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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.


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.


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.


He hasn't it tried yet.


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.

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...


Thank you for the description and the link.


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_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/




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