Hello everyone, my name is Barry. I have buergers disease as well. If
anyone visiting this site just found out they have it and need info,
please feel free to contact me if you like. 22 months ago after
hearing of buergers disease and then coming to the conclusion that I
most probably had buergers disease about 16 months before then I had
a very big scare.

So in other words after 3 years of trying to figure out what was
wrong with my feet (increasing pain in the arches because of lack of
blood flow, and this terrible numbing feeling in the ball of my foot
and through my toes and my foot continued to get bluer and bluer.) I
found out I had buergers and kept smoking. I said to myself well
surely I can be one of the 10,000 to be able to get this disease. I
was miserable because I couldn't run anymore, I couldn't play tennis
anymore, and I couldn't walk on a treadmill. I couldn't stand on my
feet for more than minutes at a time before I would have to leap on a
table to get off my feet and let the pain diminish. Diminish?? Yea a
little, then back up on my feet, ohhhhh I could barely stand on them,
could barely walk, the pain near causing me to sweat. Yea, I think
it did make me sweat many times. But what did I do,, I kept smoking.

At least I could enjoy smoking, I couldn't run, or play tennis, or
hike, so at least I could enjoy something,, yea,, smoking.. I truly
was in denial that the real cause of my pain had been established. I
guess in some way I wanted to prove that I didn't have buergers. I
would smoke and prove it wrong; my feet will get better... WRONG....
So 12 months after I had discovered buergers and about 6 months after
a vascular surgeon agreed with me that I had buergers disease I had a
very terrible scare. You see, I found out about buergers disease
through my Dad... Yea,, he used to smoke, and would always ask me
Son, have you quit smoking yet? Years went by, have you quit smoking
yet. Why did you every start smoking again? You had quit for 10 or 11
years. Yes, Dad I really do want to quit again. One day about 3 years
after I had started smoking again Dad tells me on the phone,, Hey
Son, I looked up in the medical encyclopedia we have about pain in
the feet. Besides mentioning Diabetes, they referred to a disease
caused from smoking called buergers... I said really? And then all
those little thoughts, watch my dad will be right about these stupid
cigarettes and be able to say I told you so, you should have quit
son... I thought I sure hope this buergers disease he just told me
about is not it. That would make him right. LOL..

Well, because of my Dad, I started asking the different doctors I had
been to, feet docs, Neuro docs, and vascular docs. about buergers..
OH. Well let me pull out the medical dictionary they all said...
Well, it became apparent that the consensus was in. What else could
it be? I had buergers. But what did I do,, I kept smoking. How can
this be, me having this very rare disease? I was not thoroughly
ready to believe that I had this disease... So, about 12 months after
I heard of the disease from my Dad, and then 6 months after it was
the consensus of the docs, my left foot, always the worst out of the
two, started swelling up one fine day. And with swelling becomes
worsened blood flow. Yes, the first real full blown buergers flare
up... I had a kidney stone once, and it is said to be as painful as
having a baby. I had that verified by a woman that passed a kidney
stone which also had a baby. She preferred to have a baby. Rare for a
woman to pass kidney stones by the way. Well the pain that kicked in
was about twice as bad as my kidney stone maybe 5 times. It happened
at a convenient time, on a friday afternoon.. Me go to a doctor on
friday afternoon? No surely this swelling will go away. I wished
that I had run to my doctor that afternoon in retrospect now. Because
that weekend was the worst weekend in my entire life, as far as
physical pain goes.

Well, by 8 o'clock the next morning I realized that I hadn't slept,
and had been in wreathing pain all night long. And the pain was still
there. The only thing I could do was to sit on my couch with my legs
down. If I put my legs up, the pain became even worse. But if I kept
them down all the time, they would feel as puffy and swollen as
puffer fish before the blow there hurricane force wind to knock over
their pray. And the pain, how do you explain that pain? A friend of
mine that has buergers also. I met him through my sister that
attended a school speaker function in Arizona. I live in California.
He was giving a presentation about buergers disease as part of the
anti smoking campaign funded through health related tax dollars at my
Sisters sons school. She noticed that he was talking about the same
disease I had been diagnosed as having. Anyway after about 4 or 5
days in to the swelling I called him for the first time. I had his
number for months before that, but when my foot swelled up to the
size of small watermelon I called him to see if he could kind of fill
me in on what I could expect. We hit it off and became good friends.
We have a lot more in common than buergers disease. Funny how
terrible things can bring about great things.

Anyway months later after the onset of the major buergers flare up in
my foot, he said it best about the pain of any explanation I have
ever heard... I was talking with him on the phone a few months after
this flare up and said, gosh those buergers exercises, how
ridiculously painful that is. No one that has not endured that pain
can understand what that is all about. He said exactly, that is why I
don't try to explain it anymore to people. They try to compare it to
a bad back, you know your normal throw your back out every once in a
while pain... I said yea, I mean when you put your foot up in the
air and let the blood flow out of it, it hurts so badddddddd it is..
and then when you put it down it is...... And my buddy breaks in and
says, yea,, it is like trading the worst F****** pain in the world
for the OTHER worst F****** pain in the world. We laughed…. I
normally don't cuss, I mean hardly ever. I don't really believe in
it. But I found that during a buergers flare up, cussing was one of
my least concerns at times during those wee hours of the morning with
no relief for days and weeks on end. So rung out on oxycodone that
life was a fairytale. The theme of the fairy tale was pain pain pain,
and take some medicine that didn't help very much at all..

The weekend when my foot swelled up was the beginning of a 6 week
strait pain fest. The pain was so intense that taking 2 percocet, a
trazadone, and an ambien, got me to sleep, or should I say pass out
for almost two hours. But even then, it was intervened by vassal
spasms that would jerk me up to sitting position and almost make me
come out of the drug induced coma. I remember thinking, I need
stronger medication. So, what do I do, that weekend??? I kept
smoking.. I was up all night long, at least I could enjoy a
cigarette.. Wait.. I didn't enjoy those cigarettes. I did not enjoy
anything, it was impossible the pain was too intense. But still that
good ol smoke was the closest I came to enjoying anything. But as I
sat up at the computer frantically searching for someone or something
that would tell me what was going on with my foot.. Wait, I knew it
was the buergers and because of cigarettes.. But no,, it can't be, it
is something else. So I would puff and puff and search out sites on
buergers disease.. I started reading of the amputations, the pain,
and saw fear in people's letters because they didn't know what to
expect with buergers... As I was sitting there smoking my cigarette
one night about 2 weeks in to the swelling, I was talking to
myself... You know, you need to quit smoking these anyway. You know
how bad you felt when you started smoking again. I shed tears when I
realized I had started smoking again. I had quit 11 years. Then
someone I dated that could smoke every now and then I allowed her to
smoke in my truck about 3 years after we had been dating on one of
our weekend getaways. That did it, that close proximity, surely after
all these years I could have one now and then like her... WRONG..

The same old story, before you know it and right at the time when the
tobacco companies had messed with the delivery method of nicotine to
the brain I started puffing those things again... And once the urge,
the addiction sparked, it was like I had to make up for all those
years I had quit. They tasted terrible about 3 or 4 days after I
started smoking them. The first few days they tasted great. Then they
started tasting bad, I knew I wanted to quit. I was so stupid for
smoking with her on the trip, but now I wanted one to taste good
before I quit again..All thoughts of addiction huh?? Stupid
thinking. But addiction works like that,, at the promise of something
being "good". So smoke smoke smoke, and before you know it they
tasted good again, a few weeks later, now I was hooked again, and I
could tell that there was something much more addicting about them
then before. It was like I was a machine that had to keep pumping
more and more nicotine in to me. I had quit and started again before
many years ago, and I never remembered them having the power that
they had this time. Thanks be to the money hungry owners of the
tobacco companies. They truly did make cigarettes more addictive.

I was getting sympathectimies (some sort of nerve block done by
medicating areas of the spinal column by injections) every week to
help relieve the pain and hopefully some of the swelling in my foot.
I was taking blood thinners and blood pressure meds, previous 12
months before the buergers flare up and extreme swelling. They did
little if any good.. Finally my big toe was so swollen and looking as
though it was minutes away from infection, my Doc told me he thinks
we need to amputate within the next 5 days or so, or risk of
infection spreading up through the tendon shaft and causing us to
have to amputate at mid-calf. Even as it was, I may have had to have
ended up with a mid-calf amputation. It is common for amputations to
resist healing and gangrene will set in or infection and necessitate
further amputation. He wanted me to get another opinion though for my
own benefit though. So he sent me to Davis Med. Center in Davis. Sure
enough, he concurred, it must be amputated soon, no way to save it. I
had gangrene on the end of my big toe because I accidentally whacked
my toe with my crutch one night will sitting at the couching bouncing
my crutch up and down out of nervous,,,,, I am awake and in pain mode
and must do something to take my mind off of the pain. Yea, so I
whacked my toe with my crutch.. That started the whole top front
portion of my toe to turn black as can be. Gangrene……

So a friend of mine drove me to UC Davis to get the other opinion on
Friday. And when we were on our way back from Davis and said, you
sure are calm about the fact that you may have to have your toe
amputated and then very possibly a transmetatarcel amputation or
maybe lose your leg. I said yea well,, the pain, if the pain goes
away, then it was the price that had to be paid.

I forgot to mention that about 4 weeks before that day, I was sitting
at my computer at 4 in the morning smoking a cigarette because I
couldn't sleep... sleep what was that?? I had some of the most crazy
conversations with myself. Funny what sleep deprivation can do. Yea,
smoking my cigarette. I said, I wonder if it really is these stupid
cigarettes. What if it isn't and I quit and this pain goes on and one
and the disease never goes away. Then I give up the one thing that I
can find some pleasure in. Then I thought, well, I guess it isn't
proven for sure that nicotine is the only cause for buergers disease,
but I know it is proven to cause lung cancer, emphazema, heart
disease. Heck, I could sit here and keep smoking and prove all of
this to myself, you know, prove that smoking causes say.....lung
cancer.. That would be fun to have.. Or I could keep smoking and get
heart disease, have a heart attack, that would fun.. I suddenly
thought, you are a slave to these things, you know it. You know how
much you enjoy being free of theme. You had quit for 11 years. Even
if it doesn't fix your foot, you don't want to sit here and keep
smoking for the rest of your life.. I looked at my cigarettes.. I
picked up the pack and crunch. I put the cigarette out and proceeded
to dump out all the ashtrays in the house and etc.. I quit....

So four weeks after that we were driving back from Davis, and she
dropped my off at home. I crutched my way in,, and went through my
daily painful shower and clean the wound and wrap my toe and put on
my big fluffy sock and sit down at the couch and writhing in pain
because I had been on my foot an exorbitant amount that day.

Sunday my beloved Son of 21 was coming over to help me get a few
things in order in my shop. I am self employed and had a couple of
jobs in the shop that I hadn't touched in 6 weeks. A few days before
that on our regular Wednesday night chess night, we both looked down
at my foot after I had gotten out of the shower and we both looked up
at each other and I could see the fear in his eyes, and he in mine.
My foot and toe looked like something out of medical horror story
magazine. That was two days before the trip to Davis for the second
opinion.

My plan for that sunday when he came up was to take plenty of pain
meds, put on bunches of warm clothes, and go sit on a stool and
instruct him on what I needed to get done so that I could pass the
work on to a friend of mine that was going to help me get the job
done in his shop.. That morning as I was getting ready to go out to
the shop, I thought man, I cannot go out in the shop with a big
fluffy sock on. What if I hit it or something, hit my other toes,
which would pop if I hit them hard on something I thought. So I
picked an old and the loosest fitting tennis shoe had. Pulled out the
laces and stretched it all out and gently put my foot in to it. There
was something almost comforting of the restraint the shoe encasing my
foot gave me.

So my Son and I went out to the shop and without thinking to much
about it my Son said about 2 hours later, Pop I haven't heard you
moaning or anything from your foot pain. I said, yea, I don't know
it is not doing to terrible right now. But we were busy so I didn't
think too much about it. Well I ended up out in the shop for about
twice as long as I thought I could even barely stand. I was doing
stuff I hadn't done in a month and a half. Like walking without a
crutch. Didn't dawn on me though..

The day was over, I was taking off my shoes and my son was sitting
there talking with me, and I gently, ever so gently took my shoe off
of my left foot, and then my sock. And then I looked up as my Son
did also and I saw this look of shock in his eyes, and he in mine. We
looked at each other and said, in unison "the swelling went
down"!!.. We both looked at each other again. I said wow, that is why
I was even able to get my foot in this shoe to begin with. I remember
thinking, there is no way I could have gotten my foot in to that shoe
yesterday. The only thing I can figure is that for 6 weeks I was so
much in to the pain pain pain pain pain, that I didn't notice the
absense of it that morning. It was only then when the day had ended
that the full impact of what had happened became apparent. Some time
that saturday night or early sunday morning the swelling subsided by
about 75% and with it went 75% of the pain.. My Son and I were both
very thankful at that moment, that it appeared that the Lord had
worked a miracle and answered prayer that if it was in his will that
the swelling and pain would subside, that I would be able to keep my
foot.

The next morning was monday, and I went to my Vascular surgeon Doc.
What a great guy.. I had a follow up appt. because of the appt. at
Davis Med. Center. I had the choice of where I wanted to have the
amputation at.. The Doc walked in with his head kind of low that
morning because he had talked to the Doc at Davis. He asked me..
Well, where do you want to have your amputation at, here in town or
at Davis. I said in an excited voice.. DOC! Look at my foot! He
looked down and looked up and said in the most surprised voice.. WHAT
did you do???? He meant, what happened to the swelling.. I said, I
don't know Doc, but it took me about 12 hours to notice it had gone
down. He was in shock and said something to the affect that he had
never seen ischemia as severe as that subside in such a dramatic
fashion. He looked at me and said, I have some good news, we don't
have to amputate.. I kind of laughed and thought, there is no way
your taking it off now, the majority of the pain and swelling is
gone.. LOL...He said it sure is a good thing that happened when it
did. The Doc from Davis and myself felt that the toe should come off
as soon as possible, this week. A couple of days and you would have
been in the hospital and we would have never known that the swelling
had subsided on its own accord. You see the first order of business
before the amputation was to get the swelling down. That meant tying
my leg up in the air and injecting me with morphine for approximately
3 days so I could stand the pain as the blood ran out and the
swelling went down so as to allow surgery..


It has been 19 months since then. I have not even puffed on a
cigarette and do not ever intend on doing so.. It is too bad that the
cigarette packages don't carry a warning (smoking can lead to
buergers disease). See, for me, I had the symptoms of the disease 3
or four years before I started smoking again with my girlfriend. But
I didn't know that is why my left foot got numb so quick when I went
on my bike rides. If I would have heard of buergers disease and it
was an accepted fact that cigarettes causes buergers I would have
never picked up a cigarette with my girlfriend. I would have never
let her smoke in my truck. I would have known I had the disease, no
mystery involved. I see that some people keep on smoking even after
amputation.. How sad that the addiction has over powered you so much.
I will pray for you that you have the strength to quit. Or maybe you
want to prove that they cause lung cancer too??

I have found that there is a possibility that toluene, acetone,
lacquer thinner and contact cements may cause buergers flare ups. I
am a cabinetmaker and work with all of these chemicals at one time or
another. Some of these chemicals are also found in cigarettes. I
would suspect all of these plus nicotine. After all, all of them are
vassal constrictors.

But one fact I know.. That cigarettes do cause buergers and buergers
flare ups.. I found that out after going to a casino to play a little
21 about 7 or 8 months ago. Within 48 hours my toes did swell up a
fair amount. That scared me again.. Do it for you and those around
you…. Quit now. It is the one thing you can do that will help you
feel better, guaranteed. You know you will feel better about
yourself too.. In every case I have read where some one quits smoking
the symptoms and pain lesson. The gangrene eventually sloughed off of
my big toe, and my foot is 30 shades lighter than it was a year ago.
I mean, lots more blood flow. I will never be healed, or cured from
it unless some cure comes about. And I wear steel toed boots all the
time in the shop. I am extremely careful if I am bare footed in the
house. I try my best to never go barefooted. A cut or infection may
heal, and then again it may not.

I still have that puffy feeling at times, I still have the pain in
the arches, I still have some slight vassal spasm at times. But I do
sleep now at night most all the time without the aid of sleep meds. I
still do take pain meds because I am on my feet all the time and it
is more dangerous for me to be dealing with the pain than it is to be
relaxed about it. But the main point is this.. Since I quit smoking
and the Lord saw I tried and he let the swelling disappear, my life
is almost normal.. Not quite,,, still has its pain, sometime worse,
sometimes less, but rarely if ever like it was. I have had a couple
of times where the toe swells ups again a bit, sort of like a
tourniquet has been tied around it. Some of my little toes get
feeling that real numby feeling, even as I sit here typing. But I
think over all, I have a good chance of keeping all of my toes and my
feet if I am careful and I stay away from cigarettes..

I actually ended up taking the blocks out from under the Head board
end of my bed. If you are suffering a buergers flare up. It helps to
keep the appendage lower than the heart. Just the opposite of most
circulation pain. About a 6" tilt from one end of the bed to the
other.. Stay away from any vassal constrictors. Coffee, Caffeine/soda
pop, cigarettes, ephedra, and many allergy meds. Anything that speeds
up the heart by constricting the blood vessels. And I would highly
suspect the chemicals afore mentioned as well.. Short walks a few
times a day on your feet. Don't sit around and get heavier. Do your
best to get in good shape and stay in shape. Keep extra pounds off…
The lighter on your feet the better.

If you find out that you or a loved one has this disease, I know it
is scary to find out just how bad it can be. That is why I didn't
slack off in my telling of my story.. I will not lighten the severity
of the pain involved. Because I firmly believe if you stop smoking,
the severity of the pain (will) lesson, and if you were on the verge
of losing a toe or a finger or a foot, that if you quit smoking NOW,
you have a great chance of saving it. Some may have gone too far. I
certainly thought I had. I was 2 days away from getting it lopped
off.

But, Praise the Father,, for his tender mercies. I still have my foot
and so many blessings that came from this terrible disease. Yes,
blessings. A true gratitude and understanding of the severe pain
that many people have experienced. Anymore I feel like I can handle
any pain you would want to throw at me. In fact if you are having a
terrible and painful buergers flare up. Let me know.. I will ask to
carry some of that pain for you if the Lord so wills. I know that
when I have unselfishly prayed that someone else's pain would be
lifted, that I would carry it for them, often times more than not, my
pain lessoned. All things work for good who love the Lord..


Contact me if you need some info or help.

Sincerely

Barry