Thursday, November 27, 2014

Where is that #Pain?

The location of pain is actually a rather complicated issue. Especially when you get into chronic pain where the trauma to the body is long since recovered, or was never there to begin with. New research suggests a lot of pain is really in the brain and less in the body, when it is chronic.

Science has almost adopted the idea that pain ought to be all in the brain. There is sophisticated research showing that some brain areas light up more when we are in pain. When we recover, these areas stop lighting up. There are even therapies directed at “retraining” the brain, which can sometimes reduce, or even occasionally cure chronic pain.
So scientists have developed the following concept: after injury or operation our tissues will heal, and normally all goes well - unless we are “vulnerable”. There is some evidence suggesting that when we are poor, smoke, are depressed, stressed, or have had chronic pain in the past, we may be more likely to develop chronic pain.
The idea is that the vulnerable brain retains memory of the trauma with its associated pain: it develops “abnormal neuroplasticity”. A good example is phantom limb pain. Following amputation many people develop pain the non-existing limb; they are more likely to do so if they had experienced a lot of pain before the amputation, so clearly the brain must be involved. Science 2.0

It makes a lot of sense. A lot of new treatments take this theory into account as well. Retrain the brain.

As with other chronic pains, many of us experts have been assuming the main problem for these patients is in the brain. But it recently emerged that the blood of patients with this condition (Complex Regional Pain Syndrome) carries specific immune substances, termed “autoantibodies”. These substances can probably cause pain by binding to peripheral tissues, prompting sensory nerves to misfire – although the exact pathway is not understood. Misfiring of sensory nerves results in a state where the central nervous system, including the brain, has become “wound up”.
In CRPS, peripheral nerves may thus play a role comparable to electronic transistors: with very low abnormal peripheral input generated by the autoantibodies, the nerves steer a massive central abnormality. Without trauma these newly discovered antibodies are probable harmless; the trauma-induced inflammation is required to render them harmful.
In fact, these antibodies may only be present for a limited time, during a “window of vulnerability”, in sufficiently high concentration to cause harm after trauma; the same trauma sustained either earlier or later may not trigger CRPS. The good news is that there are treatment methods, originally established for the treatment of other diseases designed to reduce or remove auto-antibodies, which can now been tried. Science 2.0
 This is pretty fascinating for trauma related research into chronic pain. Understanding the nature of pain and chronic pain goes a long way into developing treatments. Chronic pain is after all a lot more complicated than people tend to thing in the body. 

Tuesday, November 25, 2014

To #Live is to #suffer, to survive is to find some meaning in the suffering


"To live is to suffer, to survive is to find some meaning in the suffering."

I find a great deal of truth in this quote... and not simply because I have chronic pain, which of course would literally be to live and suffer. The straight up fact is life is complicated and comes with all sorts of wonderful complications and pains. Also joys and sorrows.

Think of the Buddhist saying 'Life is suffering'.




The Buddha says, "Life is suffering". What does "suffering" mean? The sutras say: "Impermanence therefore suffering". Everything is impermanent and changeable. The Buddha says that life is suffering because it is impermanent and ever-changing. For example, a healthy body cannot last forever. It will gradually become weak, old. sick and die. One who is wealthy cannot maintain one’s wealth forever. Sometimes one may become poor. Power and status do not last as well, one will lose them finally. From this condition of changing and instability, although there is happiness and joy, they are not ever lasting and ultimate. When changes come, suffering arises.
Thus, the Buddha says life is suffering. Suffering means dissatisfaction, impermanence and imperfection. If a practising Buddhist does not understand the real meaning of "suffering" and think that life is not perfect and ultimate, they become negative and pessimistic in their view of life. Those who really understand the teaching of the Buddha will have a totally different view. We should know that the theory of "Life is suffering" taught by the Buddha is to remind us that life is not ultimate and lasting, and hence we should strive towards Buddhahood — a permanent and perfect life." Note
Suffering is a far broader term to me than pain. Pain comes first and is primary... then from that stems suffering which is secondary. We have pain, then we react to that pain with suffering. I always feel there is some control over my suffering then, whereas I may not have much control over the initial impact of the pain, or not as much control. Pain is treated with medication, exercise and various other treatments and sometimes it works and sometimes it just does not. Suffering likewise is treated in various different ways. We see psychologists, we do biofeedback and meditation, as well as hobbies and distraction techniques. Sometimes I think we do more to confront suffering than we do the actual pain stimulus. We think about how we 'think' about pain. What our belief structures are about pain. Do we have negative thought patterns in regards to our illness? Is there something impeding how we cope with pain? Are there ways to decrease our suffering?

To me that is the 'meaning' behind suffering. Suffering is inevitable as it is universal. To survive a life that may have more pain than we would like, in whatever form that takes, we have to look at what we believe about suffering. What meaning we ascribe to it. Do we believe that it is permanent? Do we believe that it is uncontrollable? I cannot believe that. I know that suffering is something that can and does have a strong impact on our wellbeing. At times it can be overwhelming. However, I know that if we have at least some moderate control over the pain (which does seem necessary) then we can begin to find ways to manage our suffering.

I believe also in many ways pain is a meaning creating experience. Even though it is fundamentally pointless we do define our experiences by it. We do create stories defined by our victories over it. How our character is defined by it. How we are changed by it; positively or negatively. And we also have control over what story we tell. Is it a story of victory or defeat?

Saturday, November 22, 2014

Behind that #smile

"The single most clever thing about a smile is how well it can hide sadness."

Smiles and laughter can hide sadness, suffering and pain immensely well. It always amazed me at how well.

First, take chronic pain for example. With chronic pain you have to function in daily life with pain. So you do. This means tolerating and enduring a certain amount of pain all the time. And you can smile and laugh while in pain. Yet, people never could seem to fathom this. That it was possible to smile and laugh and be in pain at the same time. It has to do with pain behaviors and how those are not pain behaviors. How people with chronic pain have long since learned to mask their pain behaviors. Long since learned to mask their pain. Long since learned to endure and tolerate a certain amount of pain. Not to say, that some levels we cannot simply endure and tolerate, but we have our levels we can mask quite well. This issue with typical pain behaviors lacking and normal behaviors such as laughter and smiles being there instead seems impossible. But it is indeed possible. Makes the pain less readily seen and understood. Makes it diminished in the eyes of others.

Pain leads to suffering. All pain comes with a level of suffering because pain brings with it a level of emotional reaction. We mask the suffering behind smiles for many reasons. Most often because we do not want loved ones to see the depth of our suffering. We do not want anyone to see the depth of our suffering. We feel like we might drown in the depth of our suffering. Words cannot even breach it if we tried to.

Depression can add another layer to this. Or it can in fact be its own layer. I have in my time suffered from depression. It is very isolating. It consumes your perception of reality and doesn't ever give you a break. It shadows your every thought. You can mask it with smiles and laughter, that feel fake and hallow to you, but no one ever notices they are different. Empty. The difference is that depression is not sadness. It is something that swallows sadness. It is the numbness that follows all emotion.

Yes, it amazes me what we hide behind our smiles, so well. Our facades. In a way making ourselves more invisible with our invisible disabilities. But words can fail us sometimes. Words seem insufficient at times.

I often find writing to be a way to express myself the truest of all forms. Sometimes in poetry. Sometimes on this blog. I think it is productive to find methods to communicate our emotions and suffering in different ways. At least to get it out. Once you get it out... you find a bit of peace inside. You can't contain everything behind a smile. A mask.

Friday, November 21, 2014

#Functionally #suffering


Functional. I wrote this about the word because I do loathe it. When I used to work if I was in a lot of pain, but I was There, and I hid the pain and I did my job... I was Functional. It didn't matter in the least bit to anyone how much I suffered, just that I was there. Just that I did my job.

It is the expectation that I would mask the pain, because you simply cannot show the pain or talk about it in front of customers ... that would be inappropriate. It was expected that I would come to work, because how bad could it be? Didn't I work with them all the time? The guilt they put on me when I called in sick, well, that was its own hell.

So what that I suffered underneath? So what that I could barely concentrate due to all that pain? Could not think straight. So remember customers names or faces. Or speak properly with all my words just getting stuck up there in my brain. And typos... all the damn typos. And the noise. And lights. And smells. Made my eyes feel like they were being stabbed. And nausea rolled in my stomach. But I could not eat all day anyway, or I'd be in the bathroom every ten minutes... another fun migraine symptom people rarely talk about. If your not throwing up, then it'll come out the other end. Nothing stays in you for long. So no food. That is a migraine trigger too, but you can't work in the bathroom all day.

My worst fear being off work has always been that I will improve slightly. Not a lot. Not dramatically. Just slightly. Just enough to go back to work and suffer 95% of the time, rather than 100% of the time. That is my worst nightmare. I know that highly episodic migraines pay the same price as chronic, and chronic at 15 a month, is the same as daily chronic.... but doctors don't. Hell, they don't even understand the price we pay as it Is. So if I have a couple migraine free days that will be a Success to them. And I will love it to, but functionally it is No Different. Functionally I will suffer the same. Functionally I will be pretending to function while suffering all day long, just so I can get home to suffer in peace. Yet, I know that is the goal. The end game. You see, you get offered a lot of help when you are not working. When you are working they don't care that you suffer. When you are not working, they care that you are not working. They want to get you working. So they want to figure out how to manage your suffering enough to get you working again. Even though it will not be much. Even though working itself will likely ruin it all because of the trigger infused enviroment. Evan so, they All want to help you because society thinks that is such a shame. Then when you are working again... they will not care about your suffering. Because you will be Functionally suffering.

Tuesday, November 18, 2014

Deserving of #pain #management and a better #QualityOfLife



“The tragedy of life is not death but what we let die inside of us while we live.” ~Norman Cousins 

The tragedy of chronic pain is poor chronic pain management which leads to poor quality of life. We let a lot die inside of us while trying to survive the pain, because we need to survive the pain. We slice and dice our lives, cutting out so many things just to have the energy to endure that pain. All those many things we cut out are the very things, if we were getting chronic pain management, they tell you to do to help with your mood. Get out of the house, take a walk, socialize with people, with friends, do things for yourself, find a hobby of something you have never done before to take up some of your day learning something new. So many things they suggest we try to help with mood and isolation and depression... that we had cut out because of the intensity of pain, the lack of ability to cope, the need to just survive through it and the completely lack of chronic pain management.

 


Lack of pain management stems from lack of understanding from doctors. Because of lack of training they received to begin with. Yet you have to wonder can they not comprehend what a pain problem is? And that treatment of it is complex? Perhaps beyond what they can do and needs the attention of someone who specializes in pain? Rather than, expecting ones patient to simply endure the pain, endure it while working full time... because that makes some sort of sense to them? Do they comprehend pain at all I wonder.

Eventually it comes down to this. Always to this. It is us that is causing this pain. Our lifestyle. We are overweight. Or we smoke. Or a diet is wrong. We change something. Then it is something else. Because they do not want to admit they do not know what to do and they ran out of ideas. 


And in the end what we want and deserve is chronic pain management. A better quality of life. To not just be in survival mode. To add those bits and pieces of our life back in there, if we can. We want a little more life and a little less suffering and that really should not be too much to ask for.

#winter #pains


It is just the beginning of winter and I ache so much it is hard to exercise. I am finding it quite difficult indeed. It now makes complete sense that the pain clinic fellow told me many people have trouble over the winter so that I should try to just 'maintain' and then come spring increase again. I am having a hell of a time 'maintaining'... and in fact am decreasing my time.



I also don't think my brain is quite understanding when to sleep with the darkness falling so early. I sleep ten hours on night and three the next and that seems to be my 'pattern'. Ten hours is not too bad since I feel good after that, even though I feel it is a waste of the day. But when I only sleep two to three hours and cannot sleep any more... that is nuts. That is just insane. I need at least four hours to function. Less than that is a killer migraine recipe. Try as I might though I just cannot sleep. I just lay there and twist and turn. I think it is partly pain related. And simply not much I can do about it. So I get up and read for a few hours and try taking a nap in there somewhere to compensate.