Re: Pain Tolerance Levels and Medications

November 11, 1999

In a message dated 11/11/99 10:38:16 AM Eastern Standard Time,

ldarwent@... writes:

<< Greetings: One of our members Tracey has asked about pain tolerance and

medications, hopefully you will find answers here.

>>

Thanks, , for those links.

I have recently moved to NC and started in with appts with new doctors. One

who was touted as a FMS/CFS specialist I saw yesterday for the second time to

complete the initial evaluation. He tells me I do not have FMS/CFS, but MPS

with some myalgia. His goal is to get me completely off pain medications of

all types, including OTCs. He wants me to see a pscyh doc; my new internist

said I didn't need one. I have already begun titrating meds down as I know

how to do it from discussions with my former docs. The new physical medicine

and rehab specialist wants me to get depakote from the psych doc. I have

tried that before and there " ain't NO way " I'll try that again.

Guess I'm just a little freaked out about this. And, my next appt with the

new internist is for lab work on 12/17. Don't think I want to wait that

long. Think I'll just call the internist's office and request a sooner appt

for lab work and an ASAP appt with doc.

I certainly would like to cut down on my medications - all of them - as much

as possible to the point of not having to take some any more. But with the

length of time and level of pain I have had, I don't think it's possible to

completely do without all meds.

Sorry for the dissertation; this just happened yesterday and I guess I just

had to get it out.

{{{and pain-free wishes}}}

Carol

~~~â€¢â€¢â€¢â€¢â€¢~~~

" In the little things of life, follow your mind; in the big things of life,

follow your heart. " (author unknown)

~~~â€¢â€¢â€¢â€¢â€¢~~~

STRETCH your cash. Trade what you have for what you want. PLUS, earn

referral fees on transactions. http://www.traderewards.com/i.asp?ID=100031

November 11, 1999

In a message dated 11/11/99 4:55:36 PM Eastern Standard Time,

kturbin@... writes:

<< I am pretty certain that you know yourself. I know that you have

been a powerful advocate for others. That does give you an edge, but in

managing our own services, we are just as vulnerable as anybody else. >>

Ken:

As always, a wise response to questions, " dissertations " posed by any of us.

Thank you.

{{{and pain-free wishes}}}

Carol

~~~â€¢â€¢â€¢â€¢â€¢~~~

" In the little things of life, follow your mind; in the big things of life,

follow your heart. " (author unknown)

~~~â€¢â€¢â€¢â€¢â€¢~~~

STRETCH your cash. Trade what you have for what you want. PLUS, earn

referral fees on transactions. http://www.traderewards.com/i.asp?ID=100031

November 11, 1999

I can completely understand -- In November of 1996, my husband was

transferred to Greensboro, NC, we moved from Lexington, Kentucky, and I was

hopeful that with all the hospitals, universities, etc. there I would really

be able to connect with a good doc and get some help. I was seeing Dr.

Faller, a pain management doc, at Pain Management Associates in

Winston-Salem, and she was a great doc, concerned with treating pain causes,

and managing pain level for my wellbeing. We were moved back to Lexington,

Kentucky in September of 1997, and the search began again. I am now seeing a

doc at St. ph Hospital in Lexington, and she's been really good. I go in

tomorrow for test facet injections of T2-T8 to see if nerves are affected and

if burning them would help pain level. We tried this before on T-4,5,6 but I

couldn't tell if it really helped because the pain was still surrounding that

area, so we're going for all the marbles this time.

I saw psychologist yesterday who asked me if I wanted to completely

discontinue medications and he was extremely shocked when I said yes, but I

don't like having my life controlled by medications and pain. He said I've

been on them for so long that they more than likely aren't helping much with

the pain, and the side effects are worse than dealing with pain without meds.

Fern Lehmann posted some letters a few weeks ago, if you can find her post

and read these letters, they may help you with your dealings with new docs.

YOU are the patient, they are supposed to HELP you, so look for these letters

and do your best to make sure they care for you to the best of their

abilities. Good Luck!!!!

Pain-free thoughts!!

Tracey (KY)

November 11, 1999

At 01:05 PM 11/11/99 -0500, MsVVarrior@... wisely said:

>I certainly would like to cut down on my medications - all of them - as much

>as possible to the point of not having to take some any more. But with the

>length of time and level of pain I have had, I don't think it's possible to

>completely do without all meds.

Hi Carol,

I am pretty certain that you know yourself. I know that you have

been a powerful advocate for others. That does give you an edge, but in

managing our own services, we are just as vulnerable as anybody else.

The thought of reducing meds is a nice idea, but may be

inappropriate for a person with chronic problems that do not go away when

the meds do.

I am sure you will think it out & stick to your guns. Change like

you have been experiencing can have a profound effect on anyone, but you

will think this out clearly anyway. Just be certain you make your treatment

people think it out thoroughly too.

Ken

November 14, 1999

Carol,

Sorry my response is late, it has been crazy around here. That is another

story, however, and I will catch you up on that later.

I read your post about the new doctor. I am sorry, but he is wrong. It is

rare to have MPS without FMS and even so MPS still causes severe pain.

Actually I believe that the MPS can cause more pain than FMS.

Get yourself back to the internist and tell him you don't like the FMS

specialist and request to see someone else who will listen to you. You know

your body and what works for you more than some doctor that has seen you

once or twice and has probably not even read your records.

Gentle hugs,

Fern

November 19, 1999

In a message dated 11/14/99 11:12:33 PM Eastern Standard Time,

FERNHLEHMANN@... writes:

<< Get yourself back to the internist and tell him you don't like the FMS

specialist and request to see someone else who will listen to you. You know

your body and what works for you more than some doctor that has seen you

once or twice and has probably not even read your records. >>

Fern:

Sorry to be so late answering. I have a lab appt with internist on 11/29 and

appt on 12/6. The doc who said I didn't have FMS actually spent 3 hours on

the initial visit with me and read all my records. He did frighten me a

little. Told me he wanted me to see a psych doc [my internist said I didn't

need to] and that he wanted me off all pain meds within a year. I had talked

to my internist and told him what I wanted to do about that; and told the

specialist the same thing - he, of course, didn't buy it. He did give me

some very gentle exercises to do, agreed that I needed to get back with a

chiropractor, as well as a massage therapist [which I had been doing before I

moved]. Drats, it's the pits finding all new docs.

Anyway, I'll let you know what internist says.

Thanks for your information. I really appreciate it.

{{{and pain-free wishes}}}

Carol

~~~â€¢â€¢â€¢â€¢â€¢~~~

" In the little things of life, follow your mind; in the big things of life,

follow your heart. " (author unknown)

~~~â€¢â€¢â€¢â€¢â€¢~~~

STRETCH your cash. Trade what you have for what you want. PLUS, earn

referral fees on transactions. http://www.traderewards.com/i.asp?ID=100031

November 23, 1999

Carol wrote: He did frighten me a

> little. Told me he wanted me to see a psych doc [my internist said I

didn't

> need to] and that he wanted me off all pain meds within a year

Depending upon what causes your pain, getting off of all pain medications in

one year may or may not be realistic. Ken Turbin has reminded us several

times that chronic pain goes hand-in-hand with most chronic diseases or

permanent injuries.

Pain medications do not cure my diseases, but they do help me live a better

quality of life. Since my disease causes inflammation of tendons at the

insertion point into joints I will always have these auto-immune problems as

there is no cure. Pain will be a part of my life until the day I die.

After going for far too many years without adequate pain medications,

beginning them this past August has been like a miracle for me.

Seeing a psychiatrist and taking anti-depressants are always part of a good

treatment plan. Some anti-depressants actually increase the effectiveness

of pain medications meaning that you may be able to take less pain

medication to achieve pain control. I'm currently seeing a psychiatrist and

have done so many times in the past, along with counseling.

The idea though that pain is a result of psychological problems is not

always true. Coping with a chronic disease and the pain it brings do cause

depression. Often prescription pain medications can make a difference in

your emotional health. Too many medical professionals do not understand the

treatment of chronic pain. Our problems are not temporary and cannot be

treated like a broken leg that will soon heal.

Ray in Virginia

November 24, 1999

I'm new to this list, and am very glad to be here.

I haven't seen many postings yet, so I haven't really been able to get a feel

for the list yet, but I'll dive on in - that's just my personality!

My name is , but everyone calls me so please do.

I'm a 29 year old Californian living at present in Norway, Europe. I'm married,

but no children. We have a small Birman cattery, and if anyone is interested,

our cattery pages are

here: http://www.hayton.no/apelia (there, that was today's little advertisment

:-))

I have chronic pain in the right side of my head, neck, and arm due to Thoracic

Outlet Syndrom caused by an extra cervical rib which has been pinching all of

the nerves to my right

arm. I had surgery to extract the rib about 2 years ago, but the pain is just as

bad now - even worse at times. I go to pain treatment, and they think that the

surgeon didn't do the

whole job, and that the muscles on the right side of my neck (scalene muscles)

are too tight or too short, so that's as far as they have come now, and we're

trying to find out what

can be done. We're hoping that someone will have some answeres, but I may have

to be sent out of the country.

There are so many " ifs " , and I'm trying to hold things at the back of my mind

right now while we wait for results. With all this comes horrible sleep

problems, constipation, and

deep dark depressions, as I'm sure everyone with pain knows about!

Right now I'm out on disability, but work otherwise with computers, especially

with Internet and computer graphics.

Anyways, that was just a short one on me...probably lot's more to come ;-||

The pain and other symptoms is getting worse - I used to have at least 1-3 hours

after getting up where I was more or less pain free or with very little pain,

but now it's there

even before I get up, so I feel like there's no time now where I can gather

strength.

I hope to be a part of a pain management course for three weeks in January.

There are so many sides or chronic pain that aren't treated by conventional

treatment.

So here I am, and I hope I will be able to contribute to the support on this

list!

Hugs to you all!

Chris

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November 24, 1999

Welcome to the group. You mentioned cervical outlet syndrome as your

diagnosis. Have you ever been evaluated for fibromyalgia or myofascial pain

syndrome? Both of these conditions can cause the type of symptoms that you

describe. I was once told that I have cervical outlet syndrome too, but

they don't do surgery in the states for that as far as I know. At least my

doctor doesn't do surgery for it. I was later diagnosed with both

fibromyalgia and myofascial pain syndrome and no one has mentioned cervical

outlet syndrome since.

Gentle hugs,

Fern

November 25, 1999

At 11:18 PM 11/23/99 -0500, Ray in Virginia wisely said:

>

>Carol wrote: He did frighten me a

> > little. Told me he wanted me to see a psych doc [my internist said I

>didn't

> > need to] and that he wanted me off all pain meds within a year

Seems like we're having a server problem. I did not get Carol's

original message, but get the general flavor. There can be some good

reasons to see a psychiatrist. They can write Rx's for some control drugs

sometimes more easily than other docs. So if one needs valium (I was having

it partly for muscle relaxant properties), the primary care doc may feel

more comfortable with the psych writing it, & they both get paid. At this

point, I take a rather dim view of the old claims that elavil ( & family)

will increase the effect of pain meds, and the curious notion that when

getting both, your pain meds can be cut. Elavil side-effects did at least

as much harm to my life as chronic pain.

Soooo, Carol, what I think we have here is the nasty little

problem of you having *chronic* pain & your doc getting confused about the

chronic part & wanting to taper you off all meds so you will be cured. I

made a formal complaint about the jackass that did this one on me about 6

months ago & got a doc with some background who understands *chronic*, but

also good treatment.

Ken

November 25, 1999

At 12:06 PM 11/24/99 +0100, wisely said:

>and that the muscles on the right side of my neck (scalene muscles) are

>too tight or too short, so that's as far as they have come now, and we're

>trying to find out what

>can be done. We're hoping that someone will have some answeres, but I may

>have to be sent out of the country.

Hi chris,

Welcome to our sorry lot! Does sound like you have a problem where

something is doing a dance on some cervical nerves. Could be something that

was not alleviated by your surgery, but also could be that the body tried

to compensate for the anomaly, & once it was removed (or changed) that

*then* put your body out of whack another way.

Since you are already considering traveling for help, suggest your

docs inquire at Neurological Institute, Colombia Presbyterian hospital, New

York City. When I was there, Dr. Brisman was chief of Neurosurgery

(my doctor). The department of neurology there probably also should be

involved (they have the ability to work together). There are not a large

number of places that get this sophisticated.

Due to what I see as the complexity of your problem, I don't think

blame really fits the picture. Maybe the source(s) of your problem were

just not sufficiently understood.

For those on the list who do not know what a cattery is, they

should certainly visit your website. I am a Rehabilitation Counselor by

training, have been director of rehabilitation at some major hospitals, but

here am just struggling with life like everyone else. Right now I am doing

a computer business newsletter from home, & do internet business promotion.

Have just spent last 4 days making my way through some very ornery CGI

( " nother computer language common to websites for you non-geek s). Would be

interested in learning more about what your work with graphics has been.

Computer-based home business is turning into the largest cottage industry

in the world.

As far as the lack of recent list traffic, this happens at times.

We are getting to be a fairly large list, but list traffic varies widely.

Ken

November 25, 1999