pain management

[Guest guest]

hey angela, i have constant arthritis type pain in hands/feet and

worse when pain migrates around to other joints. i take tylenol 3

when it's really bad and am trying celebrex. every once in awhile i

take a hydrocodone to get big relief. tylenol, apsirin, &

ibuprophen work pretty good but can't handle side effects.

Aleve/naproxen is like taking nothing. I would go to a pain clinic

if you are not getting the relief you need to function. i am

considering doing this if the celebrex doesn't work. cooky

p.s...i sent you an offline re: Vit C.

>

> 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]

There is a product called CetylM ( website is of same name), for horses,

dogs and humans. On the animal front I have heard nothing but wonderfull

things. Soooo ordered some for my ol dog, hasnt gotten here yet and then it

will take about 3 weeks for the levels to be built up. Am hoping to have

the same praise for this that everyone seems to have, poor Belle needs help.

*-) will be ordering some for myself shortly. May be worth looking

into for joint pain.

[Guest guest]

Hi,

My pain in the beginning was so bad, nothing worked, when I got on an

antibiotic that started working for my strain the pain got easier to manage.

Now the flare ups can be bad, but nothing like when I was first ill.

hugs,

Connie, MI

[ ] Pain management

>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?

>

>

>

>

>

>

>

>

> For up to date information about Lyme disease and the known co-infections

> delivered to your email address see:

> Robynns_Lyme_List/

>

>

[Guest guest]

yes, yes, and yes. My main symptoms besides the fatigue. I use pain

drs. for trigger pt shots. ultracet 3 X day, and a muscle relaxer

when needed. I also use a tiny or 1/4 capsule of Lyrica for the

burning pain. I cannot tolerate the full dose and the lower one

helps with the burning.

In , " wtptoo " <wtptoo@y...> wrote:

>

> 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]

Thanks for your reply Lida. Sounds like you have similar types of

pain as myself. The pain all started around 1990 first with severe

foot and knee pain then muscle pain and spasms. I was diagnosed with

fibromyalgia at 23. There was a few times I would get " stuck "

somewhere unable to move. Once at grocery store I was stranded in

the middle of the main aisle for 30 mins because I could not get my

knees to bend. In more recent years I hurt all over, especially in

joints and was diagnosed with arthritis after a foot x-ray proved

it. Then foot doctor suspected gout which no other dr had even

consider and tested positive for it. Little did I know all this plus

the asthma and IBS are all said to be caused by Lyme. The strongest

meds I was given for fibro were salsalate and ketoprofen aside from

the time I had a hand injury at work and thats when they gave me

hydrocodone. I've had the worst time getting anyone to believe I was

in pain till I got the arthritis diagnosis and also migraines.

I am afraid to try neurontin because it can cause seizures in those

prone to them. I have had unexplained seizures as a child and a few

times as an adult. I tested positive for an autoimmune disease

called CREST Syndrome, but have never received any sort of treatment

for it. The rheumatologist refused to treat me!

Can you tell me more about RSD? I have only heard of it a few months

ago when I happened upon an article online. I suspect I could have

it because ever since I broke my leg 3 years ago I have had severe

pain at the site of the break even though it was not a serious

injury. I still have swelling and extreme stabbing and throbbing

pains above the break ever since. Last night it hurt so bad I could

not get to sleep. Humidity seems to make it worse. I cry myself to

sleep sometimes because the pain is so bad. I have heard those in

chronic undertreated pain have something happen to their brain where

the nerves become wired to only feel pain and then nothing will

treat it. I worry that is what has happened to me.

It doesn't help that I am klutzy and keep injuring myself. At the

same time I got pneumonia a couple weeks ago I somehow broke my toe

and have been suffering from the pain of that. I have no clue how or

when I broke it. Sometimes I hurt myself and don't feel it till

later. Now it feels like it is broken in two spots. I have broken my

toes numerous times during my taekwondo years and then my klutzy

years till I know when I've broken it and know there is nothing to

do for it.

The other issue is taking something that doesn't affect me to where

I can't work or drive as I support myself and have no one nearby to

help me. I just started seeing a new dr who seems receptive to

treating the pain. He did try me on something new, it just didn't

work. He suggested the next option is the Duragesic patches, but I

have read some scary things on those. Actually I have been trying to

see this dr for years but he has not been accepting patients for 5

years! He got run out of town by some overzealous MDs that didn't

like him stealing away their patients. He has had success in

treating many RA patients with both narcotics and antibiotics. Even

though Doxycycline for RA is considered the latest in treatment

several drs tried to get him canned. So he moved to another town and

that created an opening where he is finally taking new patients.

Come to find out he has also treated Lyme patients in the past. He

said he would take over my Lyme treatment and pain management after

my LLMD left the area. So I have hope that he will try to help me I

just don't know what to ask for that will help and not cause bad

side effects.

>

> ,

>

> PAIN has been my main sympton since 1989. My heart goes out to

you.

> No, you are not alone. I have very painful contractions,

vasospasm,

> and burning pains, which started in a local place and spread to

all

> parts of my body over the years. One of my early diagnosis was

mild

> RSD and I was treated for that with stellate blocks. I used to

have

> gnawing pains and a lot of muscle twitchings. Over the 16 years

I've

> tried many allopathic meds listing just a few without any

resolution:

> Tylenol, many NSASD's, TENS unit, Volteren, Flexeril, Tegretol,

> Beckolfen, Elavil (couldn't stay on it for more than 2 months. I

also

> tried many alternative and complimentary approaches: Accupuncture,

> moxibustion, Chinese herbs, and homeopathy, merridian stress

> assesment, NAET- (his treats alllergies if any), microcurrent

> therapy. While trying many homeopathic remedies I learned to

listen

> to my body since nothing was masking my painful contractions and

nerv

> pain. Homeopathic remedies did not help me but I learened that my

> pains could completely go away if I avoided the triggers. Air-

> conditioning is lethal for me, cold drafts, cold surfaces and

changes

> of temperature. I am at my best when I am moving, hiking, walking,

> biking in a constant warm temperature. I have lived in a very

> controlled environement since I discovered this. It is hard,and I

> don't always succeed. I have the hardest time driving in the car.

I

> live near Washington, D.C., where air-conditioning is used almost6

> months out of the year in commercial and office bldg. I had to be

on

> Percocet this September and part of October after the acute Lyme

> infection this August. When I went to rule out polymyalgia

rheumatica

> this Octoberthe rheumatologist saud I did not have it, because the

> Doxy wouldn't have knocked down the elevated sed rate. He went

over

> my whole med. history and afdter a month of thinking he

> recommendedneuropathy modulating meds: Neurontin, Gabitril or

> Lyrica...with the caveat given my sensitivity level. Lida

>

>

[Guest guest]

Thanks . I had forgotten about Mobic. I may have to try it

again. Since it is still kinda new maybe the dr will have samples. I

was given Mobic before along with another new muscle relaxer I can't

remember the name of now. I took them both at once for an injury I had

so I don't recall if the Mobic eased the pain as mostly I just remember

the combo made me really groggy.

> >

>

> The only pain killer that works for me is hydrocodne. I have heard it

> makes others sick, but I am glad it works for me. Have you heard of

> neurotin? Many lymies take that for pain also Mobic is good.

>

[Guest guest]

,

I was getting trigger pt shots too for awhile. Are you getting

cortisone in the shots? I was and little did I know at the time that

cortisone and any other steriod makes the Lyme worse. But it explained

how I went downhill fast after I started the injections.

>

> yes, yes, and yes. My main symptoms besides the fatigue. I use pain

> drs. for trigger pt shots. ultracet 3 X day, and a muscle relaxer

> when needed. I also use a tiny or 1/4 capsule of Lyrica for the

> burning pain. I cannot tolerate the full dose and the lower one

> helps with the burning.

>

>

>

[Guest guest]

Hi,

Hydrocodine is my pain med. Not that I would not take something stronger if

it were offered. It helps take the edge off.

My teeth are badly infected and I am having a lot of tooth pain at this moment

and It has been chronic for some time now.

Nothing quite like the pain of a tooth ache multiplied by several teeth you

got yourself one bad pain.

I also have Migraine headaches. I had one two Saturday's ago. I have been

able to know ahead and take medication to stop them because I get the blindness

and the aurora in my vision.

This one snuck up on me. I was doing laundry and going in and out of a dark

apt into bright light so I missed the warning signs.

Boy I could not sit, stand, lie down, watch TV, work on the computer. I was

so sick to my stomach and did not want to throw up because I could not waste my

pain medication.

I'd be hard pressed to say which is worse Late Stage Lyme pain and or a

Migraine. Add on teeth hurting. Boy now we got pain.

Looking at my pile of laundry I'd say that was more like a month ago I was

doing laundry. .

Wondering if spending $200 on new clothes was a smart thing to do.

Millie

wtptoo, my spell check keeps telling me to change that word to tiptoe.

wtptoo <wtptoo@...> wrote:

Thanks . I had forgotten about Mobic. I may have to try it

again. Since it is still kinda new maybe the dr will have samples. I

was given Mobic before along with another new muscle relaxer I can't

remember the name of now. I took them both at once for an injury I had

so I don't recall if the Mobic eased the pain as mostly I just remember

the combo made me really groggy.

[Guest guest]

I know about that paralyzed pain. It was what made me think of Lou Gehrig's

Disease. Back long before I got my Late Stage Lyme diagnosis.

I would just lose the connection to my body. I could not move. My mind would

say OK lets walk. Nothing happening. One time I was in a department store and

just sat down on the floor in the Isle. Looked like a fool I am sure. My

Boyfriend was Embarrassed. He can go fly a kite. So I sat until my body

decided I could walk again.

This disease is real strange.

Lots of pain. Lots of really strange symptoms.

I enjoy the stories. Hope that does not sound strange. It's just that I

share the pain with you. Not like I'm watching your pain. I'm there right

along with you.

Millie

wtptoo <wtptoo@...> wrote:

Thanks for your reply Lida. Sounds like you have similar types of

pain as myself. The pain all started around 1990 first with severe

foot and knee pain then muscle pain and spasms. I was diagnosed with

fibromyalgia at 23. There was a few times I would get " stuck "

somewhere unable to move. Once at grocery store I was stranded in

the middle of the main aisle for 30 mins because I could not get my

knees to bend. In more recent years I hurt all over, especially in

joints and was diagnosed with arthritis after a foot x-ray proved

it. Then foot doctor suspected gout which no other dr had even

consider and tested positive for it. Little did I know all this plus

the asthma and IBS are all said to be caused by Lyme. The strongest

meds I was given for fibro were salsalate and ketoprofen aside from

the time I had a hand injury at work and thats when they gave me

hydrocodone. I've had the worst time getting anyone to believe I was

in pain till I got the arthritis diagnosis and also migraines.

I am afraid to try neurontin because it can cause seizures in those

prone to them. I have had unexplained seizures as a child and a few

times as an adult. I tested positive for an autoimmune disease

called CREST Syndrome, but have never received any sort of treatment

for it. The rheumatologist refused to treat me!

Can you tell me more about RSD? I have only heard of it a few months

ago when I happened upon an article online. I suspect I could have

it because ever since I broke my leg 3 years ago I have had severe

pain at the site of the break even though it was not a serious

injury. I still have swelling and extreme stabbing and throbbing

pains above the break ever since. Last night it hurt so bad I could

not get to sleep. Humidity seems to make it worse. I cry myself to

sleep sometimes because the pain is so bad. I have heard those in

chronic undertreated pain have something happen to their brain where

the nerves become wired to only feel pain and then nothing will

treat it. I worry that is what has happened to me.

It doesn't help that I am klutzy and keep injuring myself. At the

same time I got pneumonia a couple weeks ago I somehow broke my toe

and have been suffering from the pain of that. I have no clue how or

when I broke it. Sometimes I hurt myself and don't feel it till

later. Now it feels like it is broken in two spots. I have broken my

toes numerous times during my taekwondo years and then my klutzy

years till I know when I've broken it and know there is nothing to

do for it.

The other issue is taking something that doesn't affect me to where

I can't work or drive as I support myself and have no one nearby to

help me. I just started seeing a new dr who seems receptive to

treating the pain. He did try me on something new, it just didn't

work. He suggested the next option is the Duragesic patches, but I

have read some scary things on those. Actually I have been trying to

see this dr for years but he has not been accepting patients for 5

years! He got run out of town by some overzealous MDs that didn't

like him stealing away their patients. He has had success in

treating many RA patients with both narcotics and antibiotics. Even

though Doxycycline for RA is considered the latest in treatment

several drs tried to get him canned. So he moved to another town and

that created an opening where he is finally taking new patients.

Come to find out he has also treated Lyme patients in the past. He

said he would take over my Lyme treatment and pain management after

my LLMD left the area. So I have hope that he will try to help me I

just don't know what to ask for that will help and not cause bad

side effects.

[Guest guest]

No steroids, just lidocaine. I have had steroid epidurals for my back

before. Only 3. I never noticed any more lyme symptoms.

In , " wtptoo " <wtptoo@y...> wrote:

>

> ,

>

> I was getting trigger pt shots too for awhile. Are you getting

> cortisone in the shots? I was and little did I know at the time

that

> cortisone and any other steriod makes the Lyme worse. But it

explained

> how I went downhill fast after I started the injections.

>

>

>

>

> >

> > yes, yes, and yes. My main symptoms besides the fatigue. I use

pain

> > drs. for trigger pt shots. ultracet 3 X day, and a muscle relaxer

> > when needed. I also use a tiny or 1/4 capsule of Lyrica for the

> > burning pain. I cannot tolerate the full dose and the lower one

> > helps with the burning.

> >

> >

> >

>

[Guest guest]

The more I read the more confused I get. I have pain. It feels like I am on

fire. I don't have much in the way of pain meds and I have never insisted on

more. But I tolerate an awful lot of pain. I feel in my gut it is definately

Lyme related.

Am I mistaken.

That burning on fire pain.

Millie

<scorpionallure@...> wrote:

No steroids, just lidocaine. I have had steroid epidurals for my back

before. Only 3. I never noticed any more lyme symptoms.

In , " wtptoo " <wtptoo@y...> wrote:

>

> ,

>

> I was getting trigger pt shots too for awhile. Are you getting

> cortisone in the shots? I was and little did I know at the time

that

> cortisone and any other steriod makes the Lyme worse. But it

explained

> how I went downhill fast after I started the injections.

>

>

>

>

> >

> > yes, yes, and yes. My main symptoms besides the fatigue. I use

pain

> > drs. for trigger pt shots. ultracet 3 X day, and a muscle relaxer

> > when needed. I also use a tiny or 1/4 capsule of Lyrica for the

> > burning pain. I cannot tolerate the full dose and the lower one

> > helps with the burning.

[Guest guest]

Well per what the dr. said last night, all my pain is not even fibro.

I take ultracet and a muscle relaxer for spasms.

The best for burning pain is Lyrica. It is new and improved Pfizer's

neurontin. I would ask a dr. about either of them. They can cause

dizziness and confusion. I cut my dose down on the Lyrica against

what the dr. said and it works. I only take it for the burning leg

and foot pain or all over burning when I am in a bad flare.

In , Millie <millie_miller@s...>

wrote:

>

> The more I read the more confused I get. I have pain. It feels

like I am on fire. I don't have much in the way of pain meds and I

have never insisted on more. But I tolerate an awful lot of pain.

I feel in my gut it is definately Lyme related.

>

> Am I mistaken.

>

> That burning on fire pain.

>

> Millie

>

> <scorpionallure@y...> wrote:

> No steroids, just lidocaine. I have had steroid epidurals for my

back

> before. Only 3. I never noticed any more lyme symptoms.

>

> In , " wtptoo " <wtptoo@y...> wrote:

> >

> > ,

> >

> > I was getting trigger pt shots too for awhile. Are you getting

> > cortisone in the shots? I was and little did I know at the time

> that

> > cortisone and any other steriod makes the Lyme worse. But it

> explained

> > how I went downhill fast after I started the injections.

> >

> >

> >

> >

> > >

> > > yes, yes, and yes. My main symptoms besides the fatigue. I use

> pain

> > > drs. for trigger pt shots. ultracet 3 X day, and a muscle

relaxer

> > > when needed. I also use a tiny or 1/4 capsule of Lyrica for

the

> > > burning pain. I cannot tolerate the full dose and the lower

one

> > > helps with the burning.

>

[Guest guest]

Millie,

I used to get a lot of migraines. I found that stopping diet sodas and

anything else with aspartame (Nutrasweet) in it lessened the number of

headaches. If you consume aspartame I would highly suggest you stop it

for a couple weeks and see how you feel. Everyone I have talked to that

has stopped for 2 wks notes an improvement in symptoms from headaches,

brain fog, dizziness and general malaise.

>

> Hi,

>

>

> I also have Migraine headaches. I had one two Saturday's ago. I

have been able to know ahead and take medication to stop them because I

get the blindness and the aurora in my vision.

>

>

[Guest guest]

Millie,

I've had some strange things happen with the temporary paralysis

thing or whatever it is. Seems like I read someone calling it

apraxia or something like that? A weird thing happened right before

my Lyme treatment started I suddenly couldn't get my right leg to

respond. I was walking down the hallway at work and it was as if my

leg could not understand the signals from my brain. Sorta like a

short circuit if I was an electrical device I guess. I would be

thinking " come on now just walk " and my leg didn't " know how to " . So

I spent that day dragging my right leg around because the left leg

was having to do all the work. This was like two days before I

started antibiotics and then 2nd or 3rd week into the first month of

antibiotics this happened again. Then it happened several times

periodically during my 2nd month of antibiotics. This was different

than when my knee wouldn't bend at the store a decade earlier. The

knee thing was like the joint freezing up and not budging. This

recent problem was more like muscles not being able to interpret

signals from the brain. Its the weirdest thing to have happen and

was terrifying and embarrassing at the same time as this happened at

work mostly for some reason. But then I work a lot so I am just

there more than I am at home or anywhere else!

>

> I know about that paralyzed pain. It was what made me think of

Lou Gehrig's Disease. Back long before I got my Late Stage Lyme

diagnosis.

>

> I would just lose the connection to my body. I could not move.

My mind would say OK lets walk. Nothing happening. One time I was

in a department store and just sat down on the floor in the Isle.

Looked like a fool I am sure. My Boyfriend was Embarrassed. He can

go fly a kite. So I sat until my body decided I could walk again.

>

> This disease is real strange.

>

> Lots of pain. Lots of really strange symptoms.

>

> I enjoy the stories. Hope that does not sound strange. It's

just that I share the pain with you. Not like I'm watching your

pain. I'm there right along with you.

>

> Millie

>

[Guest guest]

,

Saddened to hear your story. RSD (Reflex Sympathetic Distrophy) is a

mulfunction of the sympathetic nervous system that is overfiring,

hightened. Injury and/or stress can set it off. The body reacts with

flight and fight respose, which should resolve after a while but if

it deos not you end up with RSD. It isn't anything you want, because

there is no tratment for it that works. I've had 11 stellates blocks

but did not get any relief. I ended up going to Mayo Clinic in

Rochester to rule it out. I was told I probably had only a very mild

case of ot or not at all. The neurologist did not really figure out

what was the underlying cause of my nerve pains and vasospasms and

spasms. I was told most of my problems were do to sympatheticly

mediated.I was tested for Lyme with a serology test there( 1992)with

negative result. Test was very different from todays. Drugs were

recommended but I was done with allopathic meds, which kept making me

worse. I don't know what to say, I truly hope that is not what you

have. A good neurologist would be able to rule it in or out. Do you

get any relief from dry heat? It really works for me. If I did not

sleep under a goose down with 78 degrees house temp. I wouldn't be

able to get out of the bed I would be so spastic. Any draft, air-

condt. or cold surface will exacerbate my pains. Peroccet was the

only med that helped me when I had severe exacerbation after the

acute Lyme infection this August. I still had the stiffness but felt

no pain till it wore off. I feel like my last 16 years have been a

labyrinth that I don't seem to be able to find a way out off. Yes, I

was told brain has a memory and something that is called P is what

maintains the pattern of pain. Are you a nurse? Hugs-- Lida

> >

> > ,

> >

> > PAIN has been my main sympton since 1989. My heart goes out to

> you.

> > No, you are not alone. I have very painful contractions,

> vasospasm,

> > and burning pains, which started in a local place and spread to

> all

> > parts of my body over the years. One of my early diagnosis was

> mild

> > RSD and I was treated for that with stellate blocks. I used to

> have

> > gnawing pains and a lot of muscle twitchings. Over the 16 years

> I've

> > tried many allopathic meds listing just a few without any

> resolution:

> > Tylenol, many NSASD's, TENS unit, Volteren, Flexeril, Tegretol,

> > Beckolfen, Elavil (couldn't stay on it for more than 2 months. I

> also

> > tried many alternative and complimentary approaches:

Accupuncture,

> > moxibustion, Chinese herbs, and homeopathy, merridian stress

> > assesment, NAET- (his treats alllergies if any), microcurrent

> > therapy. While trying many homeopathic remedies I learned to

> listen

> > to my body since nothing was masking my painful contractions and

> nerv

> > pain. Homeopathic remedies did not help me but I learened that my

> > pains could completely go away if I avoided the triggers. Air-

> > conditioning is lethal for me, cold drafts, cold surfaces and

> changes

> > of temperature. I am at my best when I am moving, hiking,

walking,

> > biking in a constant warm temperature. I have lived in a very

> > controlled environement since I discovered this. It is hard,and I

> > don't always succeed. I have the hardest time driving in the car.

> I

> > live near Washington, D.C., where air-conditioning is used

almost6

> > months out of the year in commercial and office bldg. I had to be

> on

> > Percocet this September and part of October after the acute Lyme

> > infection this August. When I went to rule out polymyalgia

> rheumatica

> > this Octoberthe rheumatologist saud I did not have it, because

the

> > Doxy wouldn't have knocked down the elevated sed rate. He went

> over

> > my whole med. history and afdter a month of thinking he

> > recommendedneuropathy modulating meds: Neurontin, Gabitril or

> > Lyrica...with the caveat given my sensitivity level. Lida

> >

> >

>

[Guest guest]

Stress is my big pain in the head.

I finally heard back from the DA's office about the things I have been

stressing about.

I see a light at the end of the tunnel.

Plus I got out my alarm clock so I can remember to take my meds before they

wear off and I force myself to go a couple more hours without meds.

Thanks for the Idea about non-calorie sweeteners. I've been reading the

posts. I really know my problem is major stress.

I don't like to contaminate my body with artificial anything if I can avoid

it. As I said things are looking better.

wtptoo <wtptoo@...> wrote:

Millie,

I used to get a lot of migraines. I found that stopping diet sodas and

anything else with aspartame (Nutrasweet) in it lessened the number of

headaches. If you consume aspartame I would highly suggest you stop it

for a couple weeks and see how you feel. Everyone I have talked to that

has stopped for 2 wks notes an improvement in symptoms from headaches,

brain fog, dizziness and general malaise.

[Guest guest]

How do you work and read all these E-mails. I feel like I have a full time job

just reading them. I try not to answer because they always turn into a book.

Yeah that not getting the signal to the muscle. Definately Lyme. Very

strange. When I was bed ridden and undiagnosed I would reach out for the edge

of the bed and pull myself over probably why my upper body stayed strong.

Are you at work when you are doing the E-mail. just curious don't care and it

isn't any of my business.

Millie

wtptoo <wtptoo@...> wrote:

Millie,

I've had some strange things happen with the temporary paralysis

thing or whatever it is. Seems like I read someone calling it

apraxia or something like that? A weird thing happened right before

my Lyme treatment started I suddenly couldn't get my right leg to

respond. I was walking down the hallway at work and it was as if my

leg could not understand the signals from my brain. Sorta like a

short circuit if I was an electrical device I guess. I would be

thinking " come on now just walk " and my leg didn't " know how to " . So

I spent that day dragging my right leg around because the left leg

was having to do all the work. This was like two days before I

started antibiotics and then 2nd or 3rd week into the first month of

antibiotics this happened again. Then it happened several times

periodically during my 2nd month of antibiotics. This was different

than when my knee wouldn't bend at the store a decade earlier. The

knee thing was like the joint freezing up and not budging. This

recent problem was more like muscles not being able to interpret

signals from the brain. Its the weirdest thing to have happen and

was terrifying and embarrassing at the same time as this happened at

work mostly for some reason. But then I work a lot so I am just

there more than I am at home or anywhere else!

[Guest guest]

Hi, Hoolihanma, if you wouldn't min d sharing, what new york doctors did you

see and did you like them? thanks, marsha

[Guest guest]

First Dr. I had was in Sayre Penn. he is the man who did more damage to me,

from the surgery.

I see a Dr. Bajwa in City New York now. He is one of the best on

the East coast.

I have seen Dr. Star in Syracuse also, so told me to go back to Dr. Bajwa.

I saw a few more, but they were ran out of New York State for being so bad.

Check them out, know their history, and don't trust, " I'm new here doctors. "

If a Dr has moved to a new area, it is usually for a bad reason, for he has

done to many bad jobs to stay in one area long.

Dr. Bajwa has been with me since 1988. He has done surgery on my mother,

brother-in-law, from what I told them about him. He is still working with me.

I'm facing more surgery also, and Dr. Bajwa has told me if I do have anymore

surgery I will end up in a wheel chair, but if something isn't done soon, I

will be there anyway.

Oh, isn't life fun.

Well your not alone, so hang in there, just check the doctor out before

seeing him, ask questions from the other patients and staff. They don't talk,

then don't trust him/her.

Take care, Hoolihanma

[Guest guest]

I do think that different pain management doctors have their own

preferred way of treating pain.

I originally asked my PCP to refer me for pain management because Dr

Sachs, in Texas, had wanted me to have an SI joint injection before

I returned to see him. The injection would provide valuable

diagnostic information about the source of my pain. The doctor he

referred me to told me up front that my out of pocket expense would

be about $3000! So, I asked my PCP to find me somebody local who

could do it.

The pain management doctor he sent me to had a nice brochure and

talked about how he specialized in treating people with back

problems. Even though my referral was for SI joint injections, he

just wanted to talk about implanting an electrical stimulator

device. At least he did send me for an MRI.

When I went back for my follow-up appointment, he had so many folks

in the waiting room that there was nowhere to sit! How crazy is

that? Listening to the people talk, everybody had the electrical

device, and most of them were having problems. When they finally

called me back to a room, I picked up my envelope of MRI films and

left.

I did go back a few weeks later, because I was curious to hear his

opinion of my MRI. He said he couldn't help me because I had a long

fusion. DUH!! I told him that on my first visit!

I told the doctor that I work full time as a teacher, and that I was

going to grad school full-time and therefore I could not afford to

take any pills that impaired my brain functioning or made me

sleepy. He gave me some prescriptions, and every single one of them

had warning labels -- may cause drowsiness.

That is when I called the local adult scoliosis specialist and asked

who they would recommend for SI joint injections. I am so glad I

did, because I was mostly pain-free for about a year (until I

cancelled my last appointment because I owe a whole lot of money).

So, I guess the point I am trying to make is that you have the right

to decide a doctor is either crazy or not a good listener, or not

the doctor for you for whatever reason. You hire the doctor and you

can certainly fire them and try to find a better one.

>

> I have a question about pain management docs. Are there some who

only

> treat with injections?

> Is this a standard practice? When I was referred, all the

paperwork I

> was sent about the care they give, gave me the impression there

were

> different treatments available, which were injections and

different

> meds. When I had my appt., his assistant told me point blank he

> treated with injections only. While we talked and I asked about

the

> pain meds I am taking, he told me he would send a note to my PCP

> saying it was ok for him to continue giving the meds he was.

>

> I was finally able last Friday to get in to see my PCP and he came

> unglued when I told him this. He was so mad he made sure he had

the

> pain mgmt. docs name so he could turn him into Tricare, that he

was

> only doing injections because that is where the money is. He also

> said if I was his wife he would be more than angry I had to be put

in

> the middle like that. Was I surprised!

>

> The pain mgmt. doc told me my problems were muscular, thus the

> trigger point injections. But in the next breath he said he wanted

to

> do the facet joint injections. Lets see, the paper I was given

> says " Medial Branch Neurotomy " . I have already delayed making the

> appt. for this, and am about 90% sure I am not making that appt.

It

> seems so invasive for one thing, and now I am also wondering, is

it

> necessary, or another expensive proceedure. As for me, I am doing

ok,

> my pain problem these days is my neck which is not the area he

wants

> to stick the needles.

> Anybody ever had anything at all like this happen?

> Lordy I am confused...

>

> (hope I made that clear, this is all just spinning in my

> head)

>

[Guest guest]

Hello! I think that pain management physicians use a variety of techniques, but injections seem to be a big part of their treatment repertoire. They seem to do a variety of types of injections: trigger points, epidurals, facet joints, medial branch blocks. They also do radiofrequency ablations. My experience is that they prescribe medications; however, on one or two occasions, they seemed to want me to get particular ones from my PCP. In fact, I even had the same experience with an orthopedic surgeon a while back. He claimed that it was because he did not see me all that often.

I am not clear as to the cause of your PCP's anger with the pain management doctor. Was it because the latter was passing the buck in terms of prescribing medications?

In a message dated 5/24/06 1:46:10 AM, mrstrem@... writes:

I have a question about pain management docs. Are there some who only

treat with injections?

Is this a standard practice? When I was referred, all the paperwork I

was sent about the care they give, gave me the impression there were

different treatments available, which were injections and different

meds. When I had my appt., his assistant told me point blank he

treated with injections only. While we talked and I asked about the

pain meds I am taking, he told me he would send a note to my PCP

saying it was ok for him to continue giving the meds he was.

I was finally able last Friday to get in to see my PCP and he came

unglued when I told him this. He was so mad he made sure he had the

pain mgmt. docs name so he could turn him into Tricare, that he was

only doing injections because that is where the money is. He also

said if I was his wife he would be more than angry I had to be put in

the middle like that. Was I surprised!

The pain mgmt. doc told me my problems were muscular, thus the

trigger point injections. But in the next breath he said he wanted to

do the facet joint injections. Lets see, the paper I was given

says "Medial Branch Neurotomy".  I have already delayed making the

appt. for this, and am about 90% sure I am not making that appt. It

seems so invasive for one thing, and now I am also wondering, is it

necessary, or another expensive proceedure. As for me, I am doing ok,

my pain problem these days is my neck which is not the area he wants

to stick the needles.

Anybody ever had anything at all like this happen?

Lordy I am confused...

  (hope I made that clear, this is all just spinning in my

head)

[Guest guest]

,

I went to a pain management doc for three years. i had facet joint

injections in my back to relieve hip pain. It took many injections

to figure out why he was injecting one spot to relieve pain in

another spot. Any way, it worked for a while then they wore out

their welcome.

>

> I have a question about pain management docs. Are there some who

only

> treat with injections?

> Is this a standard practice? When I was referred, all the

paperwork I

> was sent about the care they give, gave me the impression there

were

> different treatments available, which were injections and

different

> meds. When I had my appt., his assistant told me point blank he

> treated with injections only. While we talked and I asked about

the

> pain meds I am taking, he told me he would send a note to my PCP

> saying it was ok for him to continue giving the meds he was.

>

> I was finally able last Friday to get in to see my PCP and he came

> unglued when I told him this. He was so mad he made sure he had

the

> pain mgmt. docs name so he could turn him into Tricare, that he

was

> only doing injections because that is where the money is. He also

> said if I was his wife he would be more than angry I had to be put

in

> the middle like that. Was I surprised!

>

> The pain mgmt. doc told me my problems were muscular, thus the

> trigger point injections. But in the next breath he said he wanted

to

> do the facet joint injections. Lets see, the paper I was given

> says " Medial Branch Neurotomy " . I have already delayed making the

> appt. for this, and am about 90% sure I am not making that appt.

It

> seems so invasive for one thing, and now I am also wondering, is

it

> necessary, or another expensive proceedure. As for me, I am doing

ok,

> my pain problem these days is my neck which is not the area he

wants

> to stick the needles.

> Anybody ever had anything at all like this happen?

> Lordy I am confused...

>

> (hope I made that clear, this is all just spinning in my

> head)

>

[Guest guest]

I forgot to mention that the doctor I am seeing now seems to

specialize in injections. His office is in spine hospital, and he

seems to have his own little surgical suite as an office.

>

> I do think that different pain management doctors have their own

> preferred way of treating pain.

[Guest guest]

Hi,

Thanks for the info! I have gotten some great responses which has

helped immensely...Thank you EVERYONE!

As for the anger directed at the pain mgmt doc, I think it was

because he expected the PMD to handle all aspects of the pain

management which was to include prescriptions. Him only doing the

injections was for the $$. Also, my PCP told me " You are out of my

range of cababilities " ...maybe he was hoping not to see me for this

problem?! The way it is sounding, the area I am in, Tricare only has

1 pain management doc they refer us to.

I did find it odd, when I went for the appt. the PMD did not look at

any of the 2 ct scans/results or the xrays. In fact he just handed

the discs with above mentioned right back to me! Had the papers

copied and said lets get the approval for the facet joint injections

before he read them. Think that threw me off....

Anyways...

again, thanks

>

> Hello! I think that pain management physicians use a variety of

techniques,

> but injections seem to be a big part of their treatment

repertoire. They

> seem to do a variety of types of injections: trigger points,

epidurals, facet

> joints, medial branch blocks. They also do radiofrequency

ablations. My

> experience is that they prescribe medications; however, on one or

two occasions,

> they seemed to want me to get particular ones from my PCP. In

fact, I even

> had the same experience with an orthopedic surgeon a while back.

He claimed

> that it was because he did not see me all that often.

>

> I am not clear as to the cause of your PCP's anger with the pain

management

> doctor. Was it because the latter was passing the buck in terms

of

> prescribing medications?

>

> In a message dated 5/24/06 1:46:10 AM, mrstrem@... writes:

>

>

> > I have a question about pain management docs. Are there some who

only

> > treat with injections?

> > Is this a standard practice? When I was referred, all the

paperwork I

> > was sent about the care they give, gave me the impression there

were

> > different treatments available, which were injections and

different

> > meds. When I had my appt., his assistant told me point blank he

> > treated with injections only. While we talked and I asked about

the

> > pain meds I am taking, he told me he would send a note to my PCP

> > saying it was ok for him to continue giving the meds he was.

> >

> > I was finally able last Friday to get in to see my PCP and he came

> > unglued when I told him this. He was so mad he made sure he had

the

> > pain mgmt. docs name so he could turn him into Tricare, that he

was

> > only doing injections because that is where the money is. He also

> > said if I was his wife he would be more than angry I had to be

put in

> > the middle like that. Was I surprised!

> >

> > The pain mgmt. doc told me my problems were muscular, thus the

> > trigger point injections. But in the next breath he said he

wanted to

> > do the facet joint injections. Lets see, the paper I was given

> > says " Medial Branch Neurotomy " .  I have already delayed making the

> > appt. for this, and am about 90% sure I am not making that appt.

It

> > seems so invasive for one thing, and now I am also wondering, is

it

> > necessary, or another expensive proceedure. As for me, I am doing

ok,

> > my pain problem these days is my neck which is not the area he

wants

> > to stick the needles.

> > Anybody ever had anything at all like this happen?

> > Lordy I am confused...

> >

> >   (hope I made that clear, this is all just spinning in my

> > head)

> >

> >

> >

>

[Guest guest]

If you're going to have Facet Joint injections , I hope you

have better luck with them than I did. I had mine a year ago

(May '05) and I didn't see any relief from pain until about a month

later. Then on either this forum or the other one a nurse said that

typically a person gets relief from pain in about 2 weeks or so. I

think that stress was what was making my pain worse. So, I guess that

they were a waste of money (my ins. money) for me. They cost

$5,000.!!! I really didn't want to waste any more of my insurance's

money on something that was questionable. That's why I figured I

better look into the " big guns " like Dr. Hu or Berven. They are the

only ones that seem to have any answers from what I can see. I guess

I'll find out in July!!

Some days are good, and some are not so good. Today I woke up in more

pain than I've had for several days. Don't know why... I do know that

I generally feel better in warm/hot weather rather than cold/moist

weather. Right now I need to get this e-mail finished and then head

toward bed. By the end of the day I hunch over quite a bit more than

I do in the morning. I have to sit kinda slouchy so my neck doesn't

hurt too much from kinking it back so far to see. Oh, the joys of

flatback!!!!

Carol V.

> >

> > Hello! I think that pain management physicians use a variety of

> techniques,

> > but injections seem to be a big part of their treatment

> repertoire. They

> > seem to do a variety of types of injections: trigger points,

> epidurals, facet

> > joints, medial branch blocks. They also do radiofrequency

> ablations. My

> > experience is that they prescribe medications; however, on one or

> two occasions,

> > they seemed to want me to get particular ones from my PCP. In

> fact, I even

> > had the same experience with an orthopedic surgeon a while

back.

> He claimed

> > that it was because he did not see me all that often.

> >

> > I am not clear as to the cause of your PCP's anger with the pain

> management

> > doctor. Was it because the latter was passing the buck in terms

> of

> > prescribing medications?

> >

> > In a message dated 5/24/06 1:46:10 AM, mrstrem@ writes:

> >

> >

> > > I have a question about pain management docs. Are there some

who

> only

> > > treat with injections?

> > > Is this a standard practice? When I was referred, all the

> paperwork I

> > > was sent about the care they give, gave me the impression there

> were

> > > different treatments available, which were injections and

> different

> > > meds. When I had my appt., his assistant told me point blank he

> > > treated with injections only. While we talked and I asked about

> the

> > > pain meds I am taking, he told me he would send a note to my PCP

> > > saying it was ok for him to continue giving the meds he was.

> > >

> > > I was finally able last Friday to get in to see my PCP and he

came

> > > unglued when I told him this. He was so mad he made sure he had

> the

> > > pain mgmt. docs name so he could turn him into Tricare, that he

> was

> > > only doing injections because that is where the money is. He

also

> > > said if I was his wife he would be more than angry I had to be

> put in

> > > the middle like that. Was I surprised!

> > >

> > > The pain mgmt. doc told me my problems were muscular, thus the

> > > trigger point injections. But in the next breath he said he

> wanted to

> > > do the facet joint injections. Lets see, the paper I was given

> > > says " Medial Branch Neurotomy " .  I have already delayed making

the

> > > appt. for this, and am about 90% sure I am not making that

appt.

> It

> > > seems so invasive for one thing, and now I am also wondering,

is

> it

> > > necessary, or another expensive proceedure. As for me, I am

doing

> ok,

> > > my pain problem these days is my neck which is not the area he

> wants

> > > to stick the needles.

> > > Anybody ever had anything at all like this happen?

> > > Lordy I am confused...

> > >

> > >   (hope I made that clear, this is all just spinning in

my

> > > head)

> > >

> > >

> > >

> >

>