Re: I'm new to the group

[Guest guest]

Hi ,

It looks like we have a lot in common! I read your message and

thought I was reading about myself.

I use St. 's Wort (with doc's OK) to combat depresion and so far

so good. My worst depression experience was induced by Topomax- it

made me suicidal- arrrrgh! I never want to go there again.

I normally break my vicodin in half so if it tkes care of the pain I

figure I'm ahead of the game. I give it an hour to kick in, if it

isn't working I take the rest of the tablet. My Rx is for 3 per

day, some days I can squeek by on 1 1/2.

I do lots of PT stuff at home and put my dependence on that. My doc

isn't much in favor of pain meds and it's been a real fight to get

vicodin. I started with 5 mg 2x per day; it took 18 months to get

7.5 mg 3x per day. Yeah, it's been painful!

I'm trying ESI again, and it is working much better than before. I

switched pain clinics and go to Jewish Hosp. in St. Louis

(that's where superman went), they do ESI's a little differently

there from my previous clinic.

OK, I'm starting to ramble. I am just glad to hear from you. I

wish you a more painless day!

GBY

[Guest guest]

>> I'm trying ESI again, and it is working much better than before. I

> switched pain clinics and go to Jewish Hosp. in St. Louis

> (that's where superman went), they do ESI's a little differently

> there from my previous clinic. <<

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

Is there a place somewhere that lists all the common abbreviations? I would

like to know what they mean, I feel really dumb as you all use them like

they're common knowledge and I have no clue what they mean.

Marita in Montana

[Guest guest]

Welcome ! I am sorry you have to be here but we are glad to have you!

Gwen in Kansas

wrote: Hello all,

I've just joined this group and having read some of the previous

posts,

[Guest guest]

Hi Marita,

These abbreviations can be a nightmare! I am completely clued-out a

lot of the time.

ESI is epidural steroid injection. It's a procedure that places

steroids close to the vertebrae to combat inflammation- and helps

reduce pain.

I'm a little surprised your husband hasn't been to PT (physical

therapy). However, it isn't always indicated. It teaches you

various 'exercises' and stretches that help align your body,

stabilize your spine, strengthen muscle groups, and all kinds of

stuff. They also do certain 'modems' to relieve pain. It is worth

talking to your doc about.

PT isn't a fast or easy solution. It takes time for it to make a

difference- especially the exercises. They can do certain

manipulations and use various electronic devises (like TENS) that

give immediate relief- but the follow-up exercises must be done to

get the full benefit.

I hope this helps!

GBY

[Guest guest]

Hi ,

Welcome to the group! We have a lot of people here that have been

thru a lot, I am sure there is one or two that might be able to help

you out on your quest.

I too, have been thru back surgeries, without success. I am also on

Oxycontin 80 mg, twice a day and also 40 mg twice a day, so every six

hours I take pain meds. They help somewhat. Better than anything else

I have been on.

I have been waiting to hear about my SSDI hearing so I can look into

the Intrethecal Pain Pump further. I have also done a LOT of research

on it and how it works and helps. Other than actually getting it

installed, I have all the information on it that I could get. My

sister in law worked at a pain clinic that did the instalation of

these, and she said that, on the average, there was an 50% reduction

in pain. I would take that!!!!

I hope the best for you on your search and I am sure you will find

what you need to know here.

Huggs,

Sandy

Moderator

[Guest guest]

>> ESI is epidural steroid injection. It's a procedure that places

> steroids close to the vertebrae to combat inflammation- and helps

> reduce pain. <<

Thank you for the explanation.

>> I'm a little surprised your husband hasn't been to PT (physical

> therapy). <<

Oh, he has, but it had nothing to do with the tens unit. Maybe I

misunderstood, but it sounded to me like this person was prescribed a tens

unit and had to go to PT at the same time.

PT usually doesn't do Mark any good. He hurts more than anything else

afterwards. He's done it on and off for a lot of years.

>> PT isn't a fast or easy solution. It takes time for it to make a

> difference- especially the exercises. They can do certain

> manipulations and use various electronic devises (like TENS) that

> give immediate relief- but the follow-up exercises must be done to

> get the full benefit. <<

So it IS a package deal then, the tens unit and PT? I have to ask Mark, but

I really don't think the doctor that prescribed it mentioned PT. This was a

VA doctor, of course.....

Like always, you are very helpful, , thank you so much.

Marita in Montana

[Guest guest]

Marita,

When I first came to this group, I had trouble with some of the

abbreviations too...we can't know it all! But after a while, and yes,

asking, I've learned. They may seem like gibberish to you now, but

believe me, if you stick around long enough, you learn a lot, and not

just abbreviations. You learn an understanding (if basic) of other

illnesses, which just might someday help someone you know. Knowledge

is always power!

Jen

[Guest guest]

Hi Marita, (and Mark)

TENS and PT are not a 'package deal'. How/when/if you get them is

up to your doctor.

It is important to get your doc included in a 'team effort', he

knows and discusses various options available, and why he wants to

try one instead of another. The doc is the 'brain'- or the knower

of information. He is also your way of accessing drugs, therapy,

tests, etc.

The patient is the one with the 'vital' info- what's wrong,

where/how it hurts, etc. How the meds are working/not working.

Advocate/wife/husband/caregiver is the one with the clear head.

Ensures all necessary questions are asked, answers understood.

Keeps track of needed records, ensures follow-up care- does all the

stuff the would/shoud do if they COULD.

These 'roles' are not easy to establish or maintain under the best

of conditions, but it gives a framework to have an organized

approach to getting 'good' health care.

I used to get my health care through the VA. I wish you well, and

tons of good luck!

I'm tickled pink that any of this stuff is helpful for you

GBY

>

> So it IS a package deal then, the tens unit and PT? > Marita in Montana

>

[Guest guest]

Hi ,

I'll be starting on St. 's wort soon, I hope to find it helpful

for the depression. I'm feeling much better not taking the

antidepressants so far but I do feel the added benefit of St. 's

Wort will be helpful.

I canot break the OxyContin in half of course but my breakthrough med

is Lortab, the 10mg version of Vicodin. I usually break them in half

and if not needed, that much the better.

One of my life changes has been a separation from my wife, problems

due in part to my medical problems but many other incompatibilities

prompted the change. I've been trying to move my things but I have had

a difficult time moving the boxes and such which has caused a

significant increase in pain. I had help with the initial move of two

pieces of furniture which helped quite a bit as I could not have moved

it at all. I've been spending a lot of time with my heating pad or ice

packs Different situations now have prevented me from gathering the

remaining possesions until I have a court order.

I tried Epidural injections with little success. One particular

session, I had a terrible, painful time as a student was allowed to

try their luck on my back. A pinch and then a shove had all the nerves

in my lower back and right leg firing painfully. I had sunsequent

injections but I made sure it was done by someone qualified.

I doubt I'll be going the Intrathecal pump route, my primary insurance

has been canceled and while Medicare says it's possible they will

cover it, the end copayment cost is prohibitive. The lack of adequate

presription coverage even considering the new Medicare benefit is

going to make the OxyContin prescription questionable. I'll have to

decide what is more important, eating and a roof over my head or pain

relief

Thanks for your input and support.

~

[Guest guest]

Gwen wrote:

>Welcome ! I am sorry you have to be here but we are glad to

have >you! Gwen in Kansas

Thank you for the kind welcome Gwen. I'm happy I've found such a good

group!

~

[Guest guest]

Hi Sandy,

Thank you for the kind welcome.

In reading some of the posts, I can see there are many people going

through quite a lot. It's good just to be part of a group where

someone understands about chronic pain and how difficult it can be.

As you may have read in a previous post, my status on the Intrathecal

pump is questionable as well as my ability to contine taking

OxyContin. I have been on OxyContin 20mg for quite a long time and in

that time, my back condition has worsened and of course the tolerance

of the medication comes into play. My doctor is very hesitant to raise

the dosage of the OxyContin to give me a more pain free existence but

with the breakthrough med and as much heat and ice I can take, I do

alright. It's the low level, constant ache in my back and legs that is

very troublesome even while taking the meds I am on. I've accepted

that I will have to live in a certain amount of pain.

It's very frustrating to have gone through two back surgeries to end

up with no relief and I feel will cause more problems as time goes on.

Good luck on your SSDI, it is a very difficult process. I spent over

two years dealing with SS until I was finally granted.

Thanks again for your thoughts and support!

~

[Guest guest]

>> TENS and PT are not a 'package deal'. How/when/if you get them is

> up to your doctor.<<

Okay, I didn't think so, but was confused after reading what someone else

had posted about getting a TENS unit and having to go to PT.

>> The doc is the 'brain'- or the knower of information. <<

You can always HOPE s/he is, unfortunately many times this is not the case.

>> Advocate/wife/husband/caregiver is the one with the clear head. <<

Again, we can always hope so. It's really hard to keep a clear head

sometimes, seriously....:-(

>> I'm tickled pink that any of this stuff is helpful for you <<

Oh yes, it most certainly is. I'm just starting out trying to get everything

in order. Mark, the one who is having all these health problems, doesn't do

much in the way of research, I'm actually beginning to think that he has

given up.

Marita in Montana

[Guest guest]

Hi !

I'm glad to help as best I can.

Try to get the rest you need. The physical pain thing always

screams at us when we over-do. The emotional side of chronic pain

goes about it's work vey 'silently'. Just taking a short lay-down

from time to time helps.(works real good if you can get your mind to

vegetate!)

Maybe somebody in the group will have some ideas of how to get

drugs/treatment at a lower cost- or how to get the doc/hospital

settle for what medicare pays. Negotiations are sometimes very

helpful. If you can handle it, Medicare Part B and supplemental

insurance are very worthwhile to have.

Hang in there- tomorrow is another day, perhaps even a better

one !

GBY

[Guest guest]

HI ,

This group has been great to me!! You are right, there are so many

different kinds of people with so many different kinds of pain but we

all share that pain.

I understnad about your doctor being hesitant about increasing your

Oxycontin, but if it controls your pain, there shouldn't be a problem.

Every three or four months I was having to have my dosage increased!!

I hated it. But I am finally at a dosage that is working for me. I am

thankful for that.

Just keep on posting to the group and sharing your experiences, it

brings out others that have similar things to talk about.

Huggs,

Sandy

Moderator