8 ms·

Man receives constant pain signals from his brain

81 points by mmonihan 12y ago

bitsweet 12y ago
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-crps1.html http://www.rsdhope.org/neridronate---new-medication-for-crps...)
- themartorana 12y ago
  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?
  - WalterSear 12y ago
    I have been diagnosed with chronic pain syndrome, a related or possibly the same disease (there's little science to go on for either condition). THC is fine and good and generally more useful than opioids, but it's no panacea. It just takes the edge off more than anything.
  - bitsweet 12y ago
    He hasn't it tried yet.
  - chrisfosterelli 12y ago
    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 12y ago
      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.
    - Alex3917 12y ago
      Why doesn't he just juice the raw plants for the THCA? I doubt the THC actually has any significant benefit, and then he wouldn't have nearly as much of the mental fog.
- arjie 12y ago
  With all due respect, I have a question. Where does the pain come 'from'? Like, if we hurt ourselves, the pain comes from _that_ place. When it hurts, does it hurt _from_ a place or just a general feeling of pain over the whole body?
  - bitsweet 12y ago
    It started in a limb (right forearm where he had trauma from a routine surgery). For many people with RSD/CRPS it doesn't spread. Interestingly people used to go as far as amputating the painful limb but phantom pain remained. For a small percentage of people, it spreads over the entire body. They call this Full Body RSD. My father has this so his pain is everywhere but most often it is in his extremities. At it's lowest pain levels he says it feels like the worse sunburn he ever had. At his most painful moments he describes it like being stabbed with knives. This TEDx talk by Dr. Krane (he works with children with RSD/CRPS) describes the disorder and where the pain comes about half-way through http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain?language=en http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic...
    - arjie 12y ago
      Thank you for the description and the link.
  - bigtunacan 12y ago
    My first thought as someone who has high comorbidity of autoimmune diseases is that this sounds like extremely severe neuropathic pain. Since I wasn't familiar with CRPS I did a quick search for it and found this article http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystro... A search for autoimmune on that page turns up this nugget, "CRPS is more common in individuals with other inflammatory and autoimmune conditions such as asthma." Seeing as how it is a rare disease very little research is going to go towards this, so I'm just throwing out some conjecture that CRPS is likely an autoimmune disease itself. Autoimmune diseases often cause neuropathic pain. Link below provides some details, a quick excerpt though is provided here. "Neuropathic pain is distinguished from other pain conditions where the pain generator begins with disease of nonneural tissues. These nonneuropathic pain entities are said to be nociceptive and include conditions such as osteoarthitis and inflammatory pain." Now to put it in layman's terms from a patient that doesn't understand the medical condition (me); the pain comes from my nerves/brain not working right. I'm nowhere near as bad as the guy in this article; I am highly functioning on a day to day basis, but still have to use benzodiazepines in conjunction with opiates. As I understand it the former helps to slow down the overreaction of messages going between the nerves and brain, while the latter helps to take the "edge" off from the constant pain that remains. The pain can come from anywhere and everywhere. I really feel for this guy; on a real bad day the pain has gotten so bad I can barely get out of bed and move. On the rare occasion that happens I double up on the drugs and sleep it off. Sounds like this guy is suffering times 1000 on a daily basis what I am on my worst days. That's some seriously awful shit. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810425/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810425/
MrJagil 12y ago
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).
- themartorana 12y ago
  If "Obamacare" did nothing else right, it ended the idea of lifetime maximum output by the insurance company, but it has just taken effect. This story is one where they were likely dropped from insurance after they reached their plan's maximum output and they're now left to fend for themselves.
- alphydan 12y ago
  << After nine years of doctor visits, operations, a lengthy trip to Mexico and a lawsuit filed against various hospitals for alleged medical malpractice, Joan says she and Rick have spent roughly $600,000 in search of relief for Justin. >>
- michaelochurch 12y ago
  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.
  - plaguuuuuu 12y ago
    It's comparable to living in a third-world country. In the eyes of someone from a country with universal healthcare it beggars belief that people actually want to live in the US. It just looks like you're all boiling like frogs with no real understanding that your situation is abnormal even by the standards of many developing countries.
beggi 12y ago
Donate here: http://www.youcaring.com/medical-fundraiser/help-my-hero-score-his-touchdown/237371 http://www.youcaring.com/medical-fundraiser/help-my-hero-sco...
spain 12y ago
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?
- callesgg 12y ago
  I have always thought exactly that to. On a side note when I have been in major pain at some time I am have atleast been partialy capeble of consiusly ignoring the pain, it still hurts but i just try not to care. Obviously the pain that I have been able to do that with is no were near the pain we are talking about here.
- isopod 12y ago
  That's the funny thing about assumptions... In truth, what can happen is exactly the opposite: constant firing of pain signals can end up recruiting _more_ cells to transmit pain, thereby lowering the threshold need to signal pain, and amplifying the effect overall. cf. http://en.wikipedia.org/wiki/Chronic_pain#Pathophysiology http://en.wikipedia.org/wiki/Chronic_pain#Pathophysiology
- throwaway91214 12y ago
  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)
andrew1601 12y ago
I suggest the possiblity that this is a manifestation of TMS. Check out John Sarno's The Mindbody Prescription.
- cpncrunch 12y ago
  Everything I have read about CRPS suggests that it is essentially the same as FMS, i.e. a psychosomatic pain disorder caused by stress. The unexplained weight loss experienced by the patient in this article would also be consistent with this.
  - tptacek 12y ago
    What unexplained weight loss? He was diagnosed with a bacterial infection at the Mayo Clinic.
    - cpncrunch 12y ago
      Stress is likely one of the main causes of SIBO.
- lukestevens 12y ago
  Your suggestion is uninformed; and John Sarno's advice is pure quackery. Please don't speculate like this on severe medical conditions.
  - cpncrunch 12y ago
    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 12y ago
      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.
RevRal 12y ago
"...the brain to send pain signals to the body..." Is this wrong or am I missing something?
- callesgg 12y ago
  It's not a scientific papper you probably get what they mean.
  - RevRal 12y ago
    Cool, just wanted to be sure.
- dghughes 12y ago
  Instead of the other way, probably just a typo. From what I understand, not sure if correct, the spine has a weird role. If you touch a hot stove with your hand you instinctively jerk your hand back but there is a small delay until your brain gets it and thinks "hey that's hot!"
mcphilip 12y ago
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.
mattybrennan 12y ago
Related to the guy who has 100 orgasms/day? http://gawker.com/the-undeniable-tragicomedy-of-a-man-orgasming-100-times-1638083407 http://gawker.com/the-undeniable-tragicomedy-of-a-man-orgasm... Both seem pretty awful.
- bitsweet 12y ago
  While this seems like a horrible affliction, I don't see how this is related.
bumbledraven 12y ago
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_gabapentin.htm http://www.rsds.org/3/treatment/stacy_campbell_pregabalin_ga...
ivanca 12y ago
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 12y ago
  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 12y ago
    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.
- 12y ago
doctorstupid 12y ago
How can one receive a signal from one's brain?
- bitsweet 12y ago
  This video explains it well http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic...
  - doctorstupid 12y ago
    The question was philosophical (and paradoxical) in nature, but thanks for the link.
stevedekorte 12y ago
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.

81 points by mmonihan 12y ago

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-crps1.html http://www.rsdhope.org/neridronate---new-medication-for-crps...)

themartorana 12y ago
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?
- WalterSear 12y ago
  I have been diagnosed with chronic pain syndrome, a related or possibly the same disease (there's little science to go on for either condition). THC is fine and good and generally more useful than opioids, but it's no panacea. It just takes the edge off more than anything.
- bitsweet 12y ago
  He hasn't it tried yet.
- chrisfosterelli 12y ago
  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 12y ago
    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.
  - Alex3917 12y ago
    Why doesn't he just juice the raw plants for the THCA? I doubt the THC actually has any significant benefit, and then he wouldn't have nearly as much of the mental fog.
arjie 12y ago
With all due respect, I have a question. Where does the pain come 'from'? Like, if we hurt ourselves, the pain comes from _that_ place. When it hurts, does it hurt _from_ a place or just a general feeling of pain over the whole body?
- bitsweet 12y ago
  It started in a limb (right forearm where he had trauma from a routine surgery). For many people with RSD/CRPS it doesn't spread. Interestingly people used to go as far as amputating the painful limb but phantom pain remained. For a small percentage of people, it spreads over the entire body. They call this Full Body RSD. My father has this so his pain is everywhere but most often it is in his extremities. At it's lowest pain levels he says it feels like the worse sunburn he ever had. At his most painful moments he describes it like being stabbed with knives. This TEDx talk by Dr. Krane (he works with children with RSD/CRPS) describes the disorder and where the pain comes about half-way through http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain?language=en http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic...
  - arjie 12y ago
    Thank you for the description and the link.
- bigtunacan 12y ago
  My first thought as someone who has high comorbidity of autoimmune diseases is that this sounds like extremely severe neuropathic pain. Since I wasn't familiar with CRPS I did a quick search for it and found this article http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystro... A search for autoimmune on that page turns up this nugget, "CRPS is more common in individuals with other inflammatory and autoimmune conditions such as asthma." Seeing as how it is a rare disease very little research is going to go towards this, so I'm just throwing out some conjecture that CRPS is likely an autoimmune disease itself. Autoimmune diseases often cause neuropathic pain. Link below provides some details, a quick excerpt though is provided here. "Neuropathic pain is distinguished from other pain conditions where the pain generator begins with disease of nonneural tissues. These nonneuropathic pain entities are said to be nociceptive and include conditions such as osteoarthitis and inflammatory pain." Now to put it in layman's terms from a patient that doesn't understand the medical condition (me); the pain comes from my nerves/brain not working right. I'm nowhere near as bad as the guy in this article; I am highly functioning on a day to day basis, but still have to use benzodiazepines in conjunction with opiates. As I understand it the former helps to slow down the overreaction of messages going between the nerves and brain, while the latter helps to take the "edge" off from the constant pain that remains. The pain can come from anywhere and everywhere. I really feel for this guy; on a real bad day the pain has gotten so bad I can barely get out of bed and move. On the rare occasion that happens I double up on the drugs and sleep it off. Sounds like this guy is suffering times 1000 on a daily basis what I am on my worst days. That's some seriously awful shit. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810425/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810425/

MrJagil 12y ago

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).

themartorana 12y ago
If "Obamacare" did nothing else right, it ended the idea of lifetime maximum output by the insurance company, but it has just taken effect. This story is one where they were likely dropped from insurance after they reached their plan's maximum output and they're now left to fend for themselves.
alphydan 12y ago
<< After nine years of doctor visits, operations, a lengthy trip to Mexico and a lawsuit filed against various hospitals for alleged medical malpractice, Joan says she and Rick have spent roughly $600,000 in search of relief for Justin. >>
michaelochurch 12y ago
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.
- plaguuuuuu 12y ago
  It's comparable to living in a third-world country. In the eyes of someone from a country with universal healthcare it beggars belief that people actually want to live in the US. It just looks like you're all boiling like frogs with no real understanding that your situation is abnormal even by the standards of many developing countries.

beggi 12y ago

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

spain 12y ago

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?

callesgg 12y ago
I have always thought exactly that to. On a side note when I have been in major pain at some time I am have atleast been partialy capeble of consiusly ignoring the pain, it still hurts but i just try not to care. Obviously the pain that I have been able to do that with is no were near the pain we are talking about here.
isopod 12y ago
That's the funny thing about assumptions... In truth, what can happen is exactly the opposite: constant firing of pain signals can end up recruiting _more_ cells to transmit pain, thereby lowering the threshold need to signal pain, and amplifying the effect overall. cf. http://en.wikipedia.org/wiki/Chronic_pain#Pathophysiology http://en.wikipedia.org/wiki/Chronic_pain#Pathophysiology
throwaway91214 12y ago
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)

andrew1601 12y ago

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

cpncrunch 12y ago
Everything I have read about CRPS suggests that it is essentially the same as FMS, i.e. a psychosomatic pain disorder caused by stress. The unexplained weight loss experienced by the patient in this article would also be consistent with this.
- tptacek 12y ago
  What unexplained weight loss? He was diagnosed with a bacterial infection at the Mayo Clinic.
  - cpncrunch 12y ago
    Stress is likely one of the main causes of SIBO.
lukestevens 12y ago
Your suggestion is uninformed; and John Sarno's advice is pure quackery. Please don't speculate like this on severe medical conditions.
- cpncrunch 12y ago
  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 12y ago
    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.

RevRal 12y ago

"...the brain to send pain signals to the body..." Is this wrong or am I missing something?

callesgg 12y ago
It's not a scientific papper you probably get what they mean.
- RevRal 12y ago
  Cool, just wanted to be sure.
dghughes 12y ago
Instead of the other way, probably just a typo. From what I understand, not sure if correct, the spine has a weird role. If you touch a hot stove with your hand you instinctively jerk your hand back but there is a small delay until your brain gets it and thinks "hey that's hot!"

mcphilip 12y ago

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.

mattybrennan 12y ago

Related to the guy who has 100 orgasms/day? http://gawker.com/the-undeniable-tragicomedy-of-a-man-orgasming-100-times-1638083407 http://gawker.com/the-undeniable-tragicomedy-of-a-man-orgasm... Both seem pretty awful.

bitsweet 12y ago
While this seems like a horrible affliction, I don't see how this is related.

bumbledraven 12y ago

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_gabapentin.htm http://www.rsds.org/3/treatment/stacy_campbell_pregabalin_ga...

ivanca 12y ago

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 12y ago
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 12y ago
  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.
12y ago

doctorstupid 12y ago

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

bitsweet 12y ago
This video explains it well http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic_pain http://www.ted.com/talks/elliot_krane_the_mystery_of_chronic...
- doctorstupid 12y ago
  The question was philosophical (and paradoxical) in nature, but thanks for the link.

stevedekorte 12y ago

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.