pain management

[Guest guest]

i disagree barb....those like us who take pain meds to only block pain can

also become addicted......u do not need to use them for a rush......just for

a constant.....pain free feeling....not looking for a high just to be pain

free unfortunatly that is only possible whith some type of chemical

dependance.......Reid

[Guest guest]

In a message dated 1/31/00 2:58:29 AM Eastern Standard Time,

blfitzma@... writes:

<< We are taking pain meds to relieve the chronic pain that we live

with everyday. If we stop having pain, we don't feel a need to

take a pain med. We are not looking for a rush or a high. >>

you have a valid point Barb, but the meds given often inflict a chemical

dependancy of sorts once you use them long-term.....even if your pain

lessens...

but you are right...if they are being used properly for pain management and

the source of the pain is treated...pain meds should be able to be

discontinued....

I have to say...in both ways...you are both right....

recently exhanged e-mails with someone who seemed to be on high doses of meds

for pain in addition to the lyme treatment, and I was just told he is off of

everything.....for a few months now...he is living proof to me of Barb's

statements...Bernadette

[Guest guest]

I wanted to let everyone know that when my daughter was at her worse she was

on Fentynl patches and 2 or 3 meds for break through pain. We are talking

heavy duty narcotics, I was scared to death about giving them to her. She

was on them for quite an extended period of time but when the pain started

lessoning we were able to wean her off of them just fine. We didn't try to

do it all at once. She is off all pain meds at this time as her Lyme seems

to be under control. I pray every day that this lasts. She has had periods

before that she has been in remission or whatever. I would definately give

all of the meds again if it gave her even some relive from the horrible pain

she lived with.

Meg No. CA

Re: [ ] Pain Management

> From: BratDet@...

>

> In a message dated 1/31/00 2:58:29 AM Eastern Standard Time,

> blfitzma@... writes:

>

> << We are taking pain meds to relieve the chronic pain that we live

> with everyday. If we stop having pain, we don't feel a need to

> take a pain med. We are not looking for a rush or a high. >>

> you have a valid point Barb, but the meds given often inflict a chemical

> dependancy of sorts once you use them long-term.....even if your pain

> lessens...

> but you are right...if they are being used properly for pain management

and

> the source of the pain is treated...pain meds should be able to be

> discontinued....

> I have to say...in both ways...you are both right....

> recently exhanged e-mails with someone who seemed to be on high doses of

meds

> for pain in addition to the lyme treatment, and I was just told he is off

of

> everything.....for a few months now...he is living proof to me of Barb's

> statements...Bernadette

>

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

[Guest guest]

Thanks Meg,

That is so good to know that she could be weaned off the meds when pain

finally relented. I have been feeling really down about this whole thread,

I don't want to depend on any meds, not abx, not pain pills, not even

vitamins. I just don't know what else to do. I asked my doc for the pain

patch but he said no as he felt that I would become addicted, as do several

others on this list. I even called him at home on Sunday (via his answering

service) as his office had not returned my calls to his office Thursday and

Saturday of last week. Finally my husband got fed up with watching me

suffer and called the office for a referral to a pain mgt. clinic, I have

yet to get the referral and my appt. is for Feb. 9th. I am starting to

think my doctor and his staff just wish I would disappear....me too. I am

so happy your daughter is doing well and pray it continues for both your

sakes.

Hugs,

Marta

> From: " Family " <hughes@...>

>

> I wanted to let everyone know that when my daughter was at her worse she

was

> on Fentynl patches and 2 or 3 meds for break through pain. We are talking

> heavy duty narcotics, I was scared to death about giving them to her. She

> was on them for quite an extended period of time but when the pain started

> lessoning we were able to wean her off of them just fine. We didn't try to

> do it all at once. She is off all pain meds at this time as her Lyme seems

> to be under control. I pray every day that this lasts. She has had periods

> before that she has been in remission or whatever. I would definately give

> all of the meds again if it gave her even some relive from the horrible

pain

> she lived with.

> Meg No. CA

> Re: [ ] Pain Management

>

>

> > From: BratDet@...

> >

> > In a message dated 1/31/00 2:58:29 AM Eastern Standard Time,

> > blfitzma@... writes:

> >

> > << We are taking pain meds to relieve the chronic pain that we live

> > with everyday. If we stop having pain, we don't feel a need to

> > take a pain med. We are not looking for a rush or a high. >>

> > you have a valid point Barb, but the meds given often inflict a chemical

> > dependancy of sorts once you use them long-term.....even if your pain

> > lessens...

> > but you are right...if they are being used properly for pain management

> and

> > the source of the pain is treated...pain meds should be able to be

> > discontinued....

> > I have to say...in both ways...you are both right....

> > recently exhanged e-mails with someone who seemed to be on high doses of

> meds

> > for pain in addition to the lyme treatment, and I was just told he is

off

> of

> > everything.....for a few months now...he is living proof to me of Barb's

> > statements...Bernadette

> >

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

[Guest guest]

I was wondering what are people's experiences with Pain Management

doctors or clinics etc.?

thank you

lea

[Guest guest]

I had some Pain Management Drs that I felt took advantage of my suffering. Then

I also found one that got right to the root of my problem and took care of it

immediately. Jeannie in N.C.

[ ] Re: Pain Management

I was wondering what are people's experiences with Pain Management

doctors or clinics etc.?

thank you

lea

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[Guest guest]

Hi Lea,

I have had a very positive relationship with my pain doctor, he is very

sympathetic to Lyme patients and understands the type of pains we get. I am

going on my 6th year with this disease, I did not find my Pain doctor until

February 1999. My pains were getting more difficult to deal with and my

LLMD was reluctant to give me any strong pain meds. I happened to notice

that pain doctors were covered by my insurance and I knew there was a local

pain clinic nearby so I made an appt. My LLMD was relieved and asked me to

let him know how it goes so he could refer others. I go to the Pain clinic

once a month, I either get refills of my meds or I see the doctor if I need

to. I still have to pay the copay for the specialist fee whether I see him

or not, which is the only downside. The strongest med I am on is Oxycontin

20mg 3 times daily. The pain doctor recently upped my Neurontin to 2400mg

daily, and gave me Baclofen 20mg 3 x day, this is a drug they give to MS

patients for nerve pain. The other meds I take are anti-inflammatories, I

have tried them all and am having difficulty taking them as they cause my

feet and hands to swell.

I only wish I had found this doctor years ago.

Good luck,

Marta

----- Original Message -----

From: <memyo1@...>

> I was wondering what are people's experiences with Pain Management

> doctors or clinics etc.?

> thank you

> lea

[Guest guest]

I'd like to thank everyone who has responded for their input.

thanks a lot

best,

lea

[Guest guest]

What is FMS? Is that FibroMyalgia? If it is what is the best treatment for it?

The Drs are saying that my Lyme has not returned (me I'm holding out for test

results to see if it's Lyme again), they say I have FibroMyalgia or Myofascial

Pain Syndrome. Either way my feeling is that it was caused by the Lyme.

Jeannie in N.C.

[ ] Pain Management

Now my experience with a pain management clinic is over 10 years old, but I

think it is still relevant. There are two kinds of clinics. One is run by

physical therapy with

complementary therapies. The other kind is usually run by a neurologist or

anethesiologist and rely more on medical procedures and pain medication. I

went to the former, and was not pleased. I was dx with fms in 1988 and have

been to many physical therapists after each surgery and after injuries. Each

time, little progress was made but I did pick up a few tricks to put in my

basket. Thats what I can say about the pain management clinic I went to.

There was a wonderful woman who ran the clinic, but left shortly into my

therapy due to conflicts with the PT dept. She was an ex-dancer and know

alot about body mechanics. She taught me about movement in ways I never

knew, and I still use them. I found I constantly held my shoulders up near my

ears due to stress. She taught me to do body scans, along with breathing.

She also had me reading about how past stressors can cause illness in the

body, which was eye opening and helped me in my con-current

psychotherapy(which was not part of the clinic: I had started it for

problems with my past and child rearing issues).

They insisted I worked with a psychologist at $160 an hour practicing

biofeedback.

I didn't find out till weeks into the therapy that my ins. would not cover

biofeedback.

At 3 sessions a week, I was out of a whole lot of money, and caused alot of

stress at home. I tried to be assertive and ask to be dismissed of the

biofeedback, but was treated as if I was being resistant to treatment. The

only thing I learned in the sessions, was to warm my hands up by 3 degrees.

Geez I could wear gloves for a lot less money!

My Occupational therapist was great. She taught me how to conserve energy

around the house. She video taped me doing household chores, and then showed

me how I was standing badly, and to learn to correct it.

The PT was the disaster, because they had no idea about fms. I didn't get

one PT each time, so I had to explain, each time, how I had difficulty doing

alot of the therapy. Deep tissue massage left me crying and black and blue.

Anything over 5 pounds lifted, was a disaster to my body. I just had a hard

time getting the idea across that my body doesn't heal like others. The

water therapy was about the best thing they had for me. Since then, I have

had 2 therapists that studied fms during graduate school, and understood my

plight.

I know this is long, but I hope it helps those deciding. Dr. B lists a

specific course of action for PT. I plan to use that if I should go back to

a PT again. PT is very expensive. Some places want $30 to place an ice pack

on your body. Ask around, and find out your cost up front, so you don't wind

up taking out a second mortgage to pay off your bills.

In forever hope,

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Please send messages not related to Lyme disease (this includes humor and

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The archives can be accessed at

The chat room is always open!

/chat

[Guest guest]

Oxycontin is a 12 hour release tablet. I take 40 mg 4 times a day and

percocet for breakthrough pain and it really helps alot.or ask the doc for 80

mg two times a day on the oxycontin. He may want to start you out lower but

it depends on your pain threshold goodluck

Patty

[Guest guest]

I have been holding steady with 20mg of Oxycontin 3 x day for well over a

year. I take anti-inflammatories for joint pains and Neurontin and Baclofen

for nerve pain. This is under the care of a board certified pain

specialist. Before I got to see him I was in constant, unrelenting pain, I

have come a long way. Not that I don't continue to get break through pain,

I do, I take more anti-inflammatory drugs when that happens. I wish there

was a way to measure one's pain threshold, I know we all are different.

Marta

----- Original Message -----

From: <DMGPMG1@...>

> Oxycontin is a 12 hour release tablet. I take 40 mg 4 times a day and

> percocet for breakthrough pain and it really helps alot.or ask the doc for

80

> mg two times a day on the oxycontin. He may want to start you out lower

but

> it depends on your pain threshold goodluck

> Patty

[Guest guest]

Hi Charlene,

The only thing that reduced my pain in the joints and muscles is when

they put me on Zithromax 600 mgs a day. Have been on it a long time,

controls my lyme. If I go off it the pains is unmanagable,

Hugs,

Connie, MI

[Guest guest]

> Hi Charlene,

> The only thing that reduced my pain in the joints and muscles

is when

> they put me on Zithromax 600 mgs a day. Have been on it a long time,

> controls my lyme. If I go off it the pains is unmanagable,

> Hugs,

> Connie, MI

Connie,

This type of pain was a mild to moderate problem prior to my dx and

begining treatment in April (doc says I'm late, late, stage ), but

NOW, ouch, ouch, ouch! I've been barely able to walk for past 3 days.

Hubby says I walk like the female version of Quasimoto. Help me to

understand something: I thought the original pain was from the

infection and the increase in pain is from the toxins released from

the die-off. Is this right? And if so, why does Zithromax eliminate

the pain? I can never tell if I'm getting better or worse. I'm still

learning and fog is thicker than usual today.

Thanks,

NurseDeb

[Guest guest]

-

I'm not sure if someone has responded with the same info I'm about

to give - I've been remiss in checking the group mail.

I've been on a combo of Neurontin and Methadone (your doc would need

to assess the dosage, times of day and combination) and it works

well. Of course, I try to keep on the 'low end' of the dosage so

that when I DO need some real help, for instance my long distance

doc's appts, it's there for me. I've been going to the same

Neurologist since Jan 2003 and she's the one that's 'in charge of'

my pain management. When I truly need a boost, she also prescribed

Oxycondone to be taken in the afternoon with my

methandone/neurontin/xanax afternoon 'cocktail.' I'm on low doses

of everything except the Neurontin - 800mg tabs - but it does the

trick. As with most medication adventures, it takes a while to get

the correct dosages, combos, and times of day so that sleep is not

interupted.

So sorry to hear about your severe adverse reactions to the meds

you've tried so far. Hope this opens up another, more positive

avenue.

Sheryl

>

> I never see anyone mention it, but is anyone else in severe pain

> from Lyme? What do you take for the pain? I've not had the best

care

> from drs in regards to pain. However what little I have been

> prescribed either never worked, worked briefly or made me ill. I'm

> currently taken voltaren 100mg ER which works some days, but get

> breakthrough pain and is messing with my stomach. Salsalate,

Darvon,

> Percodan all quit working. Hydrocodone makes me vomit for 36 hrs

> from one dose. Elavil makes me dizzy at the smallest dose made.

> Tramadol taken in tiny doses alternates between keeping me wide

> awake or so drowsy I pass out at work, so its unpredictability

makes

> it hard to take and only half way works on pain. Flexril helps a

> little but if I take it more than 3 times a week it loses

> effectiveness. Wellbutrin taken in hopes of stopping nerve pain

> causes seizures and severe eye pain. Relafen is like eating candy-

> doesn't work at all. Cannot take anything with tylenol because of

> already elevated liver enzymes.

>

> So anyone have any suggestions? My dr thought about putting me on

> Duragesic patches, but wanted to wait till I tried out Relafen.

I'm

> apprehensive to take narcotics because I can't afford to get sick

or

> drowsy at work and can't just stay home in bed. I've read the

> Duragesic patches can cause vomiting, drowsiness and cause major

> withdrawl symptoms if you run out. I'm also allergic to adhesives

in

> bandages so not sure my skin could handle it. ( I reacted to

> hypoallergenic paper tape so bad the dermatologist told me I got a

> staph infection from it!) Am I alone in pain and in all these

> dilemias?

>

>

>

[Guest guest]

-

Ask about Lyrica too. It helps with the burning pain. It is like

neurontin but works faster. It is very expensive and some insurances

will not pay for it.

Pain is my worse symptom.

- In , " Sheryl " <jsguard642@...> wrote:

>

> -

>

> I'm not sure if someone has responded with the same info I'm about

> to give - I've been remiss in checking the group mail.

>

> I've been on a combo of Neurontin and Methadone (your doc would

need

> to assess the dosage, times of day and combination) and it works

> well. Of course, I try to keep on the 'low end' of the dosage so

> that when I DO need some real help, for instance my long distance

> doc's appts, it's there for me. I've been going to the same

> Neurologist since Jan 2003 and she's the one that's 'in charge of'

> my pain management. When I truly need a boost, she also

prescribed

> Oxycondone to be taken in the afternoon with my

> methandone/neurontin/xanax afternoon 'cocktail.' I'm on low doses

> of everything except the Neurontin - 800mg tabs - but it does the

> trick. As with most medication adventures, it takes a while to

get

> the correct dosages, combos, and times of day so that sleep is not

> interupted.

>

> So sorry to hear about your severe adverse reactions to the meds

> you've tried so far. Hope this opens up another, more positive

> avenue.

>

> Sheryl

>

>

> >

> > I never see anyone mention it, but is anyone else in severe pain

> > from Lyme? What do you take for the pain? I've not had the best

> care

> > from drs in regards to pain. However what little I have been

> > prescribed either never worked, worked briefly or made me ill.

I'm

> > currently taken voltaren 100mg ER which works some days, but get

> > breakthrough pain and is messing with my stomach. Salsalate,

> Darvon,

> > Percodan all quit working. Hydrocodone makes me vomit for 36 hrs

> > from one dose. Elavil makes me dizzy at the smallest dose made.

> > Tramadol taken in tiny doses alternates between keeping me wide

> > awake or so drowsy I pass out at work, so its unpredictability

> makes

> > it hard to take and only half way works on pain. Flexril helps a

> > little but if I take it more than 3 times a week it loses

> > effectiveness. Wellbutrin taken in hopes of stopping nerve pain

> > causes seizures and severe eye pain. Relafen is like eating

candy-

> > doesn't work at all. Cannot take anything with tylenol because

of

> > already elevated liver enzymes.

> >

> > So anyone have any suggestions? My dr thought about putting me

on

> > Duragesic patches, but wanted to wait till I tried out Relafen.

> I'm

> > apprehensive to take narcotics because I can't afford to get

sick

> or

> > drowsy at work and can't just stay home in bed. I've read the

> > Duragesic patches can cause vomiting, drowsiness and cause major

> > withdrawl symptoms if you run out. I'm also allergic to

adhesives

> in

> > bandages so not sure my skin could handle it. ( I reacted to

> > hypoallergenic paper tape so bad the dermatologist told me I got

a

> > staph infection from it!) Am I alone in pain and in all these

> > dilemias?

> >

> >

> >

>

[Guest guest]

Hi can anyone share some ideas about pain management? I tried DLPA but

sadly it didnt work for me. Have resorted to Advil but am concerned

about long term use. Just at the moment I'm needing something pretty

much most of the time. thx

[Guest guest]

P'au d'Arco tea is supposed to aleviate pain within 3 days.  You can get it at

www.princetea.com

$25 per pound, not shipping or tax.

________________________________

From: dwntwngrl2 <kcg@...>

Sent: Saturday, October 25, 2008 5:58:09 PM

Subject: [ ] pain management

Hi can anyone share some ideas about pain management? I tried DLPA but

sadly it didnt work for me. Have resorted to Advil but am concerned

about long term use. Just at the moment I'm needing something pretty

much most of the time. thx

[Guest guest]

Amber Aspirin is 100% synthetic. It is the acetylsalicylic acid. The acid is

present in the bark of the white willow and other species IN CONJUNCTION with

other chemicals that moderate the negative (-1) aspects of the acid.

However the potency f willow bark is only 1-5% of that of the aspirin, so you

would need to take a lot of wliiow to equate the 315 mg of the aspirin tablet.

There are extratcs of 15 and 25% Salicin (a cmbination of the active

ingredients) but difficult to get.

You may wan to look into the liquid extracts.

Good luck

From: Stargazer

So aspirin IS synthetic?

~Amber

[Guest guest]

Thanks for the reply . I thought that aspirin was made from white

willow. I guess everything is synthetic now :-(

~Amber

-- Re: [ ] pain management

Amber Aspirin is 100% synthetic. It is the acetylsalicylic acid. The acid is

present in the bark of the white willow and other species IN CONJUNCTION

with other chemicals that moderate the negative (-1) aspects of the acid.

However the potency f willow bark is only 1-5% of that of the aspirin, so

you would need to take a lot of wliiow to equate the 315 mg of the aspirin

tablet.

There are extratcs of 15 and 25% Salicin (a cmbination of the active

ingredients) but difficult to get.

You may wan to look into the liquid extracts.

Good luck

From: Stargazer

So aspirin IS synthetic?

~Amber

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

[Guest guest]

Hi,

I bought this yesterday and plan to start it in a few days -- just upped my ldn

dosage slightly to 4 mg which is apparently the dose for my weight, so I just

want to let that sink in a bit before I do something new.

I have low blood pressure, so assume dlpa will be ok?

Thank you so much for your help!!

Alita

>

> If you do not have high blood pressure you can try 3x500 mg D-Phenylalnine

> on empty stomach.

>

> It keeps the endorphines during the day and helps with pain

>

>

>

> http://www.iherb.com/doctor-s-best-best-d-phenylalanine-500-mg-60-veggie-cap

> s/8607?at=0

>

>

>

> if you decide to buy at iherb you can get 5 dollars off your First order

> with this code ZAH179

>

>

> _____

>

> I am using the Free version of SPAMfighter <http://www.spamfighter.com/len>

> .

> SPAMfighter has removed 1986 of my spam emails to date.

>

> Do you have a slow PC? <http://www.spamfighter.com/SLOW-PCfighter?cid=sigen>

> Try free scan!

>

[Guest guest]

DL-PA and D-Phenylalanine are 2 different products.with low

blood pressure they are ok.

D-Phenylalanine is much better for pain

With low blood pressure you have to check adrenal fatigue

and use celtic salt.

Adrenal

Fatigue: The 21st Century Stress Syndrome