----- Original Message -----

From: Jeffrey S Johnson

To: Arachnoiditis@yahoogroups.com

Sent: Wednesday, July 02, 2003 10:20 AM

Subject: Re: [Arachnoiditis] New to Group

Hi Kathie,  

You may have Arachnoiditis along with other nerve irritation problems. 
The Arachnoid membrane covers the brain and spinal cord, I feel it most
in my thoracic spine where it always hurts and feels like it's out of
place or something but there is nothing that can be seen or nothing to
fix with an operation.   My back on the whole is in very fine shape, no
bad disks, no bone problems, most orthopedic Doctors I see say my back
looks perfect and don't know why I'm in pain all the time.  My pain
symptoms came on over the span of about a year till it reached it's peak
about 9 years ago.  The pain level goes up and down but it's always there
and always just enough to prevent me from enjoying much, this morning
it's really high and it's difficult to type this.  Hard to believe I can
have this much pain and nothing can be seen or done to fix it but I am
going in for a MRI this fall in a new style machine that lets you stand
up instead of laying down, might show something new?  

I'm quite befuddled with this pain, it came on without reason, I had no
injury and was quite active as the pain increased.  After several years
of searching for the reason I went to an infectious disease doctor and he
found I had Lyme disease right away so I went on I.V. therapy. It took 3
years of that to kick the Lyme disease and I felt somewhat better over
all but still have this pain all the time.  I had been bitten by a Deer
tick about 15 years before and never thought about it being Lyme but once
I started to learn about it I remember the big rash I had on my left leg
after the bite.  Any way I should have gotten treated right when it
happened and since I waited so long the Lyme had a change to really set
in and perhaps become more of a problem with my nerve system and may even
be the reason for Arach. problems.  I have quite a bit of neuropathic
pain in my legs and arms too, feels like I'm bruised all over.  I take
Neurontin for that pain with very good results.

Arachnoiditis can be caused by other spine treatments like mylograms and
injections of which I've had several so who knows, sometimes the tests
and treatments are worse than the original problem.   I also have a
chronic brain fog type feeling that makes it difficult to speak in a
normal manor, I get hung up mid sentence. I use to think it was from the
meds but now I'm off the ones that would cause that so I don't know, at
least I don't have headaches and I can still walk and get around okay.
I'm quite a bit better now than I was even one year ago, the pain is
still just as bad but I don't feel as stiff and frozen as I use to,
probably because the Lyme disease is under control.  Perhaps in time the
grip of pain will begin to weaken as well.

The catch is even if you do have Arachnoiditis there's very little that
can be done about it, I even tried a drug injection pump with hopes of
getting an implant that would inject pain drugs right in the spine but
the trial doses didn't help enough to make the implant worth the bother.
Oxycotin helps at times but I don't like the side effects so most of the
time I just take Vicodin and put up with the worst flare ups by laying
still and waiting it out.   Something new over the past year is I get
spans of time where the pain will almost go away completely for several
days and give me a break plus a bit of hope.  I keep looking for a
pattern or something to find what it is that causes the pain to reduce
but I can't see any reason for it, not weather, food, activity, rest, I
just don't know.  I also can't seem to find any reason the pain gets
worse on some days and have stopped trying to figure it all out, just
accept the fact I have pain and leave it at that.  I'm so very tired of
people telling me what they think it is or some new tea or food that will
make it all better, "Drink this...  Eat that..." there's no end and none
of it does anything.  At one point my wife even wanted me to try Bee
Sting Therapy, let bee's sting me and the pain will go away??  My doctor
say's "Stay away from the weird!"  Many people have chronic pain, not
very pleasant but that's what it is "chronic pain" might go away someday
or might not  I just try to live with it the best way I can and continue
to pay attention to it, what works and what won't.  I've found staying as
physically active as possible is the best thing.

Arachnoiditis is a very different type of back pain than most people
understand, most back pain is either from the bones, joints or muscle
pain and most treatments for back pain are for that type of pain.  I
believe with Arachnoiditis the nerve stems from the spine can't move as
easy as they should, like they are all sticky so the pain is mostly from
the nerves not joints or muscles.  It also may not be seen in any tests
or scans so can be diagnosed by symptoms alone, some doctors may disagree
with the diagnosis unless it's supported with test results but since
nothing can be done about it anyway it really doesn't matter.   I have
been diagnosed with several things like Fibromyalga and Chronic Fatigue
Syndrome ect. but really Arachnoiditis is the most accurate for my
condition.  Other symptoms like fatigue and neuropathic pain can be due
to being in chronic back pain all the time.  Chronic pain can cause an
overall feeling of weakness and depression no matter what the source,
it's just pain. 

On my worst days I just lay down, try to get as comfortable as I can and
either watch an old movie or read a book, usually in 2 or 3 days the pain
starts to go away and I get up for a while and see how I do. If it comes
back strong within a few hours I lay back down and wait some more, if I'm
doing okay I try to remain active by walking or riding my bike.  There
are very few days that I feel well enough to stay active with a static
task like standing still for long periods or sitting straight up for long
periods of time, I always start to feel like I'm being crushed by a heavy
weight on my shoulders which also causes muscle pain in my back.  This
type of pain can be relieved by getting up and walking around for a few
minutes but it really limits my ability to get anything done.  I enjoy
photography, model ship building and ham radio but they all require me to
sit still or stand for long periods of time, they all add to my pain
level.  It's most frustrating to have a desire to do something I like to
do but know it will cause great pain if I do it.

Have a good day,  Jeff Johnson

n Wed, 02 Jul 2003 08:25:42 -0000 "Kathie Ribblett"
<kathie@...> writes:
> Hi my name is Kathie. I don't know if I suffer from Arachnoiditis but
>
> from everything I have read I am beginning to believe that I too
> suffer from Arachnoiditis. Let me tell you a little about my medical
>
> history and maybe someone on the group can tell me if I fit into
> this
> catagory or not.
>
> I have had 7 back surgeries, 2 laminectomies & 4 fusions. I am fused
>
> at levels L4, L5, L6 and S1 with 4 Rays cages, 2 plates and 8
> pedicle
> screws. I have also had 3 attempts at a spinal cord stimulator that
>
> did not work. I have had numerous epidural steroid injections,
> trigger point injections and every test known to man done to me.
>
> A little over a year ago I re-injured my back and was in more pain
> than I had been in for a very long time. My doctor thought that
> giving me a trigger point injection would help ease my pain. Due to
>
> all of the scar tissue that I have my doctor had to put all of his
> body weight into inserting the needle into my lower back. Shortly
> after the injections were completed I began to get a tremendous
> headache. By the next day I was unable to sit or stand without
> feeling like my head was going to explode. I called my doctor and he
>
> ordered an MRI. The MRI didn't show anything so I was sent home. My
>
> headache continued to intensify with time so once again I called my
>
> doctor. This time he ordered an EMG. The doctor that did my EMG
> could
> not get a clear view of my spinal cord due to all of the bone growth
>
> that I have from my fusions. The was able to see a pocket of fluid
> to
> the left of my spine but he couldn't say if it was from my spinal
> cord or not. To be on the safe side I was given a blood patch. By
> the
> next day my headache was more bearable. After a few days my headache
>
> was completely gone but the pain in my back and legs was just as
> intense as it ever was.
>
> I have pain that starts at the base of my head and stops at the tips
>
> of my toes. My legs feel like they are on fire and I have shooting
> pain down both legs. I am unable to turn my head to its full extent
>
> on either side. I have pain in the thoracic area of my back that
> feels like I have been lifting weights at the gym for longer than I
>
> should have. The pain the lumbar area of my back feels like someone
>
> is squeezing that area so hard that I can't breathe. I also have
> pain
> in my right shoulder that causes me to loose the feeling in my right
>
> hand. There are a lot of other aches and pains in my back and body
> that are too numerous to count.
>
> Now for the big question. Do my pain "symptoms" sound like
> Arachnoiditis to anyone on this group???
>
> Thank you for any help and information that is offered.
>
> Sincerely,
> Kathie
>
>
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