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...)
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?
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.
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.
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.
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?
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.
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.
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.
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.
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.
I'm in the same boat (though I've been in said boat for a while), and while it certainly could be worse (as per the OP), it's not much fun either! Glad you've found a couple of things that are at least mildly helpful.
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?
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.
> 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.
As someone with chronic pain, nope, I don't think one builds up a tolerance to it. Instead, I think I'm lucky in that the severity waxes and wanes. Below some threshold it recedes from being pervasive, going into the background and I have to go consciously looking for it to see if I'm still feeling it.
Exceed that threshold and it's always there, front and centre, just pain. At that point, as throwaway91214 says, I consciously try to ignore it.
When it exceed the next threshold, life pretty much stops for awhile until it recedes again. Those are the sleepless nights and long, minimal days.
(I use the notion of thresholds for simplicity, it's perhaps closer to an exponential scale).
I've had mine for about eleven years. Such is life.
I am the same. I can ignore it until a certain level, then I just have to stop being productive and ride it out.
The trick is to not worry about the effect stopping to ride it out has on your life. Worrying about not working/playing/socializing because it might annoy a boss/client/girlfriend/family/friend or because it will mean less money/friends/etc.
Edit, and hang in there friend. I don't know about you but for me its unlikely to ever get better. I am not an optimist, but there is still a lot of cool shit in this world to enjoy. We are lucky to live in the age we do.
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.
I think it is in Plato's Phaedo where Socrates considers joy impossible without pain. I always thought that this ancient idea of harmony, dating back to the earliest philosophical records and pertaining also to the philosophy of the East, made sense also as a principle of consciousness. So in this respect, the notion of absolute pain (or joy) is disconcerting. Because, where does it reside? What processes constitute pain? Nerve signals, sure, and chemicals. But what is the essence to that? Can the dynamic be abstracted and generalized? Perhaps these questions are the frontier and the real question of the Cartesian ego. Finally, if we don't have answers to this, who is to say then, really, even that there isn't a Hell and eternal pain after death?
>Shouldn't you then technically feel less pain over time if it's constant?
getting accustomed to pain isn't a trait that would be carried through evolutionary selection. Pain is a signal about something that has to be addressed. Out of 2 possible reactions - acting on the signal vs. not hearing the signal the first is obviously evolutionary preferable. An yes, evolution and selection isn't merciful, and here i'm very agree with buddhism. We evolved to be scared and run away from sources of pain and constant risk of pain is what makes us moving through life.
BTW, am i the only one who is WTF??? while reading it:
>In 2006, Justin, an Upper Dublin High School grad pursuing an economics degree at Penn State University, lost 60 pounds over the course of a few months, with no end to the mysterious weight loss in sight. Justin’s doctors, perplexed by his condition, performed surgery on him to install a feeding tube in his small intestine.
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.
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.
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).
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.
<< 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. >>
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.
"[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.
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.
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.
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.
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!"
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).
"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.
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.
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.
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.
That's a strange comment. When did I say that? I'm suggesting that curing muscular pain with psychotherapy and emotional journaling is (beyond some simple relaxation response) nonsense; and suggesting it's appropriate for desperately severe CRPS patients is deeply misguided.
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.
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...)