Usually "diagnosed early" refers to diagnosis in the first six months. A lot of the damage RSD causes is irreversible after a certain amount of time.
Example - I started occupational therapy two months after onset and had already experienced spread from the original site (the bump on the wrist, parallel with the pinky finger, had been dislocated at age sixteen. then at age 22 i bruised the still dislocated growth plate - only surgery would have put the plate back and at 16 docs decided it was not worth it - and RSD onset was right there) into all four fingers and up to my elbow in two months. I had also experienced quite a bit of atrophy, loss of flexion, etc. etc. After going into occupational therapy, I was able to stop the atrophy and gain a little muscle tissue back, to desensitize my RSD affected areas in a MAJOR way so i could wear sleeves and other important winter clothing, increase my grip strength and flexion, and lots of other things.
*One note: I had six nerve blocks, two per week for three weeks, and then went straight to OT for an hour and a half session, which is why OT made such headway for me. Because the blocks put my arm essentially to sleep in that it was all for the most part numb, I was better able to stand manipulation, touch, and movement - things I wouldn't have been able to withstand all that without the blocks. Unfortunately at a certain point atrophy becomes irreversible - you can't gain the muscle tissue back. But if RSD is caught early enough, like in my case, you can fight the atrophy off and even get some muscle tissue back.
Another example: most people believe that RSD is a malfunction of the nervous system, but when you try to break it down it's pretty scientific. I try to explain it like this:
If you think of it like a circuit, what happens is that for some reason, a particular circuit that travels from affected nerves and up to the brain and back in a continuous, on-going loop goes out on the fritz. It stops working the way it should, and starts sending bad signals to the brain. For some reason, the information that's sent to the brain warns the brain that something is wrong - something is very wrong. To warn our conscious, thinking mind to stop doing whatever we did to "damage" that part of our body and to start protecting it from further harm, the brain sends information back to the nerve to "go into battle."
"Battle mode" means sending pain signals, swelling up like crazy, and a host of other symptoms that are usually associated with an injury so that our conscious mind can realize that we've been hurt and must take action to heal. But - unlike a normally functioning circuit, the messed up RSD circuit might be wrong - it might be malfunctioning. In fact, what it perceives to be damaged might not have been damaged at all. Most research agrees that we do not yet know why some circuits react to things like a bone bruise (in my case) or the insertion of an IV by going into full battle mode. In any case, at some point the brain is supposed to recognize that we are repairing the damage, and start scaling back the battle. Rather than doing that, the circuit continues to send the same (wrong) information over and over, and the repetition on the continual circuit loop wears a deep, rutted path into the circuit. Every time the nerve sends the "panic! this area is damaged!" signal to the brain and the brain responds with "well, then, do these things so we can heal that area," the path gets more and more worn in. After a certain point - agreed upon by current medical convention to be within 3 to 6 months of the original "panic" signal, the path becomes so worn in that it forgets how it's supposed to act... in effect, it literally does not know how else to function. It cannot remember how to function normally - like a non-RSD affected circuit.
Then because the nerve continues to send out panic signals along the already worn-in path, the brain sends back stronger and stronger symptoms to try to warn us to deal with the perceived damage, since it thinks we are not dealing with it and are in fact exacerbating that damage. That's why things like swelling, color changes, pain, or temperature get worse and worse. It's a twofold problem; not only is the now-misfiring circuit worn in like the path a dog paces when it goes outside to pee, but the brain thinks that normal, moderate measures of protection aren't working, and so sends stronger and stronger and stronger symptoms to the affected area. And the cycle of RSD just gets worse and worse.
That's why it's agreed that being diagnosed early is so important and can be such a life changer. For example, if we catch an RSD diagnosis early enough, rather than subjecting patients to the normal gamut of trying five doctors before even getting a correct diagnosis and wasting months - and even years of time - we are often able to remind the messed up circuit that it's not working correctly, and through various treatments and procedures, we can help the circuit put itself back to normal. That's one of the reasons why doctors tell us to try nerve blocks. The blocks put the bad nerve to sleep, and hopefully upon waking the bad nerve forgets that it was ever sending panic signals to the brain, and instead, it will send normal signals to the brain. Then the brain will respond by sending normal signals back instead of symptoms, and wa-la - an RSD patient goes into remission.
But, if we've had RSD so long that the circuit has worn a deep groove into itself, it's much less likely that nerve blocks will work. Or that the other treatments we try will be able to stop the circuit misfires or even take some of the wear out of the circuit's path.
So, in a very long-winded way, what I'm trying to say is that if we're diagnosed early, we can find ways to stop the cycle from getting any worse. We can catch the circuit while it's operating at 40% panic instead of 110% panic, and then we can keep it at 40% panic through medication like nerve-blockers (neurontin, lyrica, keppra, trileptal, cymbalta, amitryptylin, etc.), physical therapy, mirror therapy, biofeedback, and all that stuff. The 40% that we can't get rid of, we can deal with by using pain medication or other techniques to get by at just 40%.
But for people like my mom, and many other members of the RSD community, help just comes far past the six month period. The medical community doesn't know about RSD, or thinks it's too rare to happen to "you" and so doesn't intervene in the circuit's meltdown until it's too late to do anything except try to treat the symptoms.
So, even if we suffer from moderated symptoms compared to other people's experiences of RSD, it doesn't mean that we don't actually have the syndrome. It just means that for some reason, be it early diagnosis or a lucky chance, our RSD is under control to the point where we can still work full time, or move around without physical assistance, or address Christmas cards by hand.
And one last thing - that's why it's so important to tell your doctor immediately if your RSD suddenly changes. If you wait to tell your doctor about that new symptom you're experiencing, you might inadvertently allow that symptom to wear its way into the circuit path, and it'll be so much harder to get rid of. It's kind of like a weed... if you uproot it when it's young, you have a better chance of it not coming back. But if you wait, or are forced to wait to pull it out, the weed has already had a chance to create a huge root network, spread its seed to other areas of your garden, grow thistles, and be impossible to get out for good unless you take radical measures, like digging out a whole section of your garden or spraying with crazy pesticides [i.e. ketamine].
Example - I started occupational therapy two months after onset and had already experienced spread from the original site (the bump on the wrist, parallel with the pinky finger, had been dislocated at age sixteen. then at age 22 i bruised the still dislocated growth plate - only surgery would have put the plate back and at 16 docs decided it was not worth it - and RSD onset was right there) into all four fingers and up to my elbow in two months. I had also experienced quite a bit of atrophy, loss of flexion, etc. etc. After going into occupational therapy, I was able to stop the atrophy and gain a little muscle tissue back, to desensitize my RSD affected areas in a MAJOR way so i could wear sleeves and other important winter clothing, increase my grip strength and flexion, and lots of other things.
*One note: I had six nerve blocks, two per week for three weeks, and then went straight to OT for an hour and a half session, which is why OT made such headway for me. Because the blocks put my arm essentially to sleep in that it was all for the most part numb, I was better able to stand manipulation, touch, and movement - things I wouldn't have been able to withstand all that without the blocks. Unfortunately at a certain point atrophy becomes irreversible - you can't gain the muscle tissue back. But if RSD is caught early enough, like in my case, you can fight the atrophy off and even get some muscle tissue back.
Another example: most people believe that RSD is a malfunction of the nervous system, but when you try to break it down it's pretty scientific. I try to explain it like this:
If you think of it like a circuit, what happens is that for some reason, a particular circuit that travels from affected nerves and up to the brain and back in a continuous, on-going loop goes out on the fritz. It stops working the way it should, and starts sending bad signals to the brain. For some reason, the information that's sent to the brain warns the brain that something is wrong - something is very wrong. To warn our conscious, thinking mind to stop doing whatever we did to "damage" that part of our body and to start protecting it from further harm, the brain sends information back to the nerve to "go into battle."
"Battle mode" means sending pain signals, swelling up like crazy, and a host of other symptoms that are usually associated with an injury so that our conscious mind can realize that we've been hurt and must take action to heal. But - unlike a normally functioning circuit, the messed up RSD circuit might be wrong - it might be malfunctioning. In fact, what it perceives to be damaged might not have been damaged at all. Most research agrees that we do not yet know why some circuits react to things like a bone bruise (in my case) or the insertion of an IV by going into full battle mode. In any case, at some point the brain is supposed to recognize that we are repairing the damage, and start scaling back the battle. Rather than doing that, the circuit continues to send the same (wrong) information over and over, and the repetition on the continual circuit loop wears a deep, rutted path into the circuit. Every time the nerve sends the "panic! this area is damaged!" signal to the brain and the brain responds with "well, then, do these things so we can heal that area," the path gets more and more worn in. After a certain point - agreed upon by current medical convention to be within 3 to 6 months of the original "panic" signal, the path becomes so worn in that it forgets how it's supposed to act... in effect, it literally does not know how else to function. It cannot remember how to function normally - like a non-RSD affected circuit.
Then because the nerve continues to send out panic signals along the already worn-in path, the brain sends back stronger and stronger symptoms to try to warn us to deal with the perceived damage, since it thinks we are not dealing with it and are in fact exacerbating that damage. That's why things like swelling, color changes, pain, or temperature get worse and worse. It's a twofold problem; not only is the now-misfiring circuit worn in like the path a dog paces when it goes outside to pee, but the brain thinks that normal, moderate measures of protection aren't working, and so sends stronger and stronger and stronger symptoms to the affected area. And the cycle of RSD just gets worse and worse.
That's why it's agreed that being diagnosed early is so important and can be such a life changer. For example, if we catch an RSD diagnosis early enough, rather than subjecting patients to the normal gamut of trying five doctors before even getting a correct diagnosis and wasting months - and even years of time - we are often able to remind the messed up circuit that it's not working correctly, and through various treatments and procedures, we can help the circuit put itself back to normal. That's one of the reasons why doctors tell us to try nerve blocks. The blocks put the bad nerve to sleep, and hopefully upon waking the bad nerve forgets that it was ever sending panic signals to the brain, and instead, it will send normal signals to the brain. Then the brain will respond by sending normal signals back instead of symptoms, and wa-la - an RSD patient goes into remission.
But, if we've had RSD so long that the circuit has worn a deep groove into itself, it's much less likely that nerve blocks will work. Or that the other treatments we try will be able to stop the circuit misfires or even take some of the wear out of the circuit's path.
So, in a very long-winded way, what I'm trying to say is that if we're diagnosed early, we can find ways to stop the cycle from getting any worse. We can catch the circuit while it's operating at 40% panic instead of 110% panic, and then we can keep it at 40% panic through medication like nerve-blockers (neurontin, lyrica, keppra, trileptal, cymbalta, amitryptylin, etc.), physical therapy, mirror therapy, biofeedback, and all that stuff. The 40% that we can't get rid of, we can deal with by using pain medication or other techniques to get by at just 40%.
But for people like my mom, and many other members of the RSD community, help just comes far past the six month period. The medical community doesn't know about RSD, or thinks it's too rare to happen to "you" and so doesn't intervene in the circuit's meltdown until it's too late to do anything except try to treat the symptoms.
So, even if we suffer from moderated symptoms compared to other people's experiences of RSD, it doesn't mean that we don't actually have the syndrome. It just means that for some reason, be it early diagnosis or a lucky chance, our RSD is under control to the point where we can still work full time, or move around without physical assistance, or address Christmas cards by hand.
And one last thing - that's why it's so important to tell your doctor immediately if your RSD suddenly changes. If you wait to tell your doctor about that new symptom you're experiencing, you might inadvertently allow that symptom to wear its way into the circuit path, and it'll be so much harder to get rid of. It's kind of like a weed... if you uproot it when it's young, you have a better chance of it not coming back. But if you wait, or are forced to wait to pull it out, the weed has already had a chance to create a huge root network, spread its seed to other areas of your garden, grow thistles, and be impossible to get out for good unless you take radical measures, like digging out a whole section of your garden or spraying with crazy pesticides [i.e. ketamine].
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