I am so glad that I
found this site to share my problem,
hoping that I would find someone that
might have had similar things (not hoping
somebody else has it .
A dozen doctors haven been stumped by my
rare skin/nerve condition for the last
four years. I have searched far and wide
and have asked hundred of people. I could
not even get a sure diagnosis of it. No
second person has had it or heard about
it.
Symptoms –
· My thigh and butt skins burn and sting
when sitting down and under pressure. The
pain goes away as soon as the pressure is
relieved when I stand up.
· The skin is very sensitive. Can’t
even bear clothes seams or even the
“peach fuzz” on the surface of fabric.
Likes smooth and hard surface.
· No rashes or visible physical signs on
the thigh and butt skin. No loss of
strength. No impact on any other physical
activities. Very rarely, I felt and itch
on the skin and when I scratch, some bumps
appeared and went away quickly.
· Did have redness under pressure and
dermatography, but that has been largely
gone for a couple of years.
· No particular food or situation that
made it worse.
Diagnosis and Treatment –
· Have seen three neurologists. All tests
are fine. None of the treatment worked.
· Have seen dermatologist and allergist.
None of the treatment worked.
· The closest thing is Pressure Urticaria
according to the allergist. But, the
symptoms do not match up. His last
prescription is “to pray” and I have
been doing that.
Other related information
· I have searched far and wide and talked
to hundreds of people. No second person
has it or has heard about something
similar. This is the most surprising.
· I had stopped taking aspirin for my
migraine after I read that it may trigger
pressure urticaria. It has not changed
anything.
· I work for an Aluminum Company, but I
rarely get in touch with aluminum.
· I travel a lot in my job and this has
been really debilitating in sitting.
· After four years, I am thinking that it
is a strange cross between dermatology and
neuro.
· It has not improved much, it is just I
have learned how to cope with and tolerate
it.
· I have also talked and asked my medical
insurance company and they are of no
help.
Has anybody experienced similar things?
Your help is greatly appreciated.
Regards,
Hong
|
MandMs
Extremely EHEALTHy
Joined: 26 Jan 2007 Posts: 1980 Location: Strumica, Macedonia
Thanks: 30
Thanked:10
Hi, Hong! Posted: 05-16-08 05:52am
Do you find your symptoms to be most
prominent at the outside of your hip and
thigh?
Are you getting pain, burning and tingling
sensations along the outside of the thigh,
usually accompanied by a burning numbness
in the skin?
Have you noticed that light touch is more
painful than deep pressure?
What you described below (copied from your
post) are exactly the fine details of my
symptoms, most prominent at the edges of
the area under pressure, particularly
under the thigh at the front edge. It
seems it is always the worse in the
transition zone from pressured to
un-pressured or less pressured areas,
which is why I have to wear smooth cloth
and sit on smooth and hard surface. The
burning numbness sensation has also been
getting more prominent and I get it down
my legs to my foot. I have to stand up and
walk around as much as I can. Since I do
stand a lot, my feet and heels are also
hurting. Not so much that lighter touch is
more painful, but I do notice that as long
as there is any pressure difference, I get
the worst pain in the pressure transition
region.
I am so delighted
to get a reply and I am so thankful that I
finally found someone that understands my
debilitating problem so well.
I have not found any other posts from you
on the same subject. Maybe I did not know
where to look in the ehealth forum. Can
you point it out to me or post to me any
help you can offer.
A million thanks!!!
Hong
|
MandMs
Extremely EHEALTHy
Joined: 26 Jan 2007 Posts: 1980 Location: Strumica, Macedonia
Thanks: 30
Thanked:10
Posted: 05-19-08 03:46am
You are welcome "more than a million
times", as much as I can be of help!
I don't have anything similar written on
other topics, so, that's why you couldn't
find it!
I was reading and leaving your post
unanswered for days, but I decided not to
skip it for one more time.
I'm very glad you are happy for my reply
and I'll be happier if your problem is
diagnosed finally.
Do you get these symptoms on one leg
only?
Is the burning sensation usually becoming
intolerable?
Do you get dull pain in the groin area or
across your buttocks less commonly?
Do you find changes in posture or
prolonged sitting or standing may cause a
fluctuation of symptoms (the discomfort
may resolve spontaneously and reappear)?
Have you noticed that warm water from
shower feels like it is burning the area?
Does extending the thigh posteriorly
reproduce or worsen the tingling and
burning sensation?
Best wishes!
Marija
|
hlhg
New User, Becoming EHEALTHy
Joined: 29 Apr 2008 Posts: 6
Thanks: 0
Thanked:1
Skin Hypersensitivity Posted: 05-19-08 10:56am
Thanks for your kindness and your
patience. I feel like that you are the
God has sent in
answering my prayers. Below are my answers
to your questions:
(MandMs) Do you get these symptoms on one
leg only?
(Hong) both legs or where ever is under
pressure.
(MandMs) Is the burning sensation usually
becoming intolerable?
(Hong) The pains worsens and becomes very
intolerable if I sit still in a position
for a while (30 minutes), do not move or
wriggle around in my seat or without
standing up to relieve the pressure.
(MandMs) Do you get dull pain in the groin
area or across your buttocks less
commonly?
(Hong) Pain is the most prominent in the
thigh area at the front edge of pressured
area. In comparison, the groin region
feels less pain.
(MandMs) Do you find changes in posture or
prolonged sitting or standing may cause a
fluctuation of symptoms (the discomfort
may resolve spontaneously and reappear)?
(Hong) The pain goes away with pressure. I
therefore have to change my postures or
wriggle around frequently in my seat to
relieve the pressure and the pain. Not
sure if this is what you meant by
fluctuation. The only problem of standing
is my feet and heels start to hurt if I
stand still without moving for a while.
(MandMs) Have you noticed that warm water
from shower feels like it is burning the
area?
(Hong) no really.
(MandMs) Does extending the thigh
posteriorly reproduce or worsen the
tingling and burning sensation?
(Hong) Do not quite understand what you
mean here. My pain goes away as soon as
pressure is taken off or is lessened if I
can reduce the pressure. I do try to sit
with as much thigh area under pressure as
possible so the pressure per unit area is
reduced. It may help a bit temporarily,
but I still have to move around frequently
in my sitting position.
Hong
|
MandMs
Extremely EHEALTHy
Joined: 26 Jan 2007 Posts: 1980 Location: Strumica, Macedonia
Thanks: 30
Thanked:10
Hi, Hong! Posted: 06-03-08 04:54am
Sorry I haven't written to you for a long
period!
Thank you very much for the kind words.
Were the symptoms preceded with a motor
vehicle accident, surgery, weight loss and
obesity, or body weakness?
Do you have some other medical problems,
like diabetes?
Can you check if putting pressure in your
groin area may elicit tenderness or
exacerbate the symptoms?
Have a good day!
Marija
|
hlhg
New User, Becoming EHEALTHy
Joined: 29 Apr 2008 Posts: 6
Thanks: 0
Thanked:1
Pressure Urticaria Posted: 06-03-08 09:50am
Dear Marija,
Not a problem. Being in medical school and
a mom of a 3 year old is not easy.
Appreciate it even more that you provide
so much support on ehealth. Saw in the
news that you have just had an election.
I would say no to all of the following
questions. I am in excellent health and do
not have diabetes, although my father has
had a mild one for over 15 years. He is
now 78 and his diabetes is still very mild
and well under control. His mother died
from diabetes although that was almost 50
years. They basically did not know what it
was and exacerbated it by giving her more
sugar. Sugar was a scarce and luxury item
in those days in China. Other than this
pressure problem, I am pretty much free of
any other problems (one problem - insomnia
when I travel). I play sports and my
mobility and strength are not impacted a
bit. My knees are weaker. That comes with
age.
Thanks!
Regards,
Hong
Were the symptoms preceded with a motor
vehicle accident, surgery, weight loss and
obesity, or body weakness?
Do you have some other medical problems,
like diabetes?
Can you check if putting pressure in your
groin area may elicit tenderness or
exacerbate the symptoms?
|
MandMs
Extremely EHEALTHy
Joined: 26 Jan 2007 Posts: 1980 Location: Strumica, Macedonia
Thanks: 30
Thanked:10
Dear Hong! Posted: 06-09-08 04:48am
You are welcome!
I have suspected that you may suffer from
condition called Meralgia paresthetica
(thigh pain).
It's a painful mononeuropathy of the
lateral femoral cutaneous nerve (this
nerve is responsible for the sensation of
the anterolateral thigh), commonly due to
focal entrapment of this nerve as it
passes through the inguinal ligament. It
can be also caused by direct trauma,
stretch injury, or ischemia (lack of
blood).
In most cases, symptoms are one sided,
but, there are cases of both sides being
affected.
I'll suggest you to visit a neurologist
(the diagnosis can be confirmed by nerve
conduction studies) or an orthopedist, and
talk with them about possibilities of
having these condition.
Waiting for your post!
Marija
|
hlhg
New User, Becoming EHEALTHy
Joined: 29 Apr 2008 Posts: 6
Thanks: 0
Thanked:1
Skin Hypersensitivity Posted: 06-09-08 12:23pm
Dear Marija,
I have tried three neurologists including
a neurology professor at University of
California at Los Angeles although not an
orthopedist yet. What you said makes
sense. I will take your recommendation and
talk with my family physician, my
neurologist and an orthopedist. If nothing
else, at least eliminate some
possibilities. I will let you know.
In the meantime, do you have any
suggestions on insomnia when I am
traveling. I sleep soundly at home for at
least 8 hours a night. But I developed
this fear of not being able to sleep when
I am traveling a year ago and it has
really been a nuisance. I sleep a short 4
hours a night and thus can not be very
efficient. I am traveling in two days and
that fear or that pink elephant is already
creeping in.
Thanks.
Regards,
Hong
You are welcome!
I have suspected that you may suffer from
condition called Meralgia paresthetica
(thigh pain).
It's a painful mononeuropathy of the
lateral femoral cutaneous nerve (this
nerve is responsible for the sensation of
the anterolateral thigh), commonly due to
focal entrapment of this nerve as it
passes through the inguinal ligament. It
can be also caused by direct trauma,
stretch injury, or ischemia (lack of
blood).
In most cases, symptoms are one sided,
but, there are cases of both sides being
affected.
I'll suggest you to visit a neurologist
(the diagnosis can be confirmed by nerve
conduction studies) or an orthopedist, and
talk with them about possibilities of
having these condition.
Waiting for your post!
Marija
|
MandMs
Extremely EHEALTHy
Joined: 26 Jan 2007 Posts: 1980 Location: Strumica, Macedonia
Thanks: 30
Thanked:10
Hello! Posted: 07-07-08 13:36pm
Have you visited a doctor already?
Do you suffer from insomnia only before
traveling?
Do you usually worry excessively about
sleep and the effects of sleep (being
tired next day due to lack of sleep)?
Have you felt increased agitation and
tension as bedtime approaches?
Is the tension and worrying about sleep
increasing through the night?
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Schizophreniahealth
This page was last updated on June 11, 2008
that I
found this site to share my problem,
hoping that I would find someone that
might have had similar things (not hoping
somebody else has it 
.
I am so delighted
to get a reply and I am so thankful that I
finally found someone that understands my
debilitating problem so well.
God has sent in
answering my prayers. Below are my answers
to your questions:
