A newbies painful journey

[Guest guest]

Hi,

I recently joined your list. I have scanned through the archives

and I have learned so much by reading your posts. Finally I have

found a place where I no longer feel alone in my pain and

suffering. So many people have no clue at all the pain people with

neuropathy experience on a daily basis. They expect you to just

deal with it as if it is nothing more than a paper-cut. Just toss a

bandage on it and move on.

Recently I was diagnosed with Polyneuropathy, and diabetes (type

II). My neurologist suspects that I have Lupus and is sending me to

a rheumatologist for more testing. I also have 3 bulging disks

(lumbar region), and 1 herniated disk. I have swelling (edema) near

my spinal column, and neural canal narrowing. All of this showed up

in an MRI that was done. I also have bilateral disk disease. I

think they also called it degenerative disk disease. According to

the MRI I had fractured four vertebrae before (I have no idea when

this happened because my back is always hurting me!) and they look

healed. My back really hurts me all the time. If I stand for more

than 5 minutes it becomes so stiff that I have to stretch and reach

for my toes to ease some of the pain, and so I can continue with

whatever I was doing. It usually becomes very tight feeling, and

stiff, with lots of lower back pain.

I have massive edema in my lower legs and feet. My body is always

swollen to a certain degree ¡V even my hands and face at times. In my

lower extremities the pain is excruciating! Sometimes it is so bad

that any movement makes me want to scream. My skin is extremely

sensitive to touch, and it bruises very easily. For some strange

reason (cause still unknown) when I sit in office chairs, dining

room chairs or regular chairs my edema is worse, and the pain become

almost unbearable. It¡¦s difficult to concentrate on anything else

because of my pain. It¡¦s always foremost in my mind. I have

difficulty walking due to decreased flexibility, aching joints,

stiffness and terrible burning pain. I¡¦ve had to stop working

because of the pain and recently filed for ssdi. I forgot to

mention that the edema in my lower extremities gets better when I am

in a recliner. A recliner is about the only thing that I can sit in

that doesn¡¦t cause me pain. Anything else causes my legs to swell.

Well¡K except being in bed. ƒº

The pain and swelling began back in ¡¦96 and progressively worsened

over the years. I had very inadequate health care. When I did see

my GP he attributed everything to me being massively obese. I went

to the local health clinics and was told the same thing: You¡¦re fat.

Lose the weight. None bothered to run any tests to see if there was

any underlying cause for my symptoms. They merely looked at me and

stated the obvious. In ¡¦97 I went to Vocational Rehabilitation for

help. They sent me to many different Doctors and none were able to

come up with a diagnosis. Personally I think they sent me to the

wrong kinds of Doctors. I stopped with VR because I found work and

they would not give me the time off for Doctor¡¦s visits. Several

years later, after not being able to hold down a job, several

evictions, chaos and turmoil I went back to VR in 2001. It has

taken them since 2001 to the present time to receive a diagnosis.

No wait¡K that isn¡¦t entirely correct. In 2002 I was diagnosed with

having GERD and a hiatal hernia. Another Doctor diagnosed me with

carpal tunnel syndrome in both hands, and a compressed ulnar nerve

in both of my arms. I also had an anal fissure and hemorrhoids.

Sounds like fun, huh? <laugh>

In 2003 I had surgery on the fissure (what an introduction to

surgery! Sheesh!), and my left arm was operated on for the ulnar

nerve compression, and left hand for the carpal tunnel. I was

supposed to have my right arm done for the ulnar nerve but refused

it because the other surgery didn¡¦t correct my problem. It made it

much worse! And I have what I refer to as ¡§dead spots¡¨ in my arm.

I am unable to feel properly and the arm always aches.

In 2003 I went to a foot Doctor who diagnosed me with: plantar

fasciitis, Morton¡¦s neuroma, in-grown toenails, heel spurs, toe-nail

fungus (yuck), and bio-mechanical problems. What joy! No wonder

why I was having a difficult time walking! Sometimes my feet would

burn so badly that the fibers in my socks would irritate my feet.

No wonder why I often walked around bare-foot.

In March of 2004 I finally had foot surgery for the heel spur on my

left foot. My Lord talk about some terrible pain! I will never

have that surgery again! My right foot is supposed to be operated

on but there is no way I will do it. It was far too painful, and it

didn¡¦t help that my foot became infected. I am supposed to have my

Morton¡¦s neuroma in both feet operated on soon, once the Doctor can

get my edema down to a level where he feels comfortable operating,

and everything else corrected save for the heel spur on my right

foot.

In addition to all the above I also suffer from debilitating

fatigue. I have good days and I have my bad days. I also have days

where my thinking is fuzzy and I feel like I am in a fog. Speaking

is difficult at times because I get very painful blisters on my

tongue and often if feels as if it is swollen and difficult to

maneuver. Truly I am not a hypochondriac! I know that I may sound

like it and that is what my family used to say but now from all this

testing I am finding out how inter-related these symptoms are.

I long for a day where I am limber, pain-free, and energetic. I

miss being able to do everything I used to. I feel trapped in an

old woman¡¦s body. I lost most of my friends through the course of

time because I simply could not do the same things I used to, and

they moved on. Lack of being able to hold down a job has also

curtailed any entertainment. These past 8 years have been brutal

for me. I¡¦ve been under chronic stress, and intense pain for too

long and it has worn me down.

Hopefully the rheumatologist will be able to pin-point exactly what

auto-immune disease I have. At least I will know what I am battling

then. It¡¦s far easier to see your enemy that to continue battling

some unseen and unknown force. If I have Lupus then I will do

everything possible to lessen the severity of the disease. I hope

and pray that I get on ssdi. I so desperately need it and the

healthcare that comes with it. I forgot to mention that the

neurologist put me on neurontin 300mg 3 xs¡¦s a day, pentazocine

650mg 4 xs¡¦s per day, vitamins B-6 and B-1, cellebrex 200mg once a

day. I¡¦m also on lasix for the edema and a potassium supplement

(that I hate taking), protonix for the hernia and GERD, zyrtec

(allergies), and glyburide 2 x¡¦s per day for my diabetes, and

tetracycline for my rosacea. If it were not for Vocational Rehab

and my mother I would not be able to stay on these medications.

Combined they are over $700.00 per month. I wish there was help for

people who are unable to afford medications. It¡¦s shocking and

unbelievable that people who live in one of the richest country are

unable to afford healthcare.

Well, I hope that I didn¡¦t bore you to tears listening to my woes.

Thanks for having me here.

Leigh

[Guest guest]

Welcome to the Group

I'm Cloud , I have Cauda Equina Syndrome - non-operable , Spina bifia

Occulat (the two go hand in hand in my case) , Diabeties Type II ,

diet controlled so far only - knocks on my head (wood). Has that toe

nail fungus as well and had a toenail removed last month - what a

relief lol still have 4 toes to go to have temp removed. I walk on my

inner soles so I wear shoes out quick so most time is barefooting it

if I can get buy with it , dr fusses cause I'm diabetic - told'em i'm

so graceful that No matter what I do or don't ,something is bound to

occr any how.

Yesterday I was creeping round walmart and my right leg started

shaking and hurting like - bleep bleep bleep - and tried going out

from under me. Its still acting up . Nerve damage from the CES , which

to those that aren't aware of the CES - its the horse tail nerve sac

at the end of the spine , I have a malformed lower spine - birth

defect - and end results will be wheelchair - eventually . I creep

about with a cane but mostly when I know I'm gonna do alot of walking

, at home I don't use it ,figured I have enough furniture to grab if

needs to be.

I live with Chronic pain, some days are better than others but it can

change in a blink . So anytime you feel like venting - just hollar ,

and I or someone else will be more than happy to be your venting post

Cloud

[Guest guest]

Leigh-

Wow- you have been hit with a ton of bricks. I can remember when my

major health issue was a broken foot, which was when they diagnosed

me with high blood pressure. I started a class at the local hospital

for mindfullness meditation (GREAT CLASS). I was taking it for

stress, but a lot of the class were there for pain management - I

thought they were a bunch of wimps, cry babies...had no idea what

pain was. This was just six years ago. Little did I know that about

6 months after the class I would blow a disc in my back, and learned

what pain was (and is). Since then I have had kidney stones, heart

arrythmias, ruptured ovarian cysts (saved from the appendicitus which

was almost scheduled), carpal tunnel, nerve tumors in my median

nerve, endometriosis, ulcers, vertigo, skin cancer, etc, etc. Have

had a discektomy, 3 wrist surgeries, ovarian cyst surgery, kidney

stone surgery. Highlight was last year when I was told in a one week

period (shipped back and forth between Dr's for Vertigo) that I had

early cateracts, hearing loss and was in menopause (well, at least

that took care of the endometriosis). Still unrelenting back pain, I

am scheduled for a fusion in two weeks (spondylothesis, which took

almost 3 years to diagnose, finally showed up on MRI last fall).

Didn't mean to go on about me, but I realized what a jerk and

unsympathic I was --- fortuneately I was smart and kept my feelings

to myself. You might want to consider this mindefullness mediation,

it really helps - Don't have my book handy, but it is a famous

program out of Mass General - I will get more info if you are

interested.

Anyway, I am also a newbie - welcome to you !

Kris

[Guest guest]

Dear Cloud,

Thank you for writing. I'm very sorry to hear about all the pain you

are in. It really is awful that people have to suffer so much. My

foot Doctor mentioned that he might take one of my toe-nails but I

am against it. He seems to think that it can't be helped and that it

will continue turning sideways on me. It's really weird looking.

When my toe-nails first started going " funky " on me I remember

thinking to myself, " Oh, no! I have my grandmother's toe-nails and I

am only 34! " It was a funny moment. My grandmother was plagued by

funky toe-nails that were extremely hard to cut. We used to laugh

when I would cut them for her and they would litterally fly across

the room. I used to tell her that they were lethal little missiles!

Thank you for listening to my rants. It's really wonderful to have

found people who understand what I am going through.

Hugs to all,

Leigh

> Welcome to the Group

>

> I'm Cloud , I have Cauda Equina Syndrome - non-operable , Spina

bifia

> Occulat (the two go hand in hand in my case) , Diabeties Type II ,

> diet controlled so far only - knocks on my head (wood). Has that

toe

> nail fungus as well and had a toenail removed last month - what a

> relief lol still have 4 toes to go to have temp removed. I walk on

my

> inner soles so I wear shoes out quick so most time is barefooting

it

> if I can get buy with it , dr fusses cause I'm diabetic - told'em

i'm

> so graceful that No matter what I do or don't ,something is bound

to

> occr any how.

>

> Yesterday I was creeping round walmart and my right leg started

> shaking and hurting like - bleep bleep bleep - and tried going out

> from under me. Its still acting up . Nerve damage from the CES ,

which

> to those that aren't aware of the CES - its the horse tail nerve

sac

> at the end of the spine , I have a malformed lower spine - birth

> defect - and end results will be wheelchair - eventually . I creep

> about with a cane but mostly when I know I'm gonna do alot of

walking

> , at home I don't use it ,figured I have enough furniture to grab

if

> needs to be.

>

> I live with Chronic pain, some days are better than others but it

can

> change in a blink . So anytime you feel like venting - just

hollar ,

> and I or someone else will be more than happy to be your venting

post

>

> Cloud

[Guest guest]

Hi Kris!

Thanks for the welcome. Right back atcha. Whew! You sure have

been through a lot as well. Having all these problems sure makes a

person humble. I will have to check into the meditation class. It

sounds interesting. Sorry to hear that you have had to go through so

darn much.

Here's hoping that you have many pain free days!

Leigh

> Leigh-

>

> Wow- you have been hit with a ton of bricks. I can remember when

my

> major health issue was a broken foot, which was when they

diagnosed

> me with high blood pressure. I started a class at the local

hospital

> for mindfullness meditation (GREAT CLASS). I was taking it for

> stress, but a lot of the class were there for pain management - I

> thought they were a bunch of wimps, cry babies...had no idea what

> pain was. This was just six years ago. Little did I know that

about

> 6 months after the class I would blow a disc in my back, and

learned

> what pain was (and is). Since then I have had kidney stones,

heart

> arrythmias, ruptured ovarian cysts (saved from the appendicitus

which

> was almost scheduled), carpal tunnel, nerve tumors in my median

> nerve, endometriosis, ulcers, vertigo, skin cancer, etc, etc.

Have

> had a discektomy, 3 wrist surgeries, ovarian cyst surgery, kidney

> stone surgery. Highlight was last year when I was told in a one

week

> period (shipped back and forth between Dr's for Vertigo) that I

had

> early cateracts, hearing loss and was in menopause (well, at least

> that took care of the endometriosis). Still unrelenting back

pain, I

> am scheduled for a fusion in two weeks (spondylothesis, which took

> almost 3 years to diagnose, finally showed up on MRI last fall).

> Didn't mean to go on about me, but I realized what a jerk and

> unsympathic I was --- fortuneately I was smart and kept my

feelings

> to myself. You might want to consider this mindefullness

mediation,

> it really helps - Don't have my book handy, but it is a famous

> program out of Mass General - I will get more info if you are

> interested.

>

> Anyway, I am also a newbie - welcome to you !

>

> Kris