
Man receives constant pain signals from his brain - mmonihan
http://www.montgomerynews.com/articles/2014/09/23/ambler_gazette/news/doc5421ece83a718387735601.txt?viewmode=fullstory
======
bitsweet
My Father has suffered with full body RSD/CRPS like the patient in this
article. Even the slightest breeze can cause him excruciating pain. He has a
morphine pump in his abdomen that provides a constant drip of dilaudid on his
spine, its the only thing that lets him manage his pain.

There is some hope. Last year some scientists in Italy discovered a break
through treatment that has had good success...though only tested on patients
that have recently developed CRPS. The FDA is currently evaluating it for
treatment in the US. ([http://www.rsdhope.org/neridronate---new-medication-
for-crps...](http://www.rsdhope.org/neridronate---new-medication-for-
crps1.html))

~~~
themartorana
I ask this with all respect for the suffering your father goes through but I
am genuinely curious... Has he tried THC in any form (smoke a joint, pill
extract)? I have heard of great pain relief from other diseases, and wonder if
there would be any relief provided by medicinal marijuana?

~~~
chrisfosterelli
My Dad also has had CRPS for the last 10 years now, and treats it with THC
currently.

Initially, they weren't able to diagnose it due to the odd cause. Like the
article said, mostly this disease is caused by extreme trauma. My father's
case was when he cut himself and had to receive a Tetanus shot. About 5 hours
after the shot, he was back an the hospital with an arm swelled to twice the
size and it's been downhill since. He's actually been to a number of
universities for studies, as he's the first documented case to get it from a
shot I believe.

He's taken virtually all forms of THC to help, but the only way it is
manageable is in addition to the extremely heavy methadone dose and oxycontin
as well. Usually he relies on smoking, but pills are sometimes used.
Unfortunately, his THC use has increased to the point that's it's insanely
expensive and he rarely is thinking clearly any point in the day. It's had
long term effects on his mood as well, either from the pain or the heavy drug
use (it's hard to tell). He appreciates the THC because it's reduced his
dependency a little on the methadone and oxycontin, which were beginning to do
severe damage to his memory. It definitely wasn't a miracle cure though, but
it's seemed to help.

~~~
bitsweet
Thank you for sharing this.

After 10 years of being heavily medicated to handle the pain, my father too is
rarely thinking clearly and has a very poor short term memory.

------
ivanca
Since July 2012 I suffer something similar (not as bad as the guy in the
article thankfully); named "fibromyalgia", I get along with a couple of drugs,
one called Duloxetine and the other one is Modafinil (that last one is for
insomnia but one of the symptoms of my disease is being sleepy/tired all the
time). I'm a strange case because I'm a 25 years old male but most people with
the same illness are middle age women.

I don't think a cure is between our reach (some doctors don't even believe its
a real disease... just in case life doesn't suck enough with the disease
itself) but I'm trying to lead the creation of better treatments, and topical
pain-relieving in general.

~~~
byuu
One of the most intensely frustrating things to me about doctors is the way
they treat anyone explaining something not immediately diagnosable as though
the patients are pathological liars or hypochondriacs.

I don't care if there are a few people who fake conditions to get pain
medicines. That's no excuse for ignoring people with real problems. If someone
is coming to you who hasn't been to a doctor in five years, they're probably
not an opioid addict that is doctor hopping. Even in the rare case it really
is entirely psychosomatic, that's still something that should attempt to be
isolated and addressed.

I've had upper chest pains that feel like a 20lb weight is sitting on my chest
for the past several months. They come and go, usually staying for a few hours
at a time. Doesn't matter whether I am lying down, sitting or standing.
Doesn't matter what I've eaten, where I've been, etc. The exact spot always
seems to move around, sometimes it's two spots on each side of my chest at
once. Tried changing everything I reasonably could to no effect.

Can't get any doctors to acknowledge there's an issue. I'm just really hopeful
that whatever it is goes away, and isn't something serious like blocked
arteries or some form of cancer. I can't even imagine being in as much pain as
you and Justin and having doctors dismiss me as a liar. I'd absolutely lose
it.

~~~
kansface
There are penalties for giving out drugs to everyone who asks (potentially
jail); there are no penalties for not giving out drugs apart from feeling like
an asshole.

------
spain
I used to think that something like this wasn't possible. I always assumed
that if you were in constant pain or something you would somehow grow used to
it over time in the same way that being subjected to cold temperatures raises
the bodies resistance to cold temperatures.

Another example would be drugs and chemical receptors in the brain. Correct me
if I'm wrong but shouldn't it be the same as with drugs, the more pain you get
the more neurotransmitters are being used and the more are required to make a
stronger response? Shouldn't you then technically feel less pain over time if
it's constant?

~~~
throwaway91214
I suffer from chronic pain (pain 24/7, or at least when awake, varying degrees
from bad to terrible terrible pain) and have done for 10 years now.

To answer your question: no. I do know that my tolerance for pain is
significantly higher than most people. I still feel the constant pain from
when I wake up to when I fall asleep. Its a horrible thing. It affects my mind
when I am trying to write code just like it would your mind.

I have had all the best medical treatment possible. There is nothing they can
do, so I am voluntarily now off all opioids and other analgesics. I would
rather be in pain and have as clear a mind as possible that be high and in
less pain ... also the cycle of taking opioids -> tolerating them -> needing
them but not getting much benefit -> going off them -> withdrawal -> going
back on them ... is not pleasant.

The only way to "win" is to ignore it. To go on with life as if I was not in
so much agony. The moment people stop and give up, they are destined for a
life of being bed ridden, unemployment, hooked on drugs and even more pain
(less exercise, less social contact etc. leads to more pain).

Ignoring it takes an incredible amount of mental discipline.

Plenty of people with chronic pain end up bed ridden, unemployed and sometimes
suicide.

I have considered an electronic implant after my docs suggested it. For my
specific case its very much experimental. It would cost me a fortune with no
guarantee of success ... and always a chance of something bad happening. I
don't want to pay for the privilege of being the lab rat so the surgeon can
write a paper about me in a medical journal. I will wait and see how this tech
develops. When there is a 75% chance of it working I will go ahead. Until then
I would rather not have to sell my house.

(throwaway account)

~~~
silencio
> Ignoring it takes an incredible amount of mental discipline.

This is such an understatement. I don't have 24/7 pain but I have nerve pain
that is not very responsive to anything. I can live with the little twinges
but if my legs feel like they're on fire, I can barely focus on personal tasks
(eating, sleeping, showering, getting out of bed in the first place...) let
alone any work. I cannot even begin to imagine what I'd do if it was
significantly worse.

I live my life the best I can, but I find myself getting more and more angry,
leading to more pain, leading to more anger... there is not even an
experimental treatment for my problem, which I'd happily go for. It's only
pretty much taking whatever I can tolerate to take the edge off the worst pain
for a few hours at best (where it's meds like anticonvulsants and TCAs, not as
much opioid use), or something with a side effect that helps - getting really
high so I stop caring, or making me really sleepy so I can rest. Add CBT for
anger and whatever non-drug options are out there, and it's just workable
until this fixes itself eventually, hopefully.

~~~
throwaway91214
hang in there friend.

------
beggi
Donate here: [http://www.youcaring.com/medical-fundraiser/help-my-hero-
sco...](http://www.youcaring.com/medical-fundraiser/help-my-hero-score-his-
touchdown/237371)

------
mcphilip
My wife has a friend with CRPS here in Austin. She's just recently started a
new treatment involving ketamine. She wasn't put under for five days like
Justin, but did experience extreme mental disorientation accompanied by a few
weeks of pain relief.

Its amazing how she stays positive when the majority of her life is spent
alone, in pain, and with no cure in sight.

------
bumbledraven
I wonder if something like
[http://en.m.wikipedia.org/wiki/Gabapentin](http://en.m.wikipedia.org/wiki/Gabapentin)
would work better for this kind of neuropathic pain than opiates like
dilaudid?

[http://www.rsds.org/3/treatment/stacy_campbell_pregabalin_ga...](http://www.rsds.org/3/treatment/stacy_campbell_pregabalin_gabapentin.htm)

------
MrJagil
As a foreigner, how does the insurance industry deal with illnesses like this?
Bedridden for 9 years, with loads of heavy sedatives a day + whatever else
there might be of tests and whatnot... From the article, it seems the family
is entirely alone with this (apart from some potential community support).

~~~
michaelochurch
The answer is: don't get sick in the U.S.

 _Breaking Bad_ is accurate in terms of what happens when you're sick in this
country. (I don't know of any who became meth kingpins, but people doing
stupid stuff due to medical-cost desperation is common.) Health insurance
won't cover everything. It won't cover most things it's supposed to cover. Its
purpose is to collect premiums when you are young and healthy but when you are
sick or old it has no interest in serving you. You're just a problem customer
in their portfolio.

Also, if you get seriously ill in the U.S., the payment/insurance aspect of it
(and all the compromises you have to make to avoid unreasonable costs) will
often add PTSD into the recovery process. I know people who have been
essentially broken by the financial fallout (and the emotional drama around
abandonment or, if they landed in debt, being pursued) of a serious illness.
This is common, but few talk about it.

~~~
dllthomas
_" [W]hen you are sick or old it has no interest in serving you. You're just a
problem customer in their portfolio."_

Right, with two caveats. A big problem with relying on competition to get good
behaviour out of health insurers is that for health care in particular the
common pattern is that expenses are low, and then for some expenses get high
and stay high. As you say, this means that as soon as you need to actually
_use_ your insurance, you're a "problem customer" and - basic incentives wise
- they'd rather not have you as a customer any more. If they frustrate you
sufficiently that you say, "Screw this, I'm going to your competitor!" they
win - they keep all the money you paid in, and it's their competitor that
needs to pay out now.

The caveats.

First: employer based health care, as weird as it is, serves a role as
collective bargaining. Losing the sick person is good. Losing the sick person
and a couple thousand healthy people is bad (or at least less good).

The other caveat is the cap on the medical loss ratio in the ACA. If a company
is operating near the cap (and why wouldn't they be?) then the pool of money
available for executives and shareholders can depend more on total revenues
than on revenues minus medical costs. When that's true, losing any customer
hurts - even one that nets negative.

I don't think either of these is doing enough (the second might, long term,
but I'm not sure the industry has internalized it yet), but they help some.

~~~
kyllo
_First: employer based health care, as weird as it is, serves a role as
collective bargaining. Losing the sick person is good. Losing the sick person
and a couple thousand healthy people is bad (or at least less good)._

Except that many large employers are self-insured anyway, they only have an
insurance company contracted to administer claims, but the employer pays.

So, unfortunately the company then has an incentive not to employ sick people
and old people.

~~~
dllthomas
_" Except that many large employers are self-insured anyway"_

Many; it's not all, I'm not sure it's most, and the dynamic I spoke of is
still present in smaller employers.

 _" So, unfortunately the company then has an incentive not to employ sick
people and old people."_

I never claimed employer based coverage was a panacea. I explicitly called it
weird, and I specifically said that it doesn't entirely fix the issue.

------
stevedekorte
FWIW, I'm not a doctor but have read enough about Ketamine therapy to
recommend researching it if you or someone you know is suffering from a form
of chronic pain syndrome.

------
doctorstupid
How can one receive a signal from one's brain?

~~~
bitsweet
This video explains it well
[http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic...](http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain)

~~~
doctorstupid
The question was philosophical (and paradoxical) in nature, but thanks for the
link.

------
RevRal
"...the brain to send pain signals to the body..."

Is this wrong or am I missing something?

~~~
callesgg
It's not a scientific papper you probably get what they mean.

~~~
RevRal
Cool, just wanted to be sure.

------
andrew1601
I suggest the possiblity that this is a manifestation of TMS. Check out John
Sarno's The Mindbody Prescription.

~~~
lukestevens
Your suggestion is uninformed; and John Sarno's advice is pure quackery.
Please don't speculate like this on severe medical conditions.

~~~
cpncrunch
How much research have you done on this? If you dig into the research you will
see that Sarno's theory is the best explanation for these conditions. (I've
suffered from one of these conditions myself, and done extensive research).

~~~
lukestevens
I've been looking into these issues for over a decade. Sarno's theory is
psychobabble:
[http://en.wikipedia.org/wiki/Tension_myositis_syndrome](http://en.wikipedia.org/wiki/Tension_myositis_syndrome).

 _" The treatment protocol for TMS includes education, writing about emotional
issues, resumption of a normal lifestyle and, for some patients, support
meetings and/or psychotherapy"_

For general back pain, I wouldn't be surprised if this "treatment" involves
some very simple stress relief mechanism that relaxes muscles and reduces
muscular pain for some people, some of the time.

The theory, however, is nonsense, and you could just as easily substitute
"demons" and "exorcism" for "emotions" and psychotherapy" and get the same
results. "TMS" is a made up term with no science behind it, just wilful
speculation from a professional who should know better.

To suggest it has anything to do with the unremitting pain described in the OP
is deeply irresponsible. It's like suggesting homeopathy for cancer. In fact
it's probably worse, as it amounts to victim-blaming because the patient isn't
dealing with their "repressed" rage/emotions. Awful.

~~~
cpncrunch
It's not psychobabble. There is extensive evidence showing that stress and
depression result in pain, that FMS is triggered by stress, and that
psychosocial factors are important in recovery. The same is true for CFS and
IBS, which overlap with FMS.

And the pain isn't muscular in nature, it is neurological.

I've done extensive research into this area for 15 years, written a book about
it, and published research, as well as suffering from it myself (and
recovering).

Although I haven't digged very deeply into Sarno's theories, I can tell you
that from what you have posted above, it is right on the money. However it's
not simple 'stress relief' or 'relaxing muscles'. It's more to do with
rewiring your brain through changes in behaviour.

~~~
lukestevens
I'd be interested in your studies and book - can you share a link?

I follow the research. Psychosocial factors have been studied to death and
certainly aren't important for recovery, particularly given recovery is not a
particularly common outcome (for CFS/FM at least). (If only they were, it
would make recovery a lot easier.) They are, however, peddled by people giving
false hope to the vulnerable and desperate.

IMO your certainty about what is or isn't the cause of all those conditions is
certainly not justified. For example, how can you be so sure Sarno is "right
on the money" when you admit you haven't looked into it very deeply? And
Sarno's theory is very much about emotional release, that's the whole point.
Gotta get that repressed rage out.

~~~
cpncrunch
All the reviews show that CBT is moderately effective for CFS. Unfortunately
the effectiveness is quite modest, possibly due to the fact that CBT is based
on faulty assumptions.

I'm actually in the process of getting a paper ready for publishing which
gives an updated overall theory of the illness, plus a proposed treatment.
However because I've been busy working on my business, this has sat on the
back-burner for the last few months.

Also, there is so much hate out there for this kind of research that there is
no way I'm going to post my name here.

------
mattybrennan
Related to the guy who has 100 orgasms/day? [http://gawker.com/the-undeniable-
tragicomedy-of-a-man-orgasm...](http://gawker.com/the-undeniable-tragicomedy-
of-a-man-orgasming-100-times-1638083407)

Both seem pretty awful.

~~~
bitsweet
While this seems like a horrible affliction, I don't see how this is related.

