List of diagnosis - several other suspected but not posible to exam due to the E.D.S.
Background and development.
have had it for as long as I can remember, it is well controlled now.
The left lung is slightly atypical, and I have more pain from it than
the right lung. It feels like a giant hand that closes on the lung.
1990, I got what looked like an innocent little prolapsed disc,
between 4 and 5 lumbar vertebrae. Simple little thing, not many bad
symptoms, mostly fatigue in the back.
doctors had just gotten a newly emerged technique that was perfect
for my type of prolapse. It wouldn’t require anesthetic nor leave
any major scars.
“piece of cake” for the doctors to perform!
called a Percutaneous Discectomy. You enter from the side of the
disc with a small instrument, find the ill disc material and suck it
out. A very gentle operation. Compared to the old familiar type of
operation for slipped disc - yes - definitely! And all brand new to
surgery I could do what you`re “supposed to do” - my stomach was
working, my bladder was fine, I was, as I said - tired - in my back
and had some weird pain. Scans showed a small prolapse.
radiating pain or sensation down the legs, meaning it was a small
prolapse which was judged best to be removed right away before it got
and appropriate to solve with this new technique.
the procedure, I could walk, run, ride, run up and down stairs, play
handball, train acrobatics - I was used to a very, very active life.
came home with pain I had never suspected existed - my right leg
froze as if it had been placed in a freezer for many months and then
tried to put back to the warm, living human flesh again and sometimes
burned it completely in an absurd way. The left leg soon began to
have symptoms too.
after the operation - down in both legs it felt like there had been a
rubber band from the surgical site (knife) in the back and down to
both feet. A rubber band that tightened dramatically and the pain was
- overwhelming! And at the same time you could stick a needle in it
without me really feeling that at all!
could not climb stairs - I could barely move - and did not understand
the message from the surgeons - they had “touched the Sciatic Nerve
(from the Greek word “ischias” that means pelvis).”
that it probably would be much better after a few weeks!
I might just have to find a physiotherapist so I could learn to walk
properly and move again.
had some problems with stomach and bladder, especially I was now
incontinent. I could not feel when the bladder was full and the brain
was telling me that it now had to be emptied. And I could not empty
it without catheters.
called to talk to the surgeons about it, but there was no help
available! I was initially rejected but later examined numerous times
but no one found solutions or something that gave relief.
was one of the physiotherapists who called my doctor and complained
that the nerve injury should have been taken seriously and treated in
time, so the damage had been to treat.
I was referred to the urological clinic which started a very long
thorough investigation - which among other things, meant small
electrical “things” in all possible and impossible (!) places of
your body. The damage was found, recognized and treated.
is experienced through extrem pain - Even
sleep - I stop breathing.
of suspicion of sleep apnea I was examined by machines that record
activity during sleep.
I stop breathing because of pain. That made an impression on sleep
apnea center, so a CPAP mask was hurriedly sent back home with me. It
helps so my sleep has been a little better!
never a second without the pains and the temperature feels strange,
never the same all over the body. The body can never decide if it
freezes or burns from heat.
leg and foot is always frozen completely stiff and useless and feels
like I've stayed in a freezer, while the left leg and lower body
glows and burns like I was in a stream of molten lava. After two
hours of thorough relaxation and I am completely relaxed and resting,
once I breathe I want to scream about the pain the minimal movement
triggers! THAT is my basic-pain - my starting point.
additional things require great self-discipline to accomplish -
everything - all activity!
places the sciatic nerves come out from the spinal cord receive
continuously, without any pause, pain signals to the spinal cord of
acute injuries. All the time. Every second. Around the clock.
the back surgery in 1991, my brain is receiving signals that I either
have been run over by a train, that there is a saw in my back, or
other similar damage.
injury that gives atypical symptoms.
am very sensitive to vibration, shock and cold
consequence is that when I am in a car that has bad springs (in my
opinion, anyway) so there is a kind of further compression on my
spine “breaks down” – like a short due to overload, so I get
stronger cramps, a dramatic increase of the pain, a red mist before
my eyes, and I throw up, get seizures (the leg cramps can lead to
large seizures involving the whole body so I lie and only touch the
ground with heels and head, the rest of the body is stretched in an
arc as if I am a bridge! My whole body is strained. On
a few occasions I have had seizures that lasted 11 hours straight!
of the EDS damage to the attachments in my joints, the seizure
attacks make my joints hurt dramatically... I get countless small and
large muscle cramps like fiber bursts throughout the body. My hands,
especially my fingers will hurt and I can give serious bruising to
the merciful soul who will comfort and hold my hand during such an
dysfunction of the urinary bladder without spec.
surgery back in 1991 I had no idea what bladder problems were!
not think I've ever had more than a few innocent infections.
became incontinent during surgery. When you get a nerve injury in
your back as mine, automatically it will lead to a disturbance to the
message from a filled bladder that needs to be emptied goes to the
brain through the spine.
that signal system is ruined when the nerves are damaged like this.
addition to being incontinent, I had pain and cramps in the bladder.
started having to use disposable catheters. Also began to be aware of
major problems in the bladder region - pain, cramps, (I did not
suspect a bladder could - physically cramp!) It can and it hurts!
got all sorts of treatments for many years. Injections in the bladder
with Bacillus Calmette-Guerin (BCG) Vaccine (sometimes used for
bladder tumors or bladder cancer), different kinds of medication for
other things whose side effects could be to “bother” a bladder so
that it would repaired itself ... etc. etc. ... no positive, lasting
was given up on until two years and five months ago when I had sudden
strong bleedings from the bladder. The catheters stopped now and then
entirely! Then you bleed a lot! Pain level soared!
urges increased, both in number and in strength. Urge is when a
bladder is filled and they're told that it is filled and ready to be
emptied. Normal bladders can be ignored - who does not know to be a
place where you do not just find a toilet, and must wait. Then you
get a bit restless and jumps a little, steps with one foot, etc.
Urges in a diseased bladder can occur even just after emptying! Even
when the bladder is has just been emptied!
urges are approximately 40 times during a day. They have such
strength that I need to control myself not to turn my hands to the
abdomen, break down and scream uncontrollably. And is often so
violent that I get tears in my eyes, Goosebumps, shaking slightly
over my body, I feel my blood pressure rise, the pulse in the
temples, a pulsating headache, cold sweats, cramps in the lower body,
to spinal cord injury the message from the bladder to the brain is
works - nothing at all!
feels like a big open wound, every step I take hurts. Whole pelvic
area is tight; there are reactions to food and drinks
Interstitial cystitis / Painful bladder syndrome. (Interstitial
cystitis (commonly abbreviated to "IC") is
a urinary bladder disease of unknown cause characterized by pelvic
and intense bladder pain, urinary frequency (as often as every 10
minutes), pain with sexual intercourse, and often pain with
condition was determined after a biopsy. I was treated with
Gepan-instill first. No effect whatsoever! So, Dimethyl Sulfoxide
(DMSO) was also tried in the early 90s. No appreciable effect at the
time but eventually it is the only hope left. After the pressure
chamber there ARE changes - still big nasty side effects, but there
IS a little noticeable improvement, not just random changes, but a
weak, lasting change. Unfortunately, I tolerate it so bad one week
after intravesical instillation (treatments applied directly to the
bladder through a catheter); I am really, really ill.
bladder is like a big open wound due to corrosive damage in the
mucosa protective layer. So urine feels like acid in the open wound!
There are strong reactions to food and drink. Again exacerbated
symptoms because pain signals to the brain, combined with spinal cord
injury. Mucosal injury is one of EDSs characteristics, so the
longtime nerve disorder and connective tissue disease has probably
reinforced each other.
has bothered me a lot the last years, and the condition has drained
me of my inner resources.
“inner drive” which is what makes the motivation to continue and
what continues for you to have the spark and energy is getting very
hard to maintain.
was born with a defect in my genes in my collagen tissue. It sounds
like a very innocent matter - it's probably something with premature
wrinkles and sagging skin, you think - until you realize that the
whole body is composed of collagen tissue. All tissue, all veins,
organs, muscles, joints, eyes, ears, mucous membranes, pleura,
bladder.... etc. etc. etc.!
suffered a lot of twisted joints and weird injuries in my childhood;
doctors' response was always it must be something you will grow out
of - a kind of “growing pains”
did not, then after my first education (which was zookeeper, animal
trainer) and the first years of very hard physical work at the zoo,
animal hospital, etc. I had to look around for another education that
was - craftsman! I conceived the same love and passion for the
subject as I have for working with animals.
I wasn’t aware of the rare connective tissue disease so it was very
hard and caused difficulty especially for my hands, arms, neck and
fingers - a lot of overuse injuries occurred
am the hypermobile type of EDS.
all my joints are damaged and in much pain.
have cartilage damage, degeneration throughout the body. A lifelong
affair with unexplained pain all over the body stopped when I got the
was like a big puzzle with thousands of pieces fell into place!
and large pieces as for instance why I cannot go to the dentist and
be sure that the anesthesia is working or an understanding of why for
instance ulcers, are so slow to heal - etc. etc...
you have traditionally called growing pains now there suddenly was a
very reasonable explanation! A great relief and help to have the
diagnosis, especially since there are things it is wise to prevent
and take care of!
longstanding / chronic nonaligned pain.
as a burden for many years gives stress. Lack of peace and quiet,
rest and sleep.
being stretched max up in pain level is like being under attack
I have been told from several specialists that I have great mental
resources such as I (before I got this information!) without knowing
it, started to develop different strategies to cope with pain.
large hole in the nasal septum
of EDS - the destruction of the nasal septum.
of the nasal septum’s function is that it heats and adjusts the air
we breathe to fit the body temperature. Some years ago mine became so
destroyed that I now have a big hole in the middle of it. It is too
big for any kind of operation. So the air I breathe is so maladapted
and bothers me a lot. Wind, icy cold air and moisture are painful to
breathe. And has given rise to a myriad of infections and pneumonia
in recent years.
Ulcers in the gastrointestinal mucous membrane - in the entire gastrointestinal-intestinal tract. extremely painful. allows many problems to withstand all kinds of food. provides many daily symptoms, bloody vomit etc. not good when you have EDS and trouble in stopping bleeding!
One of the frequent, most exhausting things is starting with a
respiratory infection. Get medication for it, I'll usually have
prolonged medication period, then I get bad stomach, and then urinary
tract infection is almost completely sure! And the last times I have
it, in just a few hours I have the infection almost exploding up into
to both kidneys - it can take months to kill and it takes longer to
get my strength back - and so have I seen it all starts again! !
Maybe just because I have stayed somewhere - a store, a railway
station’s waiting room, a concert hall or a cinema or other places
where many people are gathered and there is just one with an
is frustrating and has happened far too many times - it takes
strength I no longer have, so the last almost three years I have
consistently had to avoid such places, and really be careful where I
has greatly reduced the number of infections, but with major social
implications ... so I have REALLY tried to find solutions that would
eliminate the “open door” my nose has become
are all kinds of masks and respirators but are all very uncomfortable
to wear due to moisture, warmth and more). And none so stable and
safe that I can trust it!
There are many more diagnosis, this was just the most important or "the loudest"!