OT I'm alive

Sooz, You are loved even when you don't go above and beyond. Take care of
yourself.

Tina


"Dr. Sooz" wrote in message
...
So sorry to hear about your pain. Hope the relief has continued.

Sweetie, your words touch me and warm me.

Just to keep everyone abreast of what's been going on, as briefly as I
possibly
can -- I haven't been keeping it to myself on purpose. It's just been
hard to
know when to say anything. It's been so unresolved for a long time.

To start with: when Kevin graduated law school in May 2002, it started a
cascade of events from which there was no respite for me (or for him, but
this
is about me, me, ME!). Fibromyalgia reacts badly to stress, blah blah
blah. A
couple of the events were really hard on me physically, mentally, and
emotionally -- not bad events, but demanding. The damp winter cold in the
SF
Bay Area made things worse.

The fibro pain, and other symptoms, got gradually worse and worse and
worse. I
didn't notice it at first, and I had so much going on that I didn't notice
it
for a long time. Finally Kevin ended up in the hospital himself, with
several
scary events (including ambulances carrying him away twice). I lost a lot
of
sleep, really crucial for fibro folk.

About a month after he got better, I noticed I had gotten so bad I wasn't
getting out of bed anymore -- not because I was depressed (though I was!),
more
that the pain had completely beaten me and was ruling my every move. I
wasn't
able to make myself feel better -- I didn't have the energy to do the
necessary
stuff, but I also was unable to make any difference in the pain. Nothing
worked. I saw my doctor, who helped with new meds (not painkillers, but
an Rx
that neurologically prevents pain). The first two months of the Rx made
me
sleep most of the time. I had to cancel everything.... dentist
appointments,
haircuts, bead classes, everything -- too hazardous to drive!

It started to help. I was so grateful! Two weeks ago, I reached the full
dosage of the meds (it takes a couple of months to slowly, gradually
increase
the dosage to therapeutic levels). Whew. I was starting to lose my usual
personality; it was rough. I'm now starting to bead, be able to have
Mercury
for a real visit, get my hair cut again. And my teeth are really clean
again!


I had some ups and downs, and serious setbacks, during the gradual
increase of
the new meds. It was a struggle. The side effects are almost
nonexistent,
except for the (now past) sleepiness, but that wasn't true at first. The
pain
fluctuated without warning, and affected my morale a lot. I didn't bring
news
of it here, because I didn't know what was going on from one moment to the
next. I was so confused, freaked, afraid, struggling, and really
suffering
that I didn't know what to say. My memory was totally screwed up (worse
than
usual) because I was using up all my energy trying to get through the next
half
hour.

Thanks for the treats anyone sent me during this time. It really helped
me not
come completely unraveled. I was slow about thanking everyone, and not
consistent in where I posted or emailed my gratitude. I may even have
not-thanked someone, or more than one someone. I apologize if I did that.

It's been indescribably awful; I don't know that it's over yet. I'm still
kind
of in shock. I feel like a different person. It just went on for way too
long. If I'd known, last May, what I know now, I don't know that I'd have
had
the courage to put one foot in front of the other. I'm still gun-shy and
not
up to whatever "normal" is for me.

That's the story.


~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

Neurontin links I found this morning below. I'm going to ask my Dr. about
this.

Public Citizen's eLetter: Neurontin (GABAPENTIN)
http://www.citizen.org/ELETTER/ARTICLES/neurontin.htm

Neurontin Significantly Reduces Chronic Neuropathic Pain
http://www.pslgroup.com/dg/D6AC6.htm

neurontin
http://www.burningneuropathy.com/neurotin.htm
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

Sounds hellish. I am glad there is light dawning at last.

Deirdre

On 06 Jul 2003 06:02:43 GMT, uppies (Dr. Sooz)
wrote:

So sorry to hear about your pain. Hope the relief has continued.

Sweetie, your words touch me and warm me.

Just to keep everyone abreast of what's been going on, as briefly as I possibly
can -- I haven't been keeping it to myself on purpose. It's just been hard to
know when to say anything. It's been so unresolved for a long time.

To start with: when Kevin graduated law school in May 2002, it started a
cascade of events from which there was no respite for me (or for him, but this
is about me, me, ME!). Fibromyalgia reacts badly to stress, blah blah blah. A
couple of the events were really hard on me physically, mentally, and
emotionally -- not bad events, but demanding. The damp winter cold in the SF
Bay Area made things worse.

The fibro pain, and other symptoms, got gradually worse and worse and worse. I
didn't notice it at first, and I had so much going on that I didn't notice it
for a long time. Finally Kevin ended up in the hospital himself, with several
scary events (including ambulances carrying him away twice). I lost a lot of
sleep, really crucial for fibro folk.

About a month after he got better, I noticed I had gotten so bad I wasn't
getting out of bed anymore -- not because I was depressed (though I was!), more
that the pain had completely beaten me and was ruling my every move. I wasn't
able to make myself feel better -- I didn't have the energy to do the necessary
stuff, but I also was unable to make any difference in the pain. Nothing
worked. I saw my doctor, who helped with new meds (not painkillers, but an Rx
that neurologically prevents pain). The first two months of the Rx made me
sleep most of the time. I had to cancel everything.... dentist appointments,
haircuts, bead classes, everything -- too hazardous to drive!

It started to help. I was so grateful! Two weeks ago, I reached the full
dosage of the meds (it takes a couple of months to slowly, gradually increase
the dosage to therapeutic levels). Whew. I was starting to lose my usual
personality; it was rough. I'm now starting to bead, be able to have Mercury
for a real visit, get my hair cut again. And my teeth are really clean again!


I had some ups and downs, and serious setbacks, during the gradual increase of
the new meds. It was a struggle. The side effects are almost nonexistent,
except for the (now past) sleepiness, but that wasn't true at first. The pain
fluctuated without warning, and affected my morale a lot. I didn't bring news
of it here, because I didn't know what was going on from one moment to the
next. I was so confused, freaked, afraid, struggling, and really suffering
that I didn't know what to say. My memory was totally screwed up (worse than
usual) because I was using up all my energy trying to get through the next half
hour.

Thanks for the treats anyone sent me during this time. It really helped me not
come completely unraveled. I was slow about thanking everyone, and not
consistent in where I posted or emailed my gratitude. I may even have
not-thanked someone, or more than one someone. I apologize if I did that.

It's been indescribably awful; I don't know that it's over yet. I'm still kind
of in shock. I feel like a different person. It just went on for way too
long. If I'd known, last May, what I know now, I don't know that I'd have had
the courage to put one foot in front of the other. I'm still gun-shy and not
up to whatever "normal" is for me.

That's the story.


~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

Barbara, I love you. :-D

OK, been here, done this. Well, except for the creep.
My husband is also disabled, so what can he say?
I have a yet-to-be-named neurological problem that causes
intense pain in, well, everything from my hips down. It started
in my left leg, now it's in both. And not just sciatic, it's front,
sides, back, hips, tailbone, you name it. It got so bad that I
finally set a date. July 4, 2003. My independence day. The
day that I was going to jump off a bridge because I couldn't
take the non-stop pain anymore. It has come and gone. I'm
still here. Why?
I finally found a pain specialist that understood that living
with that kind of pain is not an option. And the fact that
none of the 17 specialists that I saw could find the cause
didn't make it any less painful. Now I'm on a 100mg
Duragesic patch. I change it every 3 days. I also use
vicoden (hydrocodone), when the pain overcomes the
patch. I also have RLS and take a lot of other drugs
when I go to bed at night so that I can sleep. This,
of course, leaves me too exhausted to move during the
day (sound familiar?). Enter Provigil. It's a new drug
developed for narcolepsy. But it has proven very
effective for people with chronic exhaustion due to
poor sleep or a lot of meds. It took some wrangling
to get my insurance company to approve it, but we
got it done. Now I function almost like a "normal"
person. I can drive a car. Work in my studio. I
can even do shows if I have someone to help me
so that I can take a nap if I have to. Also to do all
the heavy lifting.
If you do not have a pain specialist, get one.
Explore the Duragesic patch. Get Provigil. You
will get your life back.
Oh, and anyone who doesn't understand what
pain can do to your life and gets holier-than-thou
about it -- pour some cayenne pepper in their
shorts. When the pain finally stops, ask them
how they would feel if that burning kept up for
months, then years, without ever stopping.
Not even for a minute. If they still don't get it,
throw them off the bridge.
Barbara
Dream Master
www.dreamweaverstudio.com
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne

Sooz, You are loved even when you don't go above and beyond. Take care of
yourself.

Tina

~blubber~ ~sniff~
~~
Sooz
-------
ESBC
Dr. Sooz's Bead Links
http://airandearth.netfirms.com/soozlinkslist.html
One of the advantages of being disorderly is that one is constantly making
exciting discoveries. ~ A. A. Milne