, but I feel like if I beg for

narcotics, she's going to assume I want them for an addiction

problem. It's a catch-22 !!!!!

At this point I'm hoping my flare recedes quickly because I am

suffering.

Does anyone here have any suggestions?? Anyone been through this?

-Marietta

---------------------------------

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Marietta, how did you know you had internal bleeding problems?

It could be your doc is afraid of getting in trouble with whoever

oversees the number of prescriptions for narcotics, I have had that

problem with some doctors. More than once I've been " fired " as a

patient when the doc had prescribed " Controlled " meds for quite some

time and it was obvious he would have to continue.

I am lucky to have an old internist that will give me anything and

thumbs his nose at the powers that take doctor's licenses for over

prescribing those meds. So no matter what kind of doctor is

treating me, I can get the meds from my old internist. Sometimes he

just hands me his prescription pad and tells me to write out what I

want and he'll sign it. Everyone needs a doc like this around.

Hollie

> I cannot take NSAID's anymore (internal bleeding problems), I

can't

> take a lot of the other meds (prednisone, plaquenil, arava, etc)

due

> to other really bad side effects. I've had arthritis for 24 yrs.

> I'm 34 and have 2 kids under the age of 10.

>

> So I'm down to narcotics along with my Enbrel. This works well

for

> me. I have no addiction feelings with the narcotic class (I have

> more addiction issues with soda!!). My new dr. here in phoenix

was

> fine continuing the narcotics (Tylenol 3 when mild flare, or

Percocet

> when not). I felt great at my visit 3 weeks ago, told her regular

> tylenol was working fine, I didn't need more narcotics at this

point

> in time.

>

> Well, about 10 days ago I got into a MAJOR flare. Agony 24/7. I

ran

> through most of my remaining percocet just to get through my busy

> days with the kids. Even so, my husband had to take over some of

the

> driving duties. So I go in to see my Dr., and she wants me to try

> Ultram... she says it's " less addictive " . I'm like, ok, whatever,

if

> it helps me pain wise fine. So I get Ultram, take it, and get the

> most horribly dry cotton mouth ever. So bad I can't even talk

unless

> I swish my mouth with water then talk. And it's not dealing with

the

> pain like it should. Other narcotics cause some dry mouth, but

this

> was really crazy.

>

> So I call my dr. and I have to fight her to give me more Tylenol 3.

>

> So what's going on? Is this another case of poor pain

management?

> Did the dr. just go to an narcanon meeting or what?!

>

> I'm pretty assertive with my dr, but I feel like if I beg for

> narcotics, she's going to assume I want them for an addiction

> problem. It's a catch-22 !!!!!

>

> At this point I'm hoping my flare recedes quickly because I am

> suffering.

>

> Does anyone here have any suggestions?? Anyone been through

this?

>

> -Marietta

>

[Guest guest]

>

> I'm pretty assertive with my dr, but I feel like if I beg for

> narcotics, she's going to assume I want them for an addiction

> problem. It's a catch-22 !!!!!

>

> At this point I'm hoping my flare recedes quickly because I am

> suffering.

>

> Does anyone here have any suggestions?? Anyone been through this?

>

> -Marietta

Hi Marietta,

I have not had a prolem and my doctor gives me vicadin as needed. I

try not to take them all the time only because I have noticed that

one extra strength used to help great and now it is not as

effective. I try to space it out to not build up a tolerance. I

have heard that when some doctors will not help with pain that if you

go to a Pain management center they will be generous helping with

painkillers.

That is just what I have heard.

Janet

[Guest guest]

---, " Marietta "

I'm sorry you're having such pain and I can empathize. Your lucky if

your Dr will give you narcotics--most won't, I was told it's

not " protocol " and they could lose their license.

So I suffer in agony most days.

I hope you feel better soon.

Dawn>

[Guest guest]

Marietta - sadly this is a common reaction of many docs who's primary

business is not pain treatment. Physicians with pain training or with

a painful ailment themselves are the only docs I've run into that

understand the treatment of pain without value judgements. I suggest

going to a pain clinic and discussing the situation.

Either way, you are the patient paying the bills. You should be

satisfied one way or another, it is the reason you are going to the

doc in the first place...

Best of luck -

[Guest guest]

I've read everyone's postings about pain meds and for my AS (or the

AS component of my PA), Neither Tylenol 3's nor straight codiene

ever touched my pain. All they ever did for me was give me

contipation - about the only common problem I never had before

taking them...LOL. At first, Enbrel worked well enough for me to

grant me a bit of a break from the pain. When I started having

having reactions to the Enbrel, I started getting new (some very non-

specific) pains I had never had before. I am currently taking a low

dose of prednisone - hopefully for not for so long that I become too

damaged from it. It worked very well at first - so well that I

overdid things and I have been slowly trying to recover ever since.

The pain (or at least most of it) has only left me but a few hours

here and there for the last 15 years. I do get brief pain-free

moments that I work to stretch through my imagination and

breathing. Meditation helps when I am really hurting.

Yesterday, I spent an hour nearly vomiting from both axial and

generalized pain. My body was in revolt and it made meditating my

way out of it very difficult. When I got home in the late

afternoon, I slept for a couple of hours and that made the pain

somewhat bearable again; but it was still difficult for my lovely

wife, as i had to " check out " from being involved with our family.

She was lonely and she had extra duty to do (dishes, supper,

laundry, etc.) because I was, once again, helpless. I watched her

quitely cry herself to sleep beside me and there was nothing I could

do.

Today is a better day - I made pancakes for everyone this morning!

Brent

[Guest guest]

Hi Marietta,

I'm living in the place you were lucky to escape.(Seattle/Lake

Tapps). I have been here 7 miserable years. My hubby can't transfer

b/c his job is only here (Alaska Airlines). I have no family- and

few friends. On top of that a crappy doc who getting pain meds is

like pulling teeth. I have been on vicoden for a few years. It takes

me about 2 months to use 30 pills. I have never abused my pain meds.

When I told him I needed him to 'UP' the vicoden b/c the low dose

wasn't helping he looked at me like I was asking for cocaine! After

begging and telling him I need it a few times a month to make it

through a bad day he finally relented. He says I need to feel the

pain b/c that brings me to him and we can fix the problem. Only

thing is he doesn't believe me when i tell him it takes 2 months to

get in to see him.

I told him the fatigue is probably the worst symptom. Im also 34

with 2 young boys. I asked him for provigil (because some people in

here take it and it really seems to work) Again- he looked at me

like I was a druggy and said- thats out of my hands you need to talk

to your primary care for that one.

Vicoden makes my mouth like cotton too! I hate it- i can barely

talk. But, it does relieve my pain so Im willing to deal with it.

I read your intro- and Im from Louisiana- moved here 7 years ago. It

gets so bone cold here my hands and feet LITERALLY turn BLACK. Like

a dead person! People sometimes notice and say something. As long as

I jump in a scorching hot bath it will go away.

Youre lucky to be in the warmed climate.

My prayers are so with you...I have thought a lot about you since

your post.I hope along with your move you will finally get some

peace from PA.

God Bless, Tricia

[Guest guest]

Marietta,

Tell your doctor that you understand the effects of

addiction from the drug but when you weigh it out in

both hands which is the worse of two evils addiction

or pain. I had to do my doctor that way, and she

agreed, it is my body and I do not want the pain. She

did as I asked after I explained it to her that way.

Hope the best for you. Sharon

__________________________________________________

[Guest guest]

I started bleeding internally after an ovarian cyst.... I lost one

ovary, and had internal bleeds for a month that required several

abdominal surgeries / blood transfusions. Consults between my ob/gyn &

my rheumy concluded that long term NSAID use did this to me, and it

would just get worse if I continued.

-Marietta

> Marietta, how did you know you had internal bleeding problems?

>

> It could be your doc is afraid of getting in trouble with whoever

> oversees the number of prescriptions for narcotics, I have had that

> problem with some doctors. More than once I've been " fired " as a

> patient when the doc had prescribed " Controlled " meds for quite some

> time and it was obvious he would have to continue.

[Guest guest]

Thank you everyone for your responses! As you know, it's difficult to

make any sort of rational decision when in extreme pain. I've found a

pain clinic in my area, I'm going to call tomorrow for an appt. I'm

not having any rapid joint degradation (I've just had a ton of x-rays

come back normal), so at this point PAIN is my main issue. The Enbrel

is keeping the damage at a minimum as it has the past 5 yrs. So I will

visit the pain clinic and see what they have to offer.

Thanks again for your stories & encouragement! I have a very busy

week ahead of me!!

-Marietta

[Guest guest]

Tricia,

Wow, our stories have so many similarities!! I too had no family

anywhere we've lived in the past 12 yrs... and it makes it SO hard on

the spouses, and us, to be stuck in one spot with an icky climate.

I also take ages to go through my pain meds, I take 1/2 percocet at a

time (Vicodin started giving me heart palpitations... now when I say

I can't take that & need percocet, I get the eye like I'm an addict

<sigh>). Hubby told me that the FDA just approved 90 day

prescriptions for narcotics for pain management. I wish our dr's

would take advantage of that!!

Anyway, thanks for the post. Nice to know someone in my same shoes

-Marietta

> Hi Marietta,

>

> I'm living in the place you were lucky to escape.(Seattle/Lake

> Tapps). I have been here 7 miserable years. My hubby can't transfer

> b/c his job is only here (Alaska Airlines). I have no family- and

> few friends. On top of that a crappy doc who getting pain meds is

> like pulling teeth. I have been on vicoden for a few years. It

takes

> me about 2 months to use 30 pills. I have never abused my pain

meds.

[Guest guest]

Brent, that just SUCKS. Today has been a severe nausea day due to

uncontrolled pain.

Sometimes I think it is harder on men with arthritis because at least

social sterotypes say it is ok for women to be somewhat dependent on

others. With men, you run up against the men are a rock to weather

the storm with.

Any way you cut it, chronic illness plays havoc with our families &

relationships. The athritis foundation puts out a great book

called " Beyond Chaos: One man's journey alongside his chronically ill

wife " . The book is only $3.95 with no shipping!! It's a thick

paperback, and I read it, very interesting from the caretakers point

of view.

-Marietta

[Editor's Note: Many women on this list are not dependent on men and, indeed,

often are THE only parent a child will ever know. Many women ARE the rocks.

Being strong for others is not the exclusive domain of men so we salute ALL the

people who have to be strong for their families. Kathy F.]

> Yesterday, I spent an hour nearly vomiting from both axial and

> generalized pain. My body was in revolt and it made meditating my

> way out of it very difficult. When I got home in the late

> afternoon, I slept for a couple of hours and that made the pain

> somewhat bearable again; but it was still difficult for my lovely

> wife, as i had to " check out " from being involved with our family.

> She was lonely and she had extra duty to do (dishes, supper,

> laundry, etc.) because I was, once again, helpless. I watched her

> quitely cry herself to sleep beside me and there was nothing I

could

> do.

>

> Today is a better day - I made pancakes for everyone this morning!

> Brent

>

[Guest guest]

Hi Tricia,

I am so sorry to hear you are having Doc problems, too. I am to the point

of going to a new one. I belong to Kaiser Permanente, so that is an option at

any time. I just have to drive further. I believe that a doctor who does

not help you or connect with you is useless, so maybe you should shop for

another one also. A city the size of Seattle has to have more than one to

choose

from. We were just in your city for one night and I was so looking forward

to some cool weather, living here near Sacramento it has been HOT for too

long. I cannot tolerate the heat, so I have been shut in for with the A/C. I

am also plagued with bad

fatigue (I also have fibromyalgia), and I cannot imagine trying to keep

track of 2 young ones the way I feel. Maybe you can connect with and

that also live in that area. Perhaps they have a better rheumy that

they

will accept you as a patient with their recom-

mendation. Your message to comfort Marrieta wihile you are in such pain

shows your strength as a person and your blessing shows the strength of your

Faith in God, so I just know things will improve for you soon. Just keep

writing to us here and we will do all we can to support you. I would also send

you

a lot of hot weather in a bottle if it were possible.

God loves you and will help you with your pain. Till later,

Janet in Ca

[Guest guest]

Hi, Tricia! Where in Louisiana are you from? I'm near Baton Rouge.

Do you ever get back here to visit?

The problem with your feet turning colors could be Reynaud's? Have

your doctors given you any definitive diagnosis on what is causing

that?

So sorry that you are in so much pain. It doesn't seem like 30

Vicodin pills over several months would be anything for a Dr. to worry

about. Are there other rheumies you might consider going to? It just

chaps my behind that so many of us have to deal with clueless doctors-

as if dealing with PA itself were not enough!

Do you know whether your rheumy has much experience with PA? He

sounds like a jerk, either way. Is there a pain clinic in your area?

You should consider going there.

take care,

sherry z

>

and Im from Louisiana- moved here 7 years ago. It

> gets so bone cold here my hands and feet LITERALLY turn BLACK. Like

> a dead person! People sometimes notice and say something. As long as

> I jump in a scorching hot bath it will go away.

[Guest guest]

Brent reminds us that some non-drug things can help (a little!) with

the pain:

1) Rest, especially sleep. Not always possible since the pain keeps

us awake or awakens us, but it's always worth trying! Even a 5 minute

nap can be refreshing to body and mind.

2) Meditation or prayer. I practice the latter. For those of you who

are Christians, I highly recommend a book called " Making Sense Out of

Suffering " by Kreeft. He is a Catholic theologian at Boston

College, but even us Protestants (LOL!) will benefit greatly from this

book. It is the best Christian perspective, in my opinion, on this

subject - and I'm Protestant. (Shocking, I know! lol!) Atheists and

agnostics might find it interesting just to see what us " crazy "

Christians are thinking.

3) Mental occupation - crossword puzzles, sudoku, watching a movie,

etc. Any mental activity that is not in itself stressful (that

eliminates balancing one's checkbook! LOL) can help distract us from

pain a little bit. I have to pace my difficulty level in sudoku to my

pain. If it's really bad, I work on an easy one - can't concentrate

well enough to do a medium or hard one! I keep suduko books that vary

in difficulty level and save the easy ones for the excruciating pain

times.

4) Heat or cold - heating pads, ice bags, soaking in a tub or jacuzzi,

etc. I got one of those foot baths that you fill with warm water and

then it circulates and massages my feet. Helps some when they are so

horribly painful. I also have one of the rice bag thingies that you

heat in the microwave which can sometimes help my back and neck pain a

lot. Not always, but sometimes - worth a try anyway.

5) Sitting in the sun. I've been sitting in the sun about 15 minutes

a day and I think it's helping a little. Good for the skin usually,

too. Maybe it's just the fact that I'm stopping and sitting and

chilling out for a few minutes, but whatever the reason - it's making

me feel better and that's what counts.

6) Stretching. I'm trying to strectch my calf muscles several times a

day to prevent getting bad fasciitis in my feet again. The ankle and

toe pain is tending to tighten and shorten that calf muscle, which

makes it likely to get pain from the fascia and other connective

tissue. I find that making sure to stretch them often helps moderate

the foot pain a bit. I do 3 very simple stretches every few hours. I

can give more specific info if anyone needs it.

7) Pacing yourself. Get a cheap timer and set it for 15 minutes.

When it goes off, either sit down for a few minutes or at least stop

what you are doing and stretch a little, rest your eyes, take stock of

how you feel. I find that if I alternate 15 minute intervals on my

feet with 15 minutes intervals of desk or other non-physical work

throughout the day, I have less " punishment " pain and can get more

done in the long run. If you can't do 15 minute intervals, try for 30

minute intervals. I think it's especially important to get off your

feet. No matter where the pain is, the load-bearing on the joints

when we stand is greater.

Feel free to add to this list!

EAch of these things might only help a tiny bit, but if we use several

techniques, it can put at least a " dent " in the pain.

best regards to all,

sherry z

>

When I got home in the late

> afternoon, I slept for a couple of hours and that made the pain

> somewhat bearable again; but it was still difficult for my lovely ...

>

[Guest guest]

Hi All. I rarely post but love reading what everyone has to say. I just had to

give a shout out to the folks in Louisiana - I'm in Lake . I have a

wonderful rheumy here and he has never blinked once at giving pain meds to me.

In fact, he asked me if I needed a refill at my last visit. I take 10mg Vicodin

but usually broken in half unless it's really bad. I can stretch them out over

a couple of months usually. After the Hurricane (Rita), I had such a bad flare

and everything was closed when we returned so I had to go to Houston to see a

rheumatologist. Again, she never batted an eye at prescribing pain meds. In

fact, was suprised at my second visit that I still had so many left. I firmly

believe as everyone here has said, you need a rheumatologist that takes a

personal interest in your needs - otherwise, it is just pointless and you feel

worse than if you would have just stayed home. My doctor is sympathetic to my

pain without making me feel like a disabled

person or a druggy. Hope that this helps. You deserve to live as pain free as

possible.

Cheryle

[Editor's Note: Unfortunately, the few people who seriously abuse pain

medications have ruined it for the majority who truly need it and doctors have

become afraid since they often cannot discern between the person addicted to

pain - but not because of pain - and the person in need of pain killers because

they live in constant pain. So often, it is the few who ruin it for the rest of

us. I blame the abusers more than I blame a doctor who is asked to play

to try to figure out which one I am. I also blame the doctors that prescribe

painkillers to anyone that asks as they are the ones that help create addictions

in the first place. Kathy F.]

[Guest guest]

Hi, Cheryle! If I ever get back to being to able to drive long

distances, I'll be passing through LC on my way to visit my eldest

daughter in Houston. I'll let you know - maybe we can meet at a

coffee shop.

sherry z

>

> Hi All. I rarely post but love reading what everyone has to say. I

just had to give a shout out to the folks in Louisiana - I'm in Lake

.

[Guest guest]

Got to say that my rheumatologist is always asking me if I need pain

meds. Before I had my hip replaced, the pain was bad enough that I

gave in and agreed to try Ultracet. I made that one bottle of pills

last nearly an entire year.....he couldn't believe it. He doesn't

depend on prescribing me pain pills alone though. My rheumatologist

is the CEO of a chronic pain center. When I am complaining of

increased pain, he prescribes physical therapy and administers nerve

blocks and occasionally steroid injections or a Medrol DosePak if

needed, along with the occasional pain pill to relieve the symptoms.

Now that I've had the hip replaced, the severe pain is gone and I

don't need the Ultracet any more (yet. Where's something wood to

knock on?) I can't believe how much better I feel. Of course, now I

can notice all the nagging little aches in my hands, feet, and lower

back....but the Aleve works fine (at a dosage of 1500 mg daily) to

clear that up. It's basically more the stiffness in the mornings or

after sitting for awhile (like the hour long drive to work and back)

that bothers me. It will take at least half an hour to an hour each

time to work the stiffness out before I can start moving freely

again. Anybody have any suggestions on how to work out the stiffness

more easily/rapidly? (Don't suggest hot showers or heating pads or

ice. At home I can do that, and it does work great, but not at work!)

[Guest guest]

Sherry,

That would be great. Believe it or not, I don't think I have ever actually

met another person with PA. Hope you feel better soon and let me know if you

head this way and I'll do the same.

Cheryle

---------------------------------

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[Guest guest]

Hi dreimutter1957

Man, you should be the poster child for the benefits of seeing a pain

specialist! You have a very humane and reasonable rheumatologist, keep

him close!

For the stiffness from sitting - etc. The thing that has helped me the

most is regular stretches. Not every leg / back / shoulder stretch

worked for me, I tried different ones until I found those that helped

the most. I still get stiff sitting too long, but I can usually

stretch most of it out without much problem. I try to do my back /

shoulder stretch routine 4-5x a week. Doesn't take long, maybe 10-15

minutes tops.

Best regards -

[Guest guest]

In a message dated 9/12/2006 10:36:37 A.M. Pacific Daylight Time,

dreimutter1957@... writes:

It's basically more the stiffness in the mornings or

after sitting for awhile (like the hour long drive to work and back)

that bothers me. It will take at least half an hour to an hour each

time to work the stiffness out before I can start moving freely

again. Anybody have any suggestions on how to work out the stiffness

more easily/rapidly? (Don't suggest hot showers or heating pads or

ice. At home I can do that, and it does work great, but not at work!)

One thing that might work is sitting on a balance ball chair...it's an

exercise ball that sits in a cradle on wheels (~$80 at Gaiam.com). The way it

works...in order to stay balanced on the ball, you constantly move slightly.

This movement keeps the spine moving, which lubricates the spinal joints and

helps prevent some of the stiffness. And for me, starting to type at work

loosens my finger joints up...