Recovery Journal 3

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06/04 - Aches and pains are coming back and still with me :o(
Another stressful week doesn't help I suppose. Between stress at work and
the continuing stress of marital issues I've had "fibromyalgia" type flare ups
again this last week. Had to see the massage therapist twice last week, was
almost immobilized with pain after a few stressful events on Tuesday 06/01, the
massage therapist worked some of them out and I am feeling better but still achy
all over, was achy all over when I awoke this morning before even stepping
out of bed. It has been rainy and cloudy most of the
week too, I don't think that helps much either.

I heard back from the pharmacy on my hormone levels which by the way were:

estradiol-35.4 pg/ml
progesterone-.02 ng/ml
testosterone- 166 pg/ml
dhea- 128 pg/ml

They said: Your progesterone was not being absorbed.

Your estradiol is too high - results in depression and stress.

Your testosterone is too high.

No mention of the dhea levels.

Interesting the back of the test results from the Lab where the saliva test was done
gives normal values for: premenopausal, postmenopausal and men, testosterone and
dhea levels are given by sex, male or female and age ranges, given this, my
testosterone level was higher than that of a 20-29 year old male! Hmmmm!
And if testosterone is related to energy levels and sex drive you'd have thought that
both would have been sky high! Not the case though...as both have been very
low for about 14 months now! Sounds like I am a
hormonal mess...who would have ever thought!

Granted these results reflect the previous prescription I was taking of triestrogen-
0.625, progesterone 100mg and testosterone (supposed to be natural but was synthetic
-methyltestosterone!) 2.5mg all this in one capsule taken three times daily!! WOW!
and I'm still sane? (well half anyways) and people are still speaking to me!!
nothing short of amazing.

Still taking the new nhrt, my 2" 1x daily.It is going ok, I seem to be less prone to
depression but not any better at handling stress and this could be due to any
number of things! I've been told more than once that my symptoms scream of fibromyalgia,
also that I have every symptom of hypothyroidism although all tests including complete
panel come out normal.There is emerging research and findings that some people with
normal ranges on the standard lab tests are still suffering from symptoms of hypothyroidism.

So, fibromyalgia, hypothyroidism, wilson's syndrome, hormone loss/depletion or is it as
my former doc told me because I am overweight and out of shape, or am I overweight because
of all these other things??? I can say that I was of normal weight till I was eleven years
old, till my hormones kicked in then when I was put on the strongest birth control pills
made, at age 13 for the severe menstrual cramps and
pain..my weight went *boom* hips and thighs went *boom*

All I know today is that I still struggle enormously with my weight, I've put on another
seven pounds in the last 2 months...no changes in my diet or activity levels, I'm eating
less than I ever have and better!

But...on the up side! I know there's one! Still no more night sweats, that's a very
good thing! I still sleep soundly and fall asleep easily, I still have daytime
sleepiness, heck, I still wake up tired, despite using the cpap for sleep apnea,
speaking of which, I went to see the doc that did the apnea testing he wants to do another
sleep study in a month to test for narcolepsy since I've been using the cpap for two
weeks now and don't have any significant improvement, so, we'll see what that brings.

Well, that's about it for now, still hoping and praying!

06/16/99

My computer's been down then in the shop since last
week, just got it up and running again :o)

Still feeling "well" on the new nhrt, today is six weeks that I've been, using the
transdermal combination of estriol, estradiol, progesterone and testosterone.
No noticeable negative side effects, the increased perspiration that I was experiencing
has subsided, despite it being a hot, sauna bath here in S.W. Florida! I am definitely
more intolerant of the heat, more so than even before, it is so hot here,
and technically its not even officially summer yet! You can't even go from your car to
a destination without becoming overheated and sweating.

First visit with new primary care doctor (again) tomorrow, hoping it goes well and
that she's someone I can develop a working relationship with as a partner in my
current health care needs. Funny, I keep reading women post that their doctors are
telling them it is "rare" for women to not feel well after hysterectomy!! Guess they
haven't heard from any of us! Perhaps they mean hysterectomy, I bet they're
not referring to hysterectomy with removal of the ovaries!
THAT! is the big difference.

06/22/99

The visit with my new primary care doctor went real well, I really liked her a lot!
She came in and sat down and seemed like she had all the time in the world to talk to
me, impressed with that right off, can't say I've ever had a doctor appear that way!

The compounding pharmacist I've been working with sent her a letter saying that I
would be speaking to her about Wilson's Syndrome, which - God love him! helped to
open the discussion on thyroid and testing that comes out within normal ranges when
someone has all the symptoms. She was open to discussion and learning more about
it which pleased me a lot! It's a good start to a good relationship with my new doctor.
She also discussed with me that osteoporosis is a danger in over medicating with
thyroid and a concern. Seems I'm at great risk for it no matter how I go about it!
I'd rather feel well while I can and while I'm young enough to enjoy it!!

Still doing well with the transdermal nhrt. Today makes week 7. My "mood" and
sense of well being in general are still improved. Not much improvement however
with fatigue, joint pains and body aches yet. I suppose its about time to face
the fibromyalgia demon. I'm still just trying to focus on the nhrt and getting
through each day and keeping my stress levels down which has been difficult still
with two stressful jobs and continuing stressful family situations to deal with.
I know when some of these things ease up, I will begin to feel better.

When I came home from work tonight, I was tired and irritable and felt bad, when
they say with fibromyalgia you wake up everyday feeling like you have the flu,
that is so true. I laid down for a nap which I never do! and when I woke up, I hurt
worse than before I had the nap! My elbow joint hurt where it had been bent under my
head, my hip hurt where I had been laying on my side, just different and weird pains
in various parts of my body. That has been one of the most difficult things for me to
deal with in all this is to wake up feeling bad!!! To rest and wake up feeling worse
than you did or hurting worse than you did before you rested, this is hard to accept!
No wonder I'm tired. People talk about quality of sleep, well, I'm not sure because,
I am asleep, but I seem to sleep ok, I don't wake up in the night and have absolutely
no trouble falling asleep, that is something positive anyways! I know a lot of folks have
insomnia, how terrible that must be!

No new answers for today or this week! I go for my massage tomorrow, I hope it
doesn't near cripple me like it did last week. When I got up off the massage table,
I had a bad muscle spasm in my back that stayed with me all night and the next
day, I wasn't able to go in to work and had to take muscle relaxers all day! Now what
is up with that?? I have never had to take muscle relaxers in my life!!
Maybe I'm being "over massaged" :o) Wonder if thats possible *LOL* I get panicky at the
thought of not getting my weekly massage, even though it has some weeks been a hard
stretch financially to afford it, it has been a necessity!

That's about all I've got to report right now...been real wrapped up with some family
issues and just too busy. It seems about all the energy I have is for going to work,
if I do other stuff after work and on my two weekends off a month, my physical symptoms
exacerbate! Guess this is a wake up call to slow down a little bit. One day..some day...
I will get back to a normal life...Still hoping and praying!!!

07/03/99

I haven't written because I've been all crippled up byjeebers!!!!! No kidding!
On Saturday, June 26th, about an hour after I awakened my neck felt stiff and
sore, it progressed throughout the day to where it was very painful and hurt to
barely turn it from one side to the other. I tried taking muscle relaxers and
ibuprofen all day and applying a cold pack to no avail. Nothing and I mean nothing
helped. It was an extremely painful and exhausting day.

Same thing Sunday, it might have been a tad better but it still was extremely
painful, I could barely even tip my head back far enough to rinse out the shampoo.
Now bear in mind I did absolutely nothing to cause this, nothing different, same
pillow on my bed, etc., my mom told me I should call the doctor and get something for
pain but I thought surely by the next day it would be much improved, if not gone. But no!
by the time I woke up Monday morning to go off to work, my neck was so painful
and stiff it was practically locked up! This was a pretty scary feeling to awaken
with. There was no way I could go to work, at least not for awhile until I was able
to take something to help the pain. I didn't take anymore of the muscle
relaxers since they didn't help on Saturday. It took me near four hours, a hot
shower and some extremely slow stretching of my neck and shoulders before I could
move around enough to be able to go in to work and
spend a few hours getting done what HAD to be done.

I called the doctor and she was able to see me that afternoon. Of course she had
no explanation why my neck was like it was, why would she? I presented with no
"situation" to have gotten me this way. She prescribed me some pain pills,
loratab, which ended up making me very nauseous and I could not even take them :o(
What a predicament!

By Tuesday the pain was still not much improved, I had to go into work a few hours
late due to trying to work the pain and stiffness out and tried to eat a good
breakfast so I could take the loratab and hoped it wouldn't make me sick if I ate
something, but, that didn't help so I got to go into work in pain and feeling like
I would vomit at anytime...UGH!! I called my massage therapist (God Love Him!)
He got me in that afternoon, most of the pain was actually in the muscles along
the top of the shoulders, both sides and at the base of my neck. He worked on them
for an hour. It eased the pain a little. I went home and put alternating ice and
heat on the shoulders ending with ice for fifteen minutes at a time like my
massage therapist recommended. Wednesday was a little better but still pretty painful.
I went back to the massage therapist for another hour that afternoon. Things did
feel less stiff and painful. Thursday and Friday were better, still a moderate amount
of pain, and today things are much better, still have a little pain when trying to
turn my neck and I can't believe it has taken this long to go away!

So! Thats been my week. Things are still going well with the nhrt, Monday makes two
months on the new transdermal nhrt and I am anxious to see what my third month will bring.

I can say I have been very pleased with the first two months, I have vowed not to try
anything else as I have been tempted to try herbal supplements, etc. but want to
know and feel the true effects of the nhrt, hard to
evaluate if your doing a lot of different things!

I've had no negative side effects and no masculine type side effects from the
testosterone so far so..yippeee to that! I am still having a few hot flashes each
day but not a lot. I did realize however that I have not been using the 1.0%
estradiol cream prescribed for me as directed so it might be due to that! I never
noticed but on the tube it says to use a pea sized dab at bedtime then prn for hot
flashes, I was not putting the dab on at bedtime and just started that when I
noticed it a few days ago so maybe that will help with the hot flashes. Duh!
I felt like such a dummy when I saw that, had it for two months and never noticed it!

So, at least things are going well on that front! I'm still feeling "well" emotionally,
which I am very thankful for! Still hoping and praying that I have finally found
the correct nhrt for me!

07/23/99

Shortly after I wrote last, my neck began hurting again when I woke up one morning.
I had been thinking about some type of cervical pillow, so I promptly went to the
local medical supply store and after much contemplation over all the different
types bought a pillow called Accu-bak, its memory foam and has a small neck roll
built into it. I LOVE it! The first night I laid my head on it I could feel a sense
of relief in the pressure/tension around my neck and shoulders, within two days my
pain was gone completely and has not returned *knock on wood*!

I don't think this was any coincidence!
The pillow is great and I recommend it to anyone
that has any type of neck pain/problems.

I'm into week eleven on new nhrt, still trying to be reservedly cautious. I am still
feeling very well, these last two weeks have brought some good, solid, and consistent
feelings of well being, feeling more like myself again, the body aches and joint
pains are down to a minimum. I noticed the last two mornings that I'm not even
so achy and stiff when I get up out of bed in the morning.

I sincerely believe this is due to effective, complete nhrt. I believe effective
complete nhrt is allowing my endocrine system to begin to function normally
again and produce the full range of hormones that is allowing my body to return to
normal such as glucocorticoids, like the cortisol produced within the adrenal
glands that have a potent anti-inflammatory effect on the body, along with the many
other hormones produced within a healthy endocrine system that allow the body to
wonderfully perform all of its own healing functions in harmony.

08/15/99

I've gotten quite behind on my journal.

Not a lot new to report except 08/05/99 being the
three month anniversary of my transdermal nhrt.

I passed that anniversary with a sigh of relief and hope! To date I am still feeling
well, still feeling a 75% improvement in the longstanding health problems
of multiple traveling joint pains, body aches and severe fatigue that developed
8 months post tah/bso and continued to be severe until I began the prescription
transdermal nhrt (estradiol, estriol, progesterone and testosterone).

Some days, I still feel like there's a missing element (yea! probably my ovaries and
hormones *LOL*), and some days I feel as if I could be on the fringes of backsliding
into those previous health problems. I have had an increase in libido (yeah!),
and improvements in mood and concentration levels.

I hope that the next few months will bring increased improvements and
maybe a return to 90% recovered? well...

I remain ever hopeful~

09/12/99

Since I wrote last, I have had a flare up in fibromyalgia symptoms that I
have been grappling with, flare ups are very draining and often it is all I can do to
keep up with the necessary functions of daily life such as going to work and coming home!

Interestingly enough, I can now trace the beginnings of flare ups. Thus far, all
flare ups have been triggered by stress or a strong negative emotional reaction.
I can actually feel the cycle beginning with a backache or body aches usually
2-3 hours after a strong stressful or emotional reaction, then I usually continue
to ache the rest of that day, as if I have the flu. The next day, I will awaken with
pain in one or more joints, sometimes the pain is moderate, sometimes severe,
sometimes it only lasts for a day or two, sometimes for a week or more. The
reactions and the cycle have become quite predictable though. Something I can count
on with a fair amount of certainty! I guess this "is" fibromyalgia.

Prior to the last few weeks it had been near a month and a half since I had any
severe symptoms. A recent stressful event and mounting stress at work seemed
to set everything into motion again. Gee..maybe if I could keep my emotions
at an even keel (yeah right!) this wouldn't happen.

I am still using my necessary for survival, weekly massages to combat this
painful and now fairly predictable "syndrome".

I'll be busy and out of town in the next week. After I return, I'll be pursuing the
thyroid replacement option again with my doctor. There are just too many
symptoms. I've read if low thyroid is an issue, no
amount of good hrt will make up for the deficiency.

I will keep everyone posted on how that goes.

Still hoping and praying for us all!!

01/24/2000

Long time since I last reported in.
Still on the nhrt, same prescription although, I did just have another saliva test
done last week, I'm very anxious to see, after almost 8 months on the transdermal nhrt
what my hormone levels are at now! I'll post the results as soon as I get them.

These were the levels when I got them done in June 99':

estradiol-35.4 pg/ml
progesterone-.02 ng/ml
testosterone- 166 pg/ml
dhea- 128 pg/ml

I didn't have the dhea tested this time. Additionally, I have added
supplementation of L-Tyrosine 500mg 2x daily for the last three weeks.

Today is a bad day, I've awakened with my coccyx hurting very bad. It hurts to
sit and do just about anything, I don't think I slept well last night, and pain on
the top of my left foot which hurts to walk.

This pain started yesterday, did nothing to cause it that I can recall,it started
after I carried the groceries upstairs. The pain in my left foot, I only awoke with
today. Last week, it was my neck and muscles in the shoulders, extremely tight and
a sick pain radiating down into my arms and my right foot was hurting. It seems
like the old cycle is back again, at least temporarily

Since I wrote last in September lots has changed in my life. As far as fibromyalgia
and hrt loss symptoms go, things have improved from where I was in April of 1998
when the fibromyalgia began full blown, but,
I have not made near enough progress it would seem.

Since September, I have had body aches and pain off and on but they seemed to pretty
much coincide with the weather (exacerbation with cold,rain & humidity levels),
or my stress levels. I am still seeing the massage therapist once a week, this
month makes a year I have been going once a week, sometimes, it has been the
only thing that's kept me going.

I have been able to lessen my work load and am only working one job now instead
of the two that I had been working the last six years. I resigned from the FT,
very stressful job as staffing coordinator at a nursing home, that I'd held
for three years,on 11/30/99. Partly because I was able to, and partly because
of a strong attempt to reduce the stress in my life to try and get better.

I also will be getting remarried, to a very supportive, loving man that
I've known for sixteen years so my personal life is definitely improving! I had
hoped that my fibro symptoms might improve with it *sigh*

Other hormone loss symptoms have pretty much improved, I am still low on
energy and have a few blue days a month, these could be connected with the fibro too.

I don't know where I'll turn now in regards to my health and work. Right now,
I'll wait until the hormone levels come back and work from there.

I am in pursuit of other work. Wanting to do something that I love to do,
I've a few ideas, but haven't worked out any details yet. I would love to be able
to support myself somehow enough that I could work from home and continue
raising awareness with hysterectomy and nhrt. With a good block of time, and enough
reduced stress now, I feel I could continue efforts to contact influential individuals
in the health care industry that I might be able to make a difference. I continue
to get a large volume of mail from ladies that are suffering so many similar
health problems just like me. It's a big job keeping
up with it all, and something I am driven to continue.

That's my report for now.....wedding date is February 12th!
*big smile*

Stay tuned!

02/03/2000

It's still hard for me to type or write "00" as the year!

The last two weeks I've had a pretty bad fibromyalgia relapse.
Starting again with multiple, traveling, severe body and joint pains, waking
up with different body parts (hip, foot, neck, shoulders, coccyx, etc.)
hurting like I did something to them when I didn't *sigh*

I feel like I might be recovering though from the relapse and feel strongly
that it was due to the trauma and upset of seeing my fiance' who fell down a flight
of fifteen stairs at our apartment, at the bottom of them on Jan. 13th.
(He's doing fairly well now, he cracked a rib and has a bulged disc in his back now).
I'm very thankful he wasn't hurt any worse, he's a very healthy, active man and
I hope so much this doesn't become a chronic health problem for him! Since I had
a bulged disc eleven years ago and recovered from it with no surgery, I'm a good
coach and probably bad at nagging him about what he should and should not do.

I've added something new to my regimen (non prescription), wont' talk about
it now, not until I see what the results will be, should be VERY interesting,
I'll update on that in about a month.

Wedding growing nearer, only nine days now :o) Still on the by prescription,
compounded nhrt (estriol, estradiol, progesterone & testosterone). Waiting on my
second saliva test results to come back, should be soon. I can't wait to see how
the levels come out now and will share it with everyone when I find out.

Over and out for now!

03/16/2000

Well, life has finally calmed down a little so an update is overdue!

Married life is wonderful ! The wedding was wonderful!

My husband and I know each other so well, since we met over 16 years ago, and
lived together 6 of those! He's doing better with his back, it's slow going but
he's getting therapy now. Thankfully! it wasn't any worse than it is.

On to my trials and tribulations.....!

Last left off I was waiting on my saliva hormone test
levels to come back, and...come back they did!!!!

Let me first say, my compounding pharmacist says I must have contaminated the
saliva somehow, perhaps there was hormone cream residue on my hands.

Estradiol levels came out 2x higher than they should be, Progesterone a little low
and Testosterone about 100x higher than it should have been. I literally had
to laugh out loud when I saw the test results!! My first thought was they
could not be correct. How do I know this? Well if for no other reason but that I have
had NO male type side effects that would indicate too much testosterone, I mean NONE.
No facial hair, no increase in body hair, no deepening of the voice, etc.
There is no way the results could be that high and me
not have some male type side effects.

I got an alarming post card from the doctors office that is prescribing my nhrt, they said,
CALL Us!!! STOP THE TESTOSTERONE!! DECREASE THE ESTROGEN!!!

I did none of the three. I found it curious that they would just order me to completely
stop nhrt without even questioning the validity of the test results.

Abruptly stopping nhrt when one has no hormone production does not seem very
wise to me. I've been accused of trying to practice medicine without a license
before by a doctor but when your hormones get out of whack at this stage...
it ain't funny!!!!

I'll have to admit, I was a little alarmed myself, then when I got their postcard
(right before I left on my honeymoon of course!), I decided while I was away,
I would decrease what I was using to every other day and supplement with Progest the
other days to ward off any hot flashes.(Hot flashes on your honeymoon are not good!!! :o)

When I got back, I called my pharmacist and discussed the entire thing with him, we both
concurred the test had to be contaminated, he suggested I redo the test,
using a glove this time to avoid any contamination.

I then noticed Aeron, who did the testing had sent a letter with the results saying
the testosterone result was high and they would redo the test at no charge, so
I called them last week and requested another test, which is on the way. I did
call the doctors office today and left them the message that the test may have
been contaminated and I would be redoing it. So, I'll update when those results come back.

With regard to fibromyalgia, I'm doing better than I have in two years. I still
have some bad days, and still have joint and body pains,
but they are MUCH better than they have ever been.

I believe this is due to a few things.

1. Probably most important, good, effective, nhrt which is most compatible to
what our bodies make naturally. Our hormones work together with the chemical
messengers in our brains, neurotransmitters, stands to reason, to me,if hormones
are deficient or imbalanced, the whole system is off.

2. Working extremely hard at reducing the stress in my life! I think this has been
very, very important in reducing fibromyalgia flare ups! I am very careful about
the stress I let myself encounter. Resigning from the extremely stressful job was
probably the best thing I could have done. Even though it's been tough for us
financially with my husband out of work now for 2 months. I still have a part
time job and we're getting by. I'm tempted to go back to another full time job
but I know how important this time is for me to recover actually from the last
very stressful six years of my life.

I used to have an exacerbation in fibromyalgia pain sometimes an hour or two after
a stressful emotional event, it happened like clockwork, I would develop
pain in some joint of my body or my back then ache all over like I had the flu. So
far!! this is not happening to me now and I have had a few stressful *events* in the
last few months so I feel like I'm definitely getting on top of this.
It's a very tight line to walk though.

3. For the last month I began seeing my massage therapist 2x a week for 30 min.
instead of 1x a week for an hour, this has seemed to help my generous hips
*stay in place*, for the muscles to regroup and strengthen to hold them in the
correct place. He also suggested I start drinking distilled water instead of the
regular bottled water I usually drink, he said another of his clients that
has fibromyalgia has been helped by this, so I thought what the heck!
Can't hurt.
I was warned it tasted bad, flat, but I find no difference in the taste.

That's my update on nhrt and fibromyalgia, next I'll write about my experience
with trying to get my doctor to prescribe the T3 replacement the pharmacist
has been recommending for me for almost a year now. "But Doc...I've got all the symptoms!!"
It's really not funny though! Will write more on it later, perhaps tomorrow.

My Recovery Journal

Recovery Journal 2

Recovery Journal 4

Recovery Journal 5

Recovery Journal 6

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1999 Jeannah McElroy. Copyright
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