--- In beurgersdisease@yahoogroups.com, "bmackster" <mckbarry@s...>
wrote:
> 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