At physio and that #exercise thing again

Today was my second day at the Lifemark clinic, which is the physic clinic the insurance company sent me to for routine exercise. They did a great job the first day in review my problem areas which there are a few. Fibromyaliga leads to a lot of all over pain. Hypermobility on the other hand leads to very specific, painful joint pain in the ankles and knees... sometimes hips when I walk long distances as well.  Basically, you have three joints, all moving the way they please, and it makes things quite out of whack. The knees for example, the joint ball does not move at the angle it should because of the way my hips and knees move... thus causing a lot of pain. My feet, well, I have flexible flat feet and am very flexible in the foot, which apparently is causing my ankle to slack off and causing pain and stiffness in there. So leads to problems. Other issues are caused by the migraines, such as the constant neck pain. A lot of it then is developing all the right physio work to help with all these problem areas.

The other component is exercise. Which is was doing but apparently that is not good enough for my insurance company. Whatever.

I have found exercise really makes the migraines more Intense. I will get a migraine regardless. Get a migraine every day. It will come either way. But when I exercise it will be one Intense bugger of a migraine.

One thing I have noticed about overall pain and exercise is this: when I begin exercise on the stationary bike for example there will be instant muscle fatigue. My muscle just ache for me to stop. Then when I continue there will be a pretty intense level of pain increasing and increasing. Really makes you think you Should stop. Really hurts right in the knees and ankles. Extremely unpleasant sensation.

However, if you continue, methodically and at a consistent pace keep at it... at around the 10 minute mark the pain will drop. It will still be noticeable, and not pleasant, but not screaming painful. Just a real constant pain. And that I can maintain. And continue for another good 10 minutes before the pain comes back at a high intensity and just does not quit. At that point I am done. Have not gotten past that yet. I am sure the physio will help with that assuming they can get my knee pain down. Anyway, then I get off the bike and my legs feel like limp noodles. And from the waist down I have a tingling sensation down to my feet. Which I have no explanation for, but is the same sensation I have been getting sporadically anyway just more intense after exercise.

Almost that #NewYear thing again

New year's resolutions are essentially a moot point to the chronically ill.

Sorry I already am loaded up on short term and long term goals right now. I am already adjusting my lifestyle. I am already increasing my exercise. I am already doing an infinite amount of things for pain and my health... what more do you want from me?

I mean really.

Yet, every year I think to myself why not add on Another goal.

Well don't.

We do have enough goals. Instead just consider reflecting on the goals that you have established for yourself. Consider things like:

  • Do you have too many? It is easy to be overwhelmed with all the things we Should do when it comes to our health and therefore we pick too many damn things, such that we fail at a lot of them. No progress gets made and we feel horrible. Because we have too many goals outstanding. What is it you want to accomplish? Break it down. Choose the important one. Go for it first.
  • Pacing. Sometimes we give things up too quickly because it takes time to achieve things with a chronic illness. We feel like we should get it done Now. And that just does not happen. Things need to happen in their own time. If your goal is particularly taxing slow it down, ease up on it, decrease your pace... as you get into it you will adjust. Always start slow. Until you adjust. Even with things like meditation. It is hard to get into the habit of doing it. Set aside a couple minutes at a certain time of day you find comfortable and start with some relaxation breathing. Once it becomes habit increase your time. 
  • Give it time: It takes about three months of a consistent new activity for it to become habit. Three months of not smoking. Three months of consistent exercise. Three months of whatever for it to become an ingrained habit After you are consistently routinely doing it. So give it time to build up to consistency and then get to that routine part.
  • I find it particularly helpful for long term goals to piece them up into short term goals and work on them in fragments so I know I am achieving part of my aim. Like step one: 10 minutes of yoga. Do that for three months. Step two: 10 min of yoga and 20 min walk alternating days. Do that for a few months. Step three: begin stationary bike aerobic exercise starting with base amount I can do... which turned out to be 10 min. Increase over six months. That sort of thing. The long term goal is to exercise, but you break it up by starting slow with what you can do, and slowly increase it with activities you can do.... getting more and more comfortable. Changes in diets can work the same way, eliminating certain things first, continue on from there once you are comfortable with that.
  • Just review the goals you have. And figure out for the new year which are the most important ones you would like to continue with. Which are secondary. And which are least important. Put your main focus into your primary goals. Discard the others, or put less focus in them, or longer pacing for them. 

We can have other resolutions of course. Any resolution we want. But I think we have enough health goals to keep us occupied the whole year and then some. It is simply a good time to review those goals. See what is working for us. What is not. What we might want to charge. Or even just change our approach to a goal. Look at it in a new way. Make a new plan about how we might handle it.

Think #now, not the past

Your future will never be a reflection of your past, let alone this idealized form of the past that never existed. We are all a little guilty of framing our past in either a rather rosy light or a rather negative light. It is the way the brain is designed to highlight key aspect and haze out the dullness.

Nevertheless the factors that existed in your past that you believe made things better will not be the same factors you will experience in the future. You will never have the same set of factors again. Not to say the future may not be awesome with some awesome factors, just that they will all be different. Age amongst them.

I think about the aspect of pain for example. That will never be what it was when I was younger. Pain has morphed in my life. It has grown into this living breathing beast. It has expanding into more than one pain condition. Hard not to idealize a time when there was just One pain condition, isn't there? I think to myself that I really coped well back then. But in truth I didn't. I fought hard to cope back then. Because pain is pain, no matter if it is one pain condition or three. Three sucks a lot, yes, but one sucks just as much. It was brutal and hard and I fought depression there for a bit. It was not a rosy happy story. But one thing is very true, I did cope well in the end. I reached a sort of plateau of coping really well. And then more pain came into the game. Sort of through me off my game, slowly, but surely.

And I will never return to the plateau of coping. I need to learn new ways to cope with new circumstances and factors. I am a different person with different levels of pain with a different life.

So yeah... accept the now. It is all we have. We need to move into a future that is unknown to us where we can accept all that we are really doing is improving on the person we are now. I have to accept any improvement on my circumstances Now is what I am aiming for into the future. Not to be what I was. What I was is not a comparison anymore.

Another example occurs to me. I think now that I am at the pain clinic that I have this desire, an earnest desire to work full time again. I think to myself... it must be better than it was before. I must be better enough that all that happened before would not happen again. You see, I have tried to dull what happened to me at work so I don't think about it. Dull it so that it is not as intense as it actually was. Makes me believe in some sense I could work full time again, even when others have told me I can't. I just think financially it makes sense. I suppose in every other way it does not. I project on my past self this sense I was strong, and I pushed through the pain and I persevered. That is true, but I was also in too much pain, I had no life because of it, and I was suicidal. I can't let myself forget the reality of what happened there.

I accept the now. If in the future I do vastly improve I will work part time. If the part time works exceptionally well. i will consider full time. That way I will not force myself into something I cannot do.

Goals for 2015

Goals for 2015....

  • Do less pain
  • Do less of that pain thing
  • Work of feeling less pain
  • Ignore all the pain
  • No pain

I got pain for Christmas... but lots of other things too so it is all good.

My morning...

Lack of sleep and pain just made me want to stay asleep. But Christmas and presents!

So bring it pain!

Okay don't bring it that much. I took a pain killer. It seemed to do nothing. Forget that then.

I will enjoy myself even if I have to walk grandma speed... and by that I mean slower than my grandma. Going oooh eee aaah eee that hurt, aah son of a monkey licker that smarted.

Because Presents!

No really. I love Christmas.

Yeah. That happy.

It was a good year. I went to visit my family last weekend and opened presents there as well as had dinner and played cards. We came home and opened more presents... because I could Not wait. Then we got some in the mail, a friend gave me one and my spouse bought me a few more for Christmas day! Yay! So today had more presents to open and another turkey dinner my spouse cooked for us.

So it wasn't pain free? I really didn't expect it to be. Would have preferred a Little Less pain to be honest but sometimes it is what it is.

Cup o' tea

This Christmas I got loose tea from my mom and spouse. My spouse bought me two bags of tea, whereas my mom bought me that three canister set there. My mom also bought me that tea maker to the left and my spouse the cup with net in it to the right. So I am all set now!

You see we have a tea shop that recently opened in town so we have a readily available source of a variety of teas. And for me I thought tea is better for me to drink than diet coke, so adding it into my diet is a good thing.

They have teas there for different specific things as well. All sorts of different ones really.

I have tried their mint tea and it is very good. It is called Moroccan Mint and has Green tea and Moroccan mint. I general use mint for soothing nausea. Green tea of course is a good one as well for other things. I just have a sample of this one though, so I will have to pick up more.

What I have a lot of is called Peace of Mind. He said a lot of people find it good for stress but it is actually good for headaches. That of course interests me. I just happen to like the taste of it as well. It has chamomile flower, passion flower, skullcap, spearmint leaf, ashwagandha root, orange peal and lavender.

And of course I also have a sleepy time tea as well. Always a good choice for me.

For just flavor I have Earl Grey, a medium blend and a sort of berry tea.

We had Christmas early here so I have had the tea for a few days now. I have been averaging two to three cups a day. At the very least three less pops if not more. A good change.

The silent scream

This image reminded me of those times in my life when I was trying to function with acute pain.

There is just something about working with acute pain, and being able to mask it, while thinking how the hell can people not See This? How can they not see in my eyes how much pain I am in? How much effort it takes to just exist let along think through all this pain noise?

You feel like it is one long silent scream that no one ever hears. It is there. Just never heard. Always beneath the surface. Never coming out.

And it is a horrible feeling.

When it got really bad, unbearably bad my facade would get this small cracks in it. Some people would notice but not all. One thing that happened is that I would laugh at some joke I made and it would be a good solid laugh... and inside despair would well up suddenly and tears would suddenly be There, and I would have to choke them back. You see all this emotion from the pain was just right there. Because I just could not handle the pain. I could not even pretend to so trying to inevitably failed me. That is the 9 pain. 10, well, I would not even get to work... threats and ultimatums or not it was just not physically possible. But threats would get me there with a 9, even though I could not function at that level and ever single motion was agony.

Just a silent scream.

What we need is people to listen to the words that come out of our mouths. To actually get effective pain management treatment. It took well over a decade for me to be sent to a pain clinic and into the programs I am going to now. For people to listen to what I am saying and try different approaches. I am glad for it. Just wish they had listened when I was screaming.

'Dealing with the same hell; just different devils' #ChronicIllness

For my reflection today I think this one is perfect for all of us with chronic pain and chronic illness.

'We're all in the same game; just different levels.'

We all have illness and pain. We are all dealing with something. We call all relate to each other on that, even if we have completely different disabilities. But we can also be on different levels of the game. I know people with fibromyalgia that are incapacitated with it. I am not. We are on different level.

'Dealing with the same hell; just different devils'

Chronic illness is extremely difficult to cope with day to day. We all have our ways of coping. We all have our struggles or devils that are obstacles to our coping. In many ways we can relate to each other on the suffering it causes and the difficulties of coping with our conditions, even if the devils come in different forms. For example I have problems with depression. I know others have problems with anxiety, but that is never something I have battled before. We are all different comorbid mixes; different devils. But the suffering is the same hell we all deal with.

10 #Fibromyalgia problems

1) Dramatic statements... that happen to be true.

2) Fibro fog so bad instead of ironing our shirts we ironed our grilled cheese. At least it worked.

3) Putting up with strange medical tests and procedures.

4) So sore we do not like the touchy

5) Stairs...need I say more?

6) Have the case of the drop-sies way too often

7) Have to plan our planning. Sticky notes on our sticky notes.

8) Hate doors, but not as much as stairs.

9) Lose our ability to use our words.

10) So photophobic we are cool

#Fibromyalgia: You are just a perfectionist

I just read an article on that whole type A personality business with Fibromyalgia and IBS again. And it bothers me because it seems like a rather large assumption they are making. And... I have a type B personality type.

Here is what it is actually stating here:

"biopsychosocial hypotheses abou chronic fatigue syndrome (CFS) posit that personality and stress have predisposing and perpetuating roles in the persistent and unexplained fatigue that characterizes this functional somatic syndrome. Some studies indicate that many CFS patients are characterized by an achievement-oriented and perfectionist personality, and that such tendencies coupled with self-criticism drive these individuals to work beyond the point of exhaustion in a way that may initiate or perpetuate chronic fatigue.
Although research indicates that CFS patients use maladaptive coping strategies more than healthy controls, it is unknown whether this is true relative to other chronic illness groups.
This study examined perfectionism dimensions and maladaptive coping styles in CFS patients compared with healthy controls and two other chronic illness groups. Participants were drawn from a larger sample of community-dwelling adults from the USA or Canada (n = 980) who completed an anonymous online survey on personality and health after providing informed consent. Authors selected individuals who indicated on a medical checklist that included 13 different chronic health conditions that they had been diagnosed by a medical professional with CFS, irritable bowel syndrome (IBS), or fibromyalgia (FM)/arthritis for 3 subsamples.
The remaining participants were screened for the presence of other chronic diseases, leaving a final healthy sample of 564 subjects, which was divided into 6 random samples of comparable size to the illness groups, one of which was randomly chosen as the healthy control group.
Maladaptive perfectionism was significantly correlated with self-blame coping in both the CFS group and the healthy controls. The correlation between maladaptive perfectionism and behavioral disengagement coping was also significant for both group. However, these correlations did not differ significantly. Standards perfectionism was not significantly correlated with self-blame coping in the CFS group, but was negatively correlated in the healthy controls. The correlations with behavioral disengagement coping were negative in the CFS group and controls, but not significantly different. In the IBS group, maladaptive perfectionism was significantly correlated with each of the 4 maladaptive coping styles, whereas standards perfectionism negatively correlated with denial and behavioral disengagement.
In the FM/arthritis group, maladaptive perfectionism was significantly correlated with all but substance use coping while standards perfectionism was not significantly correlated with any of the coping strategies.
Overall, these findings suggests that maladaptive perfectionism promotes self-critical thoughts that fuel a tendency to cope with stress by becoming consumed with self-blame rather than taking constructive action, a tendency that may be pronounced in the context of CFS, and that contributes to the prolonged chronic stress and subsequent allostatic crash posited by previous studies. Furthermore, they provide evidence that cognitive behavioral interventions that target perfectionism may help enhance the coping capacities of people with CFS." Science Codex

Hate to say it but I am not a perfectionist in any sense of the word. Therefore, we are looking at a generalization. My coping strategies generally are not maladaptive either, although we always have to be on thee look out for behaviors that become so when we are coping with chronic pain and chronic illness... some habits can become maladaptive. Even before my illness began I was not a perfectionist. I was the sort of kid who used to work on a term paper the night before and still get a good grade because I am smart, not because I am that inclined to do well. I never worried excessively about doing well. Just did what I did and let the chips fall where they may. Never stressed over tests, just studied and then did. And never experienced test anxiety, as it never occurred to me to worry before hand. Had some horrible speaking in public anxiety because I am rather reserved and shy though. I am just rather easy going and laid back to be honest. I do worry in excess but stop myself when I realize I cannot do anything about it. I am very indecisive and then make quick decisions when I realize mu indecisiveness is causing me stress. Just not a perfectionist. I am a disorganized, procrastinator that is a little flaky and really absentminded. Not so much a perfectionist and over-achiever, eh?

The fact remains they like to toss this out there because it it is our Personality, and Stress then it is All In Our Heads and Somatic. In other words not Physical but Mental. And that is another story altogether.  That is ignoring a great deal of evidence. That is not to say stress and how we respond to it is not a factor. The way we are physiologically means we have a messed up stress response... not stress first then slippery slope into disease, disease first and then poor stress response. In my opinion, of course. You just never know.

"The only thing I know is this: I am full of wounds and still standing on my feet." #StillStanding

In this picture is my common-law spouses shadow by the way. Instagram photo.

This is a powerful statement "The only thing I know is this: I am full of wounds and still standing on my feet."

Suffering is something that is universal in experience. The degree perhaps changes, but we all experience it. We have an amazing capacity to endure it and overcome it.

With chronic pain I can say Here I Am. I am still here. Through all that pain. Here I stand. Although perhaps my track record in life is not 100% as they say, since I did try to end it all. But I have survived to tell the tale and even that tale taught me a lot about suffering and coping with suffering.

We earn every scar we have from this battle. We are covered in wounds and scars no one sees and earned every one of them. And we still stand.

It isn't a matter of our strength though. It is a matter of we want to live. We want to survive. We want to endure. How people live with pain... is that they do it... because they must. That is not strength, it is fact. It is this very desire to persevere that enables us to strive. Enables us to continue and fight. And then hope, well, hope is that which makes us believe there is something worth fighting for.

Yes, this battle that has wounded us and seared us with invisible scars changes us in profound ways. How could it not? Some of those ways are in fact positive ways. Some of the things we learn about ourselves, others and the world around us have a profound impact on how we see things.

I'm #Fine-ish

Do you tell the truth? Or do you say 'I'm fine'.  Mine is 'Pretty good.'

Yes, in fact we are liars. We do not tell the truth all the time. And for good reason. The truth is painful to discuss all the time, especially when we ourselves may be trying to distract ourselves from the pain at the time. It can be inconvenient, as in you may be out in a social gathering and to start disusing the truths of chronic pain life is rather harsh and a bit of a depressing topic to people who do not comprehend it and have no clue what to say to you when you have then spoken some of that truth. It can be that we know people just do not want to hear it all the time and we ourselves do not want to be perceived as chronic complainers. It could simply be we do not want others to worry. It could also be we ourselves do not feel like talking about it.

Most of all, the truth is a deep, heavy topic that scares a lot of people. We can be vague and light about it. But if we gave them the straight up brutal tale that is chronic pain it is frightening and scary and they have no ides how to respond to it. We don't even want to discuss this truth all the time... that is how deep and intense it is. We instead try to distract ourselves from the pain, not dwell on it.

There are times when we say 'This is my world. This is my struggle and this is the way it is.' and just rant for a bit about what our existence is like. Sometimes we need to get that out. Can't have all that truth just buried within us, eating away at us. Making our isolation that much more profound.

There are times when we sneak out wee tidbits of our existence and expect others to weave together a blanket of what it is to be chronically in pain from all the clues we drop all all the little phrases and all the little behaviors.

Even 'I'm fine' is a clue in itself. It Never means that. Not ever. People should just take that to mean we are in pain of some sort but don't feel like expanding on it at that time.

When I say 'pretty good' I actually mean I 'mentally and emotionally' feel pretty good about the pain I am in at that moment. Pretty good mental day.

There are reasons why we use the 'I'm Fine'. It is fine to use it in fact. As long as we actually have people in our lives, or online, that we can be brutally honest with when we need to be, then we do not need to discuss the brutal, intense details every single day.

The world #breaks everyone, and afterwards, some are #strong at the broken places

 I chose two pictures I created for my reflective blog post today. The first clearly expresses we can have wounds that are never seen. We can have invisible disabilities that do not show. They can cause a lot of isolation and suffering. Coping can be a constant struggle. A lot of wounds that never bleed.

"The world breaks everyone, and afterward, some are strong at the broken places." This quote is a favorite of mine. You see chronic pain, chronic illness, have broken me. I was suicidal. I tried to kill myself. And I don't even just mean this extreme. Chronic illness and pain erode us. It is isolating. It is draining. It is a constant battle. There is no break. No victory. There are times when we cope very poorly. It is a constant struggle. At times it feels like it breaks us down pretty good.

I like to think I am stronger in my broken places. That when I get back up, dust myself off, try again that I learned a little about myself and my capacity to cope from the experience. That I can cope better because of the experience. Or at the very least learned I need to know more about how to cope to deal with the pain.

In some respects this is just a belief I want to have. It is comforting to believe that I am stronger for all the struggles I have gone through. That somehow I have learned something through the difficulty. I truly want to believe this.

In some respects it is a fact. When I was younger I knew nothing about how to cope with my initial diagnosis and it took a lot of difficulty and struggle to figure it out, but figure it out I did. And then did the same with diagnosis after that. That person I was is not the same person I am now. I can cope a lot better than I could back then. We never give ourselves enough credit for the skills and methods we have learned along the way and which work to help us cope every single day. Not to say we might even improve on them, but the fact is, they are vastly improved on what we began with.

In fact, we are stronger in our broken places. But we have broken places. And we have more than most people do. And they are all wounds that cannot be seen and do not bleed.

Another fact, we are at more risk than others of breaking. We have a lot working against us. More likely to have suicidal thoughts. More likely to commit suicide. More likely to have comorbid depression or other mental illnesses, if those are not our primary invisible disability to begin with.

We fall. We get up. We cope poorly. We cope well. It is a process we go through continuously and we must always be aware of the dangers that can occur along the road. Like when our pain exceeds our capacity to cope.

Went out and about to a #Chsitmas Party

I managed to go out to my spouses work Christmas party. I think that these sort of social gatherings are vital to boosting the mood at times although it can be difficult to participate. I had a pretty good day overall. I was sore in a fibromyalgia way because I cannot sit in one position long without feeling the pain from that... and it is just how it is that you end up sitting in the same position for too long at these sorts of dinners. Even though you can do some walk-abouts or even some dancing, when the times comes for it.

I had been in the pre-migraine phase (Prodrome and aura) for a good portion of the night. So felt a little doppy and not really into the flow of things. You know how that is. You can actually see it in this picture taken shortly after dinner. My eyes are wide, to keep them open. And they look poofy... which is just a migraine thing sometimes.

But I felt decent. Just you know... a little out of touch with conversations and the flow of things. A little unaware as such. But happy to be there. And not in any pain yet.

There was a great meal. Lots of good company to visit, as I know more people this year. I had a little to drink... light, light beer which generally treats my brain fine. And I think in this case slowly the migraine down by inhibiting me feeling the initial pain by a little. Since I did get a headache and sort of ignored that. The lights in the room were bothering me, and I ignored that. I was having a good time at this point. Even went and danced for a few songs anyway.

All in all I quite enjoyed myself. It was nice to see everyone again and to spend that time with them all. Wish I had been a little more cognitively present, but most people didn't notice because they got rather tipsy. So that was all good.

I on the other had did get my full blown migraine by the time I was home. Like it was waiting to pounce on me. Pounce it did. Better than last year, where that happened during. Still it sucks that with migraines get get laid out for the migraine, not the hangover. And it took me some time to fall asleep with it. Which is all you can do if you have alcohol in you, because you cannot take a medication for it. So sleep it is. Which does work wonders. You wake up feeling great. Ready to take on that days migraine when it comes.

In the picture of me I have a velvet jacket, a vest and see through white blouse and black pants on. It looked pretty good. Just a mix of old work clothes and a new blouse really. I had intended, spontaneously, one night to wear a dress. You see I was online... on my sleeping pill which lowers my inhibitions a bit. Saw this dress and though, hey, I should order that. I did in fact order it and boots to boot. From the UK, so they are not even here yet. Lesson here is do not shop for things when you are on sleeping pills. It is a bad habit.

I hope you guys get out there and do something special for one night at least. Have a little fun, within limits. We often have to get out of our comfort zones doing something we know will cause us pain, because we know it will also give us joy. And we need some joy this time of year. I hope you have a good pain day when you do. But travel prepared!

Reversing #ChronicPain? Tell me more

We all know that the medications used to treat chronic pain from anti-depressants to anti-seizure medications have a long list of side effects and very little actual pain reducing effects. Take fibromyalgia as a very good example with the three approved medications being Savella, Cymbalta and Lyrica... however, when you look into it very few people get a positive result and that is not counting the side effects they put up with for that. So are they really all that effective when so few of the FM population even respond to them? Apparently good enough. Then there are the pain killers, which when it comes to chronic pain you might as well call pain dullers... for a short duration in time. Never a great solution and one with a massive stigma these days. We have all sorts of other alternative treatments but that is not what this is about. This is about Actual treatments... and one coming down the line that might actually do something. Color me intrigued.

"Activating A3 receptor with adenosine molecule prevented, reversed chronic pain

The researchers analyzed more than 300 rodent models of chronic neuropathic pain - pain that results from nerve damage.
They found that activating a receptor in the brain called A3 halted or reversed chronic pain in the rodents, and that this receptor could be activated by a small adenosine molecule and other small-molecule medication created by the National Institutes of Health.
What is more, activating the A3 receptor with a small adenosine molecule did not alter the normal pain threshold in rodents or trigger the reward center of the brain - a process that can lead to addiction with opioid use.
Commenting on their findings, Prof. Salvemini says:
"It has long been appreciated that harnessing the potent pain-killing effects of adenosine could provide a breakthrough step towards an effective treatment for chronic pain.
Our findings suggest that this goal may be achieved by focusing future work on the A3 adenosine receptor (A3AR) pathway, in particular, as its activation provides robust pain reduction across several types of pain."
The team notes that A3AR agonists are already undergoing clinical trials for treatment of inflammation and cancer, and - as demonstrated in this study - the drugs have caused no serious side effects so far.
"These studies suggest that A3AR activation by highly selective small molecular weight A3AR agonists - such as MRS5698 - activates a pain-reducing pathway supporting the idea that we could develop A3AR agonists as possible new therapeutics to treat chronic pain," adds Prof. Salvemini."

'Robust pain reduction across several pain types'. Now that is what I am talking about!  No serious side effects so far, who knows what that means but lets hope it isn't the long lists we deal with now. I am fascinated by this idea anyway.

Found an interesting #video I might #mediate to

I wonder if I could use this to meditate. It looks so interesting to watch.

Anyway if you want the video: To Download directly, go here:

#personality and #ChronicPain

I have thought often about personality changes and chronic pain. I have written about it before in How Chronic Pain Affects Personality. The fact is pain is a significant, constant stressor on us that has to impact certain factors of our personality. Immediately I believe we are impacted just in how we cope in how we hide the pain... in the facade we adapt to mask the pain. This facade of wellbeing often becomes a part of who we are. However, over times there are other changes that can happen. I have becomes more isolated for example, since pain certainly when I was working made it difficult to just have the energy and capacity to engage in any extra activities beyond work. That led to a rather hermit lifestyle.

A study looked into some brain changes that could account for some of the personality changes we see in chronic pain conditions.

"interested in finding out whether more subtle changes to the brain, known to occur in people with chronic pain, could also lead to shifts in personality.
Their study, published recently in PLOS ONE, studied 22 people with chronic nerve pain on one side of their face.
"These people report a severe burning pain in their face. They say it's like lightning or a knife through their cheek," says Gustin, adding such pain can occur if nerves are injured during dental surgery.
Using five different brain imaging methods the researchers compared the brains of the chronic pain patients with those of healthy controls.
They also assessed the personality of participants using a 240-item questionnaire.
Gustin and colleagues found that people with chronic pain were more passive and less novelty seeking than the controls.
"Chronic pain patients are less likely to want to go out and explore the world," says Gustin.
Imaging found chronic pain patients had greater activity in parts of the brain involved in emotions, cognition and behaviour
In particular, they had more neuronal growth in the prefrontal cortex, which is a part of the brain linked to emotions, cognition and behaviour -- including seeking out new experiences.
The degree of nerve growth was correlated with the degree of personality change, says Gustin.
She says previous research in animals also showed similar changes associated with chronic pain, says Gustin.
Gustin and colleagues argue that these brain changes occur after the onset of chronic pain and lead to a reduction in novelty seeking.
Importantly, all the changes seen in the brain were on the opposite side to that of the face pain.
Given that the right side of the brain controls the left side of the body and vice versa, this supports the idea that the pain was directly linked with the brain changes.

Focus on pain

Gustin thinks greater nerve growth occurs in the prefrontal cortex because people are focusing more on their pain.
"I think this is because these people are thinking and worrying more," she says.
She says this worrying in turn could prove to be "vicious cycle" by exacerbating the brain linkages that lead to decreased novelty-seeking.
Gustin says other diseases could also lead to subtle personality changes like this.
The findings challenge a long-standing view that people don't change their personality after the age of 18, she adds.
In future research she would like to see if it is possible to reverse brain and personality changes due to chronic pain by altering brain rhythms.
Gustin says a major outstanding question is why some people develop chronic pain in the first place and others, with the same injuries, don't"


I finished my Christmas shopping. Like most people with a chronic illness I did most of my shopping online but I also did some around town. I avoid large shopping malls as I tend to find that exceptionally draining. Just the walking, commute and the crowds is a bit much for me. But I can hit a few shops in town without problems.

It is the season of stress!

If you do not do the online shopping then remember to take a lot of breaks!  And you do not have to do it all in one day. It is always better to go with a list and just go in and out. Know what you are going for so you do not have to linger.

I know this time of year can be pretty stressful for people. And I like to say to try and keep it simple but that can be difficult. I know a lot of people like to do the big family dinners for Christmas. But there are options there. You can do a lunch instead and do platters and cold cuts. You can do a pot luck dinner and have everyone bring dishes... that is always a fun one to do and a lot easier for a host. Or someone else can host and you can go over There! Or you can all go out for dinner, that is always nice.

There are also a lot of social obligations this time of year... for those who are not hermits that is. I do not have that many on my plate, which is how I like it. But some people can have quite the load. Remember it is fine to say no to some things. Especially if they require travel and you know that it will exhaust you too much... and you might have to work the next day. Some things take more energy than others. We can choose some over others. We don't have to accept every thing that comes our way. Even when I was working there were some work obligations I would say yes to... like helping with the Santa Claus parade and then others I would say no to, because I had said yes to one and felt like I was all good on that front. I only have so much extra energy and no one is going to guilt me into using it on every little thing that comes up. However, there are those things I really do want to engage in. Like my spouses Christmas party. In which case, I will go and ensure I have all my medications on hand to do so. I will go even if I do not feel like going and even if it is not a good day to go because I do not want to disappoint my spouse but the fact is, I want to go, so I hope it is a good day.

Winter is not always kind to us in general. It is a busy season and it can be stressful. The fact is we actually should be taking it easy and not be taking on more stress. Therefore we really should take care to ensure what we choose to do and how we do it is enjoyable and not stressful during the holidays. Not too much activity and just right for us.

The #pain doesn't go away. You just make room for it

I think something I have come to terms with when it comes to chronic pain is this realization that the pain will not go away. That is this actual physical sensation of pain will not go away. It can be lessened to some extent with various different medications. It can be managed with various different methods. But it will be there.

I always knew this but there was a time a long time ago when I had believed the migraines at least would go back to this low monthly, quite manageable level. And that would have been quite nice. I don't believe that any more simply because even with the best most effective preventative medication and the most effective response rate I would still be chronic... but quite a bit Less chronic than I am now. So there would still be quite a lot of migraine days. Not counting the fact the fibromyalgia is a never-ending story of its own.

So there will be pain.

But you make room for it. Because you must. And we all know this because we all know that we develop a certain baseline tolerance to pain. Like we say 'this is my every day baseline pain' and this is my 'not functioning pain' and this is my 'tolerable pain'. We have this level of pain that becomes acceptable to us because we can manage it. We do manage it. We can and do have a life with it. And we have pain that we cannot manage and it interferes with our capacity to function in every day life. Our main goal in pain management is to reduce suffering so that we have more manageable days and less unmanageable days, and less overall suffering. Even though we cannot eliminate the pain altogether. We can, hopefully, make room for other parts of life... and that is the Most important thing of all. Quality of life. When that suffers, well, we are suffering well beyond our capacity to cope. When we we are coping then we have a better quality of life. As in we have a life in there.

It is by no means an easy feat. Especially when medication alone is rarely sufficient to manage pain. Understanding what more we need to accomplish is not always an easy road to travel when our doctors have little or no understanding of how to help us. It can sometimes take decades for us to even find any resources to get us on the road to pain management.

I have also discovered in my days of pain that there are times when I am coping very well and times when I am coping very poorly. For example, there was a time when all I had to battle was fibromyalgia and while it was a struggle initially I developed some strong coping methods along the way. For a bit there that was awesome. Then along came those pesky migraines and still I managed... until they became chronic... then I just pretended to manage because there was nothing else I could do at the time. Then I could not pretend. So now it is a struggle to find new methods to cope with new levels of pain and different types of pain. Accepting the fact that the pain exceeding my coping strategies and that I could not function at work like that was quite the blow to me to be honest. Even if it was blatantly obvious. Not working and reducing the level of stress in the day has increased my ability to cope with the level of pain.

In the end you just have to accept the pains existence in your life. You do not have accept suffering though. I firmly believe we have the capacity to reduce that in many ways, although pain directly leads to it and managing suffering is a constant task of ours. We also have to make an effort to make room for other things in our life because it is the other things that compensate for the pain. Although it can be difficult to manage much, a little goes a long way in improving our moods.

Sometimes people don't think before they speak... and it #hurts.

I have had an acute migraine every single day for the last week. I mean one of those migraines that starts early and the pain level is at a 9. Difficult to manage and treat. I believe I have the lovely weather to thank for it to be honest.

So it had been difficult for me to manage much of anything. I have been taking more triptans than I usually do, but less than the maximum. I am just very sensitive to them so a lot of side effects therefore I am told to take them rarely. However, when it comes to fighting migraines at this level they are the best bet I have of getting any real relief.

Then my spouse says flippantly to me... that he noticed I have not showered every day and he does not like that fact. Which upset me quite a bit. More than quite a bit. Hell, it upset me a lot.

It is not that I am intentionally slacking on my hygiene. It is that when I am in a lot of pain, so fatigued and my scalp and skin feels on fire... I figure one day of not showering when I have not done anything that day will not be such a freaking big deal. But, yeah, well he really made me feel bad about myself.

Then I got to a sort of angry state. I guess this means I will shower every day, no matter what. But I will remember why I am doing so. And I will not be happy about it. He implied this made me less appealing you see. And can't get more hurtful than that.

More cowbell

I think... I really think my life needs more cowbell. If you like Saturday Night Live then you will get the reference anyway. Love that skit.

By that I mean it needs more Joy. I think we could all use more joy but definitely those of us with chronic illness. Fatigue I think really drains us a lot. We are just really dragged down to the point we have no energy to engage in the things that give us joy.

We should not avoid joyness. Even if that is watching a joy that makes us laugh a little.

Nothing wrong with being a night owl... but the world isn't

(Source: s-obrenos)

I have been an insomniac since I was a kid. I have some fond memories of it really. I don't think it ever really bothered me that much as a kid that I Could stay up later than everyone else. I enjoyed the peace and quiet of it. I love to read at that time. To write. Still do. It only became problematic when I went to university and had more early classes. I mentioned it more than a few times to doctors but they do not do anything for chronic insomnia... except give you those some sleep hygiene tips you have already learned about years ago. And those tips are essentially:

 • Avoid stimulants such as caffeine up to four hours prior to bedtime. Caffeine builds up in the body through the day so it is best to avoid after lunch. (we should avoid simulants anyway… but seriously this is hard to do when you feel so fatigued from Not Sleeping)

• Maintain a consistent sleep pattern of waking up and going to bed at the same time. (Well going to bed at the same time, not necessarily falling asleep at the same time obviously)

• Avoid late night snacks. If you do snack stick to small snacks that have a lot of carbohydrates in them as these tend to aid in making you feel drowsy. (I pretend chips count, but let's pretend I didn't say that.) • Never exercise before bedtime but try to exercise regularly even if that exercise is going for short walks, yoga or doing some stretches.

 • Have no distractions in the bedroom. No TV, video games, iPhone or laptops. Do not do your work in the bedroom. Or snack. The bedroom should be reserved for sleeping or sex and we don't want our brain to be associating the space with other waking activities.

• Make the room as comfortable as possible for sleep. Use blackout curtains to reduce light or a sleep mask. Use some method to reduce background noise whether that is earplugs, meditation music or a white noise machine. Ensure the room is not too hot or too cold.

• Do not take frequent naps but if you feel that you need to keep them under an hour. (I have a hard time with this one. I have the overpowering need to nap sometimes… being sleep deprived and all. But sometimes I set my iPhone alarm to wake me. And sometimes I ignore it)

 • Do not watch TV at least an hour before bed because it is stimulating for the brain and makes it difficult to relax. The same can likely be said for being on the computer. (Also if you are an insomniac like me, don't read a good book… or you might just read it to the end. Read a crappy book instead.)

I think most of us insomniacs are familiar with all this. I know my insomnia became more complex when I began to work. I learned for example I cannot work shift work, because my already horrible sleep habits do not adjust to different sleep cycles well At All... and this leads to a significant increase in migraines. I also learned that working itself, as in getting up early for work every day, leads to migraines because I am sleep deprived. I do not fall asleep well into the night. I do not stay asleep. But I have to get up early. It was the reason I was put on a sleeping pill in fact. My doctor at the time said I was in fact sleep deprived which she could determine by all the sleep paralysis I was getting as well as the morning migraines. They do help a little. Help for the morning migraines. Never helped for the status migraines though.

Which brings me to the additional problems with sleep. That being painsomnia. When you are in too much pain to sleep. This is quite an additional problem and a difficult one to overcome. I have tried self-hypnosis... but to be honest I can't even be hypnotized so no idea how I would do that on myself. I have tried meditation, and that at least has a calming effect. I have tried sleepy time teas. I have tried biofeedback.

The fact remains that since I am not working I do not fight it as much. If my body wants to stay up later and get up later, and this works for pain as well, then I will do it. For now. I like staying up late. I have always been a night owl. I always enjoy the time to myself I guess. And have always loathed mornings with a passion. Not to mention if I get up early, I get a migraine early, which is no fun at all.

It just doesn't work for anyone else. Appointments. Calling insurance people. More appointments. All these commitments the insurance company wants. Then the pain clinic. None of which are on my sleep cycle. Which is disruptive and migraine inducing. Sometimes I think I should just force myself back into societies routine, but that never worked out for me. Something in-between?

(Source: kingof5hadows)

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. 

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?

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.

#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.

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.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...