Pain infinity spiral

One of that darkest thoughts I have in high pain is this concept of 'no end to the pain'. Of forever. The chronic nature of chronic pain. I magnify that moment of pain and extrapolate it into the future. I think about how difficult it was to cope with all the years, decades, of chronic pain in the past... and therefore how every difficult it will be in the future. And it feels so very Heavy. So very exhausting to me. And insurmountable. I get locked into this horrible feeling of the pain infinity spiral. Where all I can think about is all that damned pain I have to look forward to. How difficult it will be to cope with. And it is based on all the experience I have from coping with all my pain in the past. What predicts future experience? Past experience. What do we know about chronic pain? It Does Not End.

Why do I torment myself with such thoughts? And the infinity spiral? It spirals to infinity. Dark thoughts about the misery before me and about how horrific this pained existence is spiral down and down and down.

Unless I stop them. And the only way to stop them is with contrasting rational thoughts. But we Know this to be true, right?

Exercise and chronic illness

I know exercise is a curse word to a lot of people in the chronic illness community. We are in pain. Why would we want More effing pain? But it is an important part of our treatment. The one I outline above is one I read about for chronic pain especially. It is re-training your brain to push back that alarm of pain, essentially creating a larger pain tolerance. Other would exercise and stop before the point of fatigue or pain. 

So I am writing this now, particularly, because I have begun to exercise again. I stopped when i went back to work full time because I can't do the two together. Too much pain and energy. Then I went on leave and when I came back I went to part time. So now I have more energy and time. It is now the time to add the exercise back in.

Turns out I am back at square one. With FM and hypermobility syndrome back at the beginning is essentially the entire time is painful. Grinding, gnawing horrible knee pain the whole time from the get-go. So I do that for about 2-3 minutes and stop. And this will be my routine for the week until my body begins to adjust to that and the fist minute will not be as painful, then it will be outrageously painful for the remainder of the time.

Took me 6 months last time to work up to 20 minutes of activity, and there was still a lot of pain involved in the beginning, but once your broke through that you could keep going to the Alarm pain. Because the pain is caused by different things. Hypermobility issues for the pain right away in the joints causing me immediate issues. And FM pain causing pain from just doing.

I know exercise is a difficult task. I know it adds pain when we are already in pain. That we don't want to even do it because we know it will be painful. That with exercise intolerance it is draining beyond belief. 

But this is a lifestyle choice we can make. It often shows in studies as improving various things from insomnia, to mood, to migraines and FM. I'll take it if I get a result on just something. 

  • But it is difficult- overall it is. But in slow increments it is easier to attain.
  • It adds pain- The idea is to not add pain, so you never want to get to that point of pain. Just feel it and stop. 
  • It add pain the next day- Which is why that is a down day. You can on this day do gentle stretches to ease the muscles and take an Epsom salt bath.
  • It causes immense fatigue- if this is the case, exercise to the point of fatigue and stop. Let that be your set point. 
  • You don't think it has a benefit- It does have a benefit to your health. Chances are it is going to change something for the better. Maybe the thing your doctor even said it would. Maybe something else. It certainly will not hurt you, if you do it carefully and slowly.
  • I feel like it might hurt me- If you feel that you might injure yourself doing exercise then you should go to your doctor and ask to be sent to phyio where they can give you are routine to build up specific muscle groups to help with your exercise.
  • I lack the motivation- I generally reward myself each week of success have have with something simple. Helps encourage me. Other people exercise with people as that tends to help. Or have online exercise buddy to motivate each other.
  • It isn't fun- Nope it is not. Therefore it is best to play some music you enjoy. Or do it in front of the TV. If you go for walks music or audio books is great. For the stationary bike I prefer music.
Also remember:

  • Be patient- it took me a month of riding a stationary bike at 10 minutes to get past that point from a pure muscle fatigue point. Not even to the pain issue. My timeline I was given to get to an hour of exercise was more than six months of consistent exercise by the pain clinic.
  • Allow yourself pain days- there is no point in exercising on high pain days. And no reason to feel bad about ‘ruining’ the routine. As far as I can tell I have no routine but I still manage three to four times a week. Just so happens it changes a lot to what time of day and which day of the week it is. Nothing wrong with that.
  • Don’t let anyone say you are going to slow, not doing enough, not doing the right sort. Any activity is actually good activity when it comes to chronic pain. It is all beneficial to us. Maybe not what some doctor read in his study, but you know I read a study that said 20 minutes of walking had a great deal of health benefits.
  • Never compare your progress to others- other people have different bodies, different levels of different conditions, different timelines. I know of some people with fibromyalgia that can exercise a lot and I am vastly impressed given my awesome start time of 10 minutes on the stationary bike but it is what it is. I have more than one pain condition and my pain is just at that point. I have to look at my progress day by day and not anyone else. Then when I got to 20 minutes I did a happy dance because it seemed like an insane improvement to me, relatively speaking.

Knowing your genetic risk

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

 I had this great opportunity to do a genetic test with Futura Genetics to test predispositions to specific conditions genetically. Of course, there are a lot of other factors but it is interesting to know your genetic risk factors as that is a rather embedded risk factor. I have always wanted to do this. My mom had done one once and I have been fascinated since then. Hers by the way showed a genetic risk to breast cancer and she recently just won her battle with breast cancer.

So why did I want to know? Essentially for me it is a knowledge is power sort of deal. I am chronically ill. And I know that this does not prevent me from gaining other illnesses. Quite the contrary it seems to me. Seems like comorbid conditions just spontaneously crop up in bundles.

1) The family history you didn't know: There are some risk factors in my family history I know about. Some I have no idea if they are risk factors for Me. While others may be there and I have no idea. This sort of gives you an idea of the history you are not aware of.

2) Know your risk factors for prevention: Knowing enables you to engage in prevention you might otherwise not have considered. Simply put if you have no idea you are at risk for a certain disease genetically or otherwise, why would you even engage in preventative measures specifically for that condition?

3) Watch out for early signs and symptoms: This is an important one for some diseases. Early signs and symptoms means early management. Just being cognizant of certain potential conditions you are more at risk for means in the future certain symptoms may not slip your notice. Being chronically ill... well I generally do let some symptoms simply slide if I don't rank them as important enough. And some other ones if they are pain related I just simply assume they are related to existing pain conditions. Others I may wait to 'see what happens'. But if I am aware that a condition is a risk factor for me, I will put more emphasis on its importance in regards to mentioning it to my doctor.

4) Informing my doctor: This will be a tool for my doctor to use in regards to my future risk factors.

How it is done:

Tips for when you are in The Flare

I am in a Flare. The pain arching through me right now is difficult to describe to be honest. It is a deep, bone deep, throbbing ache that is at around a 8 on the pain scale. It is extremely distracting. It is gnawing. Grating. And that is when I am not moving. Moving is another story altogether. 

In this particular case it is from weather changes. We have been having hot weather and flash thunderstorms so the pain as a result as been pretty intense. Migraines, as you might expect, following suit.

It isn't only the specific keyed up areas of pain though. It is the body aches as well. Feeling just run down. And the extra bonus of fatigue. Not your normal fatigue... more bonus fatigue. Like the extra bonus pain. A flare-up is just FM Plus.

I am currently on tramadol slow release for my actual treatment, so I have nothing for a flare-up per sa. I have to work tomorrow so rest is out of the question. As is stress avoidance. So I'll be waiting it out. The approach I most often take, unfortunately. 

For me most flares come with overdoing it. I have limits, I just sometimes am not positive where they are or ignore them. Or, worse, the limit changes. One day I can walk for an hour with no consequences. The next day 15 minutes causes extreme pain and that pain increases exponentially the more I walk. So I engage in an activity, in moderation, expecting it to be fine and it is So not fine. FM can be unpredictable like that. 

Poor sleep is another common one for me. But it is unpredictable. Often is is more than one day of poor sleep that flares me. One day? That is par the course. And yes, it causes aches. But not flare-up pains and aches. Not FM Plus. But a few days of severely deprived sleep and I will flare big time. Even laying in bed to continue trying to sleep is too painful then.

When having a flare-up here are the tips:

  • Taking breaks- since they tend to occur during high stress we tend to not engage in self-care. If we just push through, we pay for it. We should try to help from others, at work as for extended deadlines and reschedule the things we can. Try to reduce the stress factors we Can. Take breaks during the day. Take short naps.
  • The say 'no' tip- In times of Flares it is really important to conserve your time and energy reserves. No, you can't take on extra work. No, you can't do that favour for a friend or the school. No, you an't babysit at this time. You don't need to use an excuse, because you don't need to validate your illness, just a polite not at this time. You just cannot take on any more at this specific time.
  • Sleep- Sleep is always a factor for us. And adequate sleep is more important during a flare. Keep to a regular sleep cycle. Get 8 or 9 hours. Only take short naps during the day, as to not disrupt night time sleep.
  • Relaxation- Take time for mindful meditation, relaxation breathing or biofeedback... whatever works for you. As well as any pain distraction methods you use; like soothing music, reading or binging on Netflix.
  • Pacing- We can keep doing activities, at a slower pace, which has been found to be better than no activities at all. But we need to know our limits. Slow and steady. We can incorporate some very gentle stretching, walking or light yoga. If you have an exercise routine already, consider decreasing intensity during a flare.
  • Pain management- Use your medications following the schedule you use to manage pain. If they are not sufficient ask your doctor about breakthrough medications. Use alternative treatments you might find effective; acupuncture, massage therapy, biofeedback and other therapies to help with pain management.
  • Support- Flares are an emotionally heightened time and can be difficult to deal with and sometimes talking about it helps. So utilize any support groups you belong to. Either online, in real life, or the people in your support system like friends and family.
  • Baths- I always recommend a nice soothing Epsom salt bath to ease some muscle pain.

Generally you want to engage in your Self-care. You don't want to stop your routines, but be gentle and careful. Self-Care is vital at this time. Take things more slowly and methodically. Be gentle with yourself. Pace yourself. 

The Fibro-Fix Summit reminder post

So the Summit is almost on us. Time to sign up for free now if you want to attend. I will be posting the speakers on my Facebook page as the days come up so you can see who to check out.
SUBJECT: Misdiagnosis and improper treatment of fibromyalgia is rampant!
At The Fibro Fix Summit, you’ll learn why proper diagnosis and treatment of fibromyalgia (FM), as well as other fatigue- and pain-related disorders, is a neglected and poorly understood niche in medicine. These experts will discuss FM and the many disorders improperly labeled as FM, to provide real action steps and solutions.
Your host, Dr. David M. Brady, is an internationally recognized expert in fibromyalgia and a staunch patient advocate for those who have been struggling because of a medical system that is ill-equipped to deal with the problem. Join him and 30+ experts for this iconic event that could change your health and your life!
Register for FREE now at the following link:HERE
Own all of the expert talks to watch at your own pace:HERE
Attend The Fibro Fix Summit if you are suffering from:
  • Body-wide Pain
  • Persistent Fatigue
  • Unrefreshed Sleep & Insomnia
  • Depression and/or Anxiety
  • Irritable Bowel Syndrome
  • Thyroid and/or Adrenal Dysfunction
The Fibro Fix Summit is online and free from June 20-27, 2016!
Register for FREE at the following link today:HERE
Own all of the expert talks to watch at your own pace:HERE
I’ll see you at the summit!

6 things for the healthy in our lives to know about chronic illness

It isn't always easy to be a friend, loved one or family member to someone with a chronic illness or chronic pain. It isn't easy to forgive plans missed. Or when they seem to never want to engage in activities. You wonder if it is you. You wonder if they are becoming too reclusive. You might even tell them they need to get out more.

Frankly the truth is getting out and socializing is very important to us. It helps us with our mood stabilization and sense of isolation. Sometimes though it depends on what it is the plan is for. We may very well say yes to playing cards at a house, or going for coffee or having a BBQ... and no to going to a concert or the bar. Depending on the day one thing may be too much. Desire isn't always the factor we have to consider. We want to be out and about. To see our friends, spend time with our partner and spend time with our families. If you take anything from this, never doubt that.

We have immense guilt when we feel we are failing our loved ones. When we miss plans. When we feel we are not being there enough. When we are just not Enough.

It is really easy to understand a person with chronic illness and chronic pain if you know a few things.

1) Think Tortoise: You are the hare. We are the Tortoise. In this lovely fast paced hectic society you can keep pace, we cannot. We have to pace ourselves. We have to take breaks. One example; have you ever cleaned your house in a massive clean-a-thon? We would never be able to do that. We have to pace all housework. A little each day. Some days, bad days, none at all.

2) Think Moderation: Ever thought well, on the weekend I will catch up on the housework, take the kids out to the beach and then go visit the parents... just pack in some things for fun? Not us. We moderate our lives and that includes all activities. Think of it like having a full tank of gas vs having a 1/4 of a tank. You can get a lot father than we ever can, so we are careful of what we plan because we only have so much energy to get there with.

3) Think worst day ever: If you imagine the worst you ever felt. Like maybe the worst stomach flu ever and times that by 10 you might imagine us on a bad day of a chronic illness. With chronic pain, well lets just say that is epic pain level days. We have these epic bad days. And on these epic bad days we cannot function.We may have made plans and we may have really wanted to do those plans but suddenly we cannot do a damn thing.

4) Think exceeding your limits: Imagine you have not exercised in a decade and then you went to the gym and did a 2 hour workout. Imagine how you felt the next day. Every muscle on fire and walking like Frankenstein. If we do not follow 1 & 2 we exceed our limits and when we exceed our limits we end up Flaring and that is what it feels like. Like your body just said Nope and suddenly you are in 3 and having a really bad day all because you didn't follow the chronic illness rules of pacing and moderation and limits.

5) The life: And this is the life. We always have baseline pain, fatigue and symptoms that are bothering us. Sometimes they are worse than others. Sometimes much worse. And the best we can do to cope is do our best to maintain. Pacing. Moderation. Not exceeding our limits. We do this and we have a life, but like I said, we are the Tortoise, man. We plan do do things when we have down time after. What we plan to do depends on many factors; how taxing it will be, how much energy it will take, how far always it is because drive time takes energy and what medications we will need to bring just in case.

6) Lifestyle: As long as you understand the above you will understand why we miss plans. How we set out plans up. Generally how we pace ourselves when we do things. Why we turn down somethings but not others. How careful we have to be. The other aspect to our lives is all the things we do to help manage our condition. These vary from person to person but can include: alternative treatments, vitamins and supplements, exercise, physio, meditation, biofeedback, psychologists who specialist in chronic illness and coping, medications. This is the Lifestyle. This is all the things we do to help maintain as best we can. We don't need advice about it, because we have likely done it. It is merely the things we have established with the assistance of our doctors to help maintain the best quality of life that we can.

Never stop caring. Never stop loving. Never stop inviting us into your lives. Just understand we live the chronic illness lifestyle and it is just a little more careful, energy conserving and has some defined limitations we have to manage. But we want a life. And we intent to have a life with out illness.

Touch of madness

I used to say it is literally insane to try and function through the pain. What I really meant is it is insane to exceed our limits because society demands it of us. Doctors, insurance companies, family or loved ones may demand it of us. And it is impossible to cope with riding that edge of pain like that. Insanity. Something needs to be adjusted in order for us to cope with that. I personally adjusted in a few ways but one of them is not working full-time and that is still pretty damn taxing.

But I have decided that a touch of madness is needed to just plain adapt to the insanity of functioning through pain at All really. We have this amazing capacity to adapt to pain. I mean, I exist in pain levels that my younger self would curl into a little ball and refuse to move under. While this isn't exactly an awesome superpower it is a fundamental adaptation if you have chronic pain. As far as I can tell I wouldn't get very far curled up in the fetal position all day long. 

So what do we do? How do we Do this?

1) We sort of lie and nudge ourselves along- We lie to ourselves a lot. And we make ourselves believe it long enough to get through that thing we have to do. Just need to get out of bed and it will be all right. Just need to get dressed. Just need to get to work and once I am there it will be fine. Just need to get through this hour. Just need to get to lunch and I can have a break. Just need to get through a few more hours and I can get home. Lie, lie, lie. Sort of just nudges to get ourselves to certain goal points really. 

2) We create facades- We create entire alter-selves in order to cope with functioning. Because pain sucks and having to cope with pain while out in society sucks even more. So we adapt by presenting ourselves in a certain way. My favorite is I created a stronger sense of humor. I smile and laugh. This puts me in a good mood. Makes me believe it as well. It masks the pain incredibly well. I am able to function better. I don't put all that negativity on myself, which inevitably makes me feel worse when I am in pain... so I am essentially faking myself out. Like that study that said even faking a smile makes your brain release the same happy chemicals as a real smile... I just presented myself that way until I felt that way. Makes my day better than the sarcastic, negative person I generally am. Because That person doesn't cope with pain quite as well. 

3) Gallows humor- We all seem to develop wonderful gallows humor. I once had someone ask me why I laugh at myself and my illness the way I do. Why I make 'such jokes' about my illness. What can I say to that? Almost want to quote Lincoln on that one. "I laugh because I must not cry. That is all". I find gallows humor about my illness funny at least. And for some reason it just pops out. Can't say everyone finds it funny. That is just too bad. If you can't laugh at yourself, who can you laugh at? If you are in a hard situation long enough... you learn to laugh about it. But generally that sense of humor about it is truly only enjoyed by others who suffer as well. 

4) We do weird things in the name of pain- We will damn near do anything if it helps with our pain and screw anyone that thinks we are weird. I slather this Japanese mint oil all over my forehead, temples, and down my jaw. I constantly smell of Japanese mint oil. It is now my official fragrance. I meditate. And while that isn't weird... I would never have meditated a day in my life if it were not for pain management telling me I had to. We pick up hobbies to distract ourselves from the pain. New hobbies we never had or even thought of before... just because focusing on something Else helps. Like knitting. Suddenly becoming a knitter. Or coloring. Which is a fad now, so we seem cool doing it but we are just trying to mellow our brains. We will try anything that helps the pain and anything that distracts the brain. Imagine for a moment if you listed all those things if someone asked what you like to do for fun? "Well, I meditate, color, Netflix binge, took up painting, do poetry, blog, write novels and I was thinking of picking up a hobby."

5) and finally we have a touch of madness for the routines we have to cope with pain.- We exercise. Meditate. Do physio work. Maybe biofeedback. Take vitamins and supplements. Take our medications. Take walks when we can (to get some fresh air they say). Special diets. 

But you know I think it is just that touch of madness, that spark of insanity, that gets us through the pain. We have our own way of existing in the world for sure. And I think it takes this to get though a mad world. To survive a mad world, and function in it, we need our touch of madness to get us though. Madness that say I can cope today, because I coped yesterday and I will cope tomorrow because there is that thing I want to do. Madness that says you will cope or Society Wins, and can;t have that now can we. Madness that says this is my life and I deserve to live not survive. Madness that says pain should be treated not ignored. That touch of madness knows society is insane, we just have to have a touch of madness to endure it.

Things I want people to know about my invisible pain

My pain may be invisible but I am not. I am a whole person aside from my pain who deserves to experience life.

1) I want doctors to understand: I want to have quality of life to be able to function in enough capacity to live a decent life. And I fully expect them to assist me with proper pain management. I understand pain is complex and the treatment of it is likewise complex. I will do all in my capacity to follow their instructions and do what I need to, to manage the pain and reduce my suffering. If they are willing to assist me do this.

2) I understand the invisibility: I get that people cannot see the pain. I have been called stoic so often it isn't That amusing. It is simply a matter of this: with acute pain there are some obvious behavioral pain indicators people are tuned to pick up and with chronic pain we lose those. We lose those because we are in pain all the time. It is the name of the game for us. Those become redundant. However, we have a new set of pain indicators unique to us if you Know us. For example I rub my neck with a migraine a lot. I shift position with Fibromyalgia pain frequently or begin to move slower. I wear tinted glasses inside and sunglasses and/or a hat outside because of the migraines. We have our tells. They are just different than the other ones.

3) I understand the confusion: We become less invisible during flares and severe pain levels. This is often when people think we are in pain. We try to explain we are always in pain. But they say we were functioning one day, and not the next. We were smiling one day, and then all pain faced the next. Pain has variability. And we ourselves have pain limits. We have baseline pain that is always there. We have pain we consider functional with. We have pain that is hard to function with. And we have pain we Cannot function with. Pain that is tolerable and pain that is intolerable. Just understand we ourselves cannot handle all levels of pain we experience. We cope the best we can, but there are limits to that.

4) Coping isn't quite that easy: Frankly I want people to understand coping with pain is extremely difficult and sometimes I do not cope well. It is an endless battle with no victory and I get tired. It is an unseen battle and it is exhausting frankly to live in a society that is not paced for the life I have to lead. Coping isn't a linear event where you work your way to acceptance and just settle in for the ride. Life isn't like that and neither is coping. We can get caught up in depression bouts. We can get angry and frustrated. We can even go back and start with denial all over again when we insist we can do something we want to achieve, even though we know we have limitations... then this leads to angry, frustration and depression when we ultimately realize we simply can't. This is not to say we can't overall be in a place of acceptance. It is just that life is complicated and so is coping. There are rough days and times. Pain is a demand on the senses and it demands attention. It demands a lot from us and this can be extremely taxing.

5) Facade: I want people to know I fake being well all the time. I mask the pain and I do it very, very well. Primary for the benefit of others. For employers, co-workers and customers because at work you have to have your game face on. And for loved ones, so they do not see the extent of suffering. For my doctor so I do not get stigmatized as a drug seeker, a chronic complainer or as exaggerating. In a sense this does contribute to a sense of isolation and the fact that no one can see my pain, but it is the only way to function in society with chronic pain.

6) Depression complicates things: Depression from pain can occur due to the fact pain is difficult to cope with. Faced with an indeterminate lifespan of pain (decades and decades....) having already experienced decades it is easy to feel hopeless. High levels of pain can really cause deep depressive episodes in me and really dark thoughts. I see a pain psychologist for this and take medication as well because managing my moods is an important factor in managing my capacity to cope with the pain.

A paint nite out

I went to a paint nite with a friend and it was quite fun. We unfortunately picked an intermediate painting for beginner skill level, on my part at least. Not to mention with my never damage I suspect I will never be a true to form painter... more abstract will be my thing I suspect.

Nevertheless if they offer art therapy here I have decided I would go for that based on this very interesting experience. But they, of course, do not.

It was social and relaxing. And I realized being the perfectionist I am I would never realize the perfection in my mind... and I was cool with that. You paint based on an image, you see, and this is my sort of distorted representation of that image. They give you steps up to a point anyway. Then it is just use your creativity. And thus my masterpiece.

I decided to do this because I wanted to get out and socialize for one. And I thought it would be fun to experience. And it was.

Yes, I indeed had a migraine and, yes, my FM has been acting up lately. But this is not a reason to prevent me from doing something I have always wanted to try. Just to try it. Had my pain level been extremely high that would have been a different matter. But it was in the range of 7ish and I can tolerate that just fine. I had after all made it through work. Why not do something I would enjoy? Or at least hope to enjoy?

I feel it is a majestic piece of artwork because I made it. And I am going to damn well hang it on the wall as well. I believe my friend to the left on this photo did a much better job than I... some serious talent consider neither of us have ever done this before. She has a better eye than I do. And steadier hands as well. Either way, it is great to have that time to spend with friends.

Sometimes you just have to understand the pain will be there no matter what you do, so do what you please... within moderation. If you choose an activity you can do, all the better. This is an achievable activity for me.

Poem: Chronic Pain Lifestyle

I have not written a poem in quite some time. I blame it on the depression to be honest. High pain and depression sort of sap my creative energy. This one isn't in my usual style but I was pleased to have produced anything at all. 

Chronic Pain Lifestyle:

I fight for my right to a life;
Lived in survival mode and strife.
Don't try to put shame in pain,
Not while I just fight to stay sane.
And what is with all this blame?
You're not even part of the pain game.
Don't tell me I am wrong for surviving,
When I almost gave up striving.
I fight every single day,
To live with pain and stay.
Don't judge how I survive this way,
Maybe you'll find out someday.

Summit: Fibro Fix

There is a Fibromyalgia summit going on in June. From June 20-27th. You can register for free. The idea is to get a bunch of experts on a variety of topics together for patients to be able to get informed and learn interesting things about research, treatment and alternative treatments. I signed up for a few summits that interest me personally so I thought I would share them as they crop up. Personally I love this concept. That we can hear directly from these experts on different topics. So I look forward to this one. 

At The Fibro Fix Summit, you’ll learn why proper diagnosis and treatment of fibromyalgia (FM), as well as other fatigue- and pain-related disorders, is a neglected and poorly understood niche in medicine. These experts will discuss FM and the many disorders improperly labeled as FM, to provide real action steps and solutions.
Your host, Dr. David M. Brady, is an internationally recognized expert in fibromyalgia and a staunch patient advocate for those who have been struggling because of a medical system that is ill-equipped to deal with the problem. Join him and 30+ experts for this iconic event that could change your health and your life!
Register for FREE now at the following link:
Own all of the expert talks to watch at your own pace: The last summit I watched I couldn't get to them all... migraine days and all. So they offer the series in its entirety for sale to watch at your leisure.
Attend The Fibro Fix Summit if you are suffering from:
  • Body-wide Pain
  • Persistent Fatigue
  • Unrefreshed Sleep & Insomnia
  • Depression and/or Anxiety
  • Irritable Bowel Syndrome
  • Thyroid and/or Adrenal Dysfunction
The Fibro Fix Summit is online and free from June 20-27, 2016!

Survival mode and pain management

There are a lot of people living in survival mode right now. It is not meant to be lived in. It is meant for short a duration. Yet due to lack of pain management we live in it. Every day is merely how to get through that moment, that hour, that day, that week. And nothing unnecessary is included in this survival mode. Go out with friends? No, no energy left for any socialization. Engage in a favorite hobby? With what energy? Exercise like you are supposed to? In what world is that even possible with the pain you are in, right? And then it would make it even worse for the next day. That is simply out of the question. No, it is get through work, crash and burn at home to suffer in peace. Over and over and over again. It is an existence. Not a life. And many, many people are stuck in this survival mode due to lack of proper pain management. I foresee many more will be added to the list now.

It is a dangerous state to be in. Often it leads to sleep deprivation because by pushing through the pain, pain levels are high, when pain levels are high, we cannot sleep. Leading to painsomnia and then sleep deprivation. Sleep deprivation and high pain leads to mood regulation issues of depression and anxiety. For me this was my danger-zone for suicidal ideation.

I lived in the zone of survival mode for years. It is a horrible pain filled, isolated hermit existence. And you feel there will never be any escape from it. Because in general no one has any real desire to put any effort into actually helping you. I have pain. I am having trouble coping with this pain. My medications are not working. And nada.

Is it to much to ask for some quality of life? Some actually life in there? Isn't it actually the aim with chronic pain to be able to manage our pain and suffering to the point that we can have a life? That we can socialize, which boosts our mood. That we can exercise, which boosts our mood and helps with chronic pain management. That we can maintain our work without missing too much; even if this takes compromises to achieve... that we need to make those compromises for our health. That we can meet our social obligations, family obligations? That we can engage in our favorite leisure activities. Stay within our limits and moderate our activities, of course... that is a must, but have a life. That we can function like a normal human being with limitations? Quality of LIFE.

If that is the aim then why are so many pain patients ignored? Treated like drug-seekers or drug addicts. Or refused treatment that could give them that quality of life. Or is that no longer the aim? What is the aim when they see a pain patient now? We will not really help you with your pain because you could be of the fragment of people that could become addicted, or maybe you are an addict... although they generally get their painkillers elsewhere... so I'm not really going to deal with that whole pain thing you have going on Just In Case. If you are not, then sucks to be you.

Pain untreated affects concentration, mental clarity, focus, short term memory, working memory and long term memory. Just not processing speed. More pain the more space in the brain is taken up with that and less is there for anything else. Try thinking through high pain levels. It is extremely difficult. Untreated pain basically means... lower income because someone likely will be forced to reduce their work to part-time or change jobs to something they can focus on easier. With treated pain it is the hope the person can maintain their actual work and continue on their career path with the right accommodation. It isn't always possible sometimes the actual treatment might suggest working part time. Sometimes exceeding your limits means downsizing the work.

Are we as a society condemning chronic patients to pain? Hell condemning them all as addicts when we all very well know not everyone is even susceptible to addiction, but labeling everyone drug-seekers anyway. Shaming them. When they are actually seeking relief. Is that what the opiate epidemic is about? Condemning patients to pain and locking them into survival mode forever. What does that say of us as a society that we find that acceptable? Let them suffer? Let them suffer because the 10% who have the potential to become addicted, and who are getting their painkillers from other sources and who will still have an untreated addiction problem... will not be able to get their painkillers from the source they were not getting it from the first place. So, then, all the pain patients, some with pain even I cannot fathom will have to suffer and suffer.

What sort of society finds that okay?

What sort of medical society finds that okay? Not looking to a patients pain and quality of life?

These are the things I want to know. I endured survival mode for a brutally long time. And almost didn't make it out alive. It is never meant to be endured long-term. The body isn't made for it. We cannot last that way mentally and emotionally. I can tell you how I got out of this state, but it required pain management and, hell, if I even know if that is possible these days. Not that pain management is all about medication, but it certainly is partly for people who have responded to no other medications that medication may very well be an opiate.

The punishment and the reward

On Monday I was having a bad day from the get go. I had a very poor sleep. I woke up and the pain just smacked me in the face. I bent over to pick up something from the ground and just about threw up from the massive wave of pain and assaulted me. Then you know my depression says to me, why go to work, it is going to be just a long, arduous torment. You are so tired. Just lay back down and go to sleep. You know you want to.

But I didn't. I went to work. It wasn't easy. I told myself I could get through it. The next day I had off. What was 8 hours? Well... 8 hours is 8 freaking Hours when you are in pain, but nevertheless I did it. And sometimes I just can't muster up the energy, the courage, strength or motivation to do that. But this is chronic pain and it isn't going anywhere I tell myself. This isn't like working full-time, I say, where I was completely exceeding my pain limits. This is just a very bad pain day. And there will be very bad pain days.

I am very methodical on bad pain days. Most of my focus is on the pain. The brain takes all that energy just surviving the pain it doesn't have the space for much else. I tend to confirm things a lot with customers. Make them repeat back to me what they wanted. I know it sounds repetitive but I need to hear it again so it sticks in my brain. And I double check my work. I want to be consistent. I want to make sure it is all done right. And I remind my perfectionist self it actually is human to occasionally make errors. Just happens. Not that customers forgive that, but sadly it is true. Nevertheless I want to ensure I am in the normal range of that.

My psychologist gave me a tip for these bad pain survival days for when I achieve the momentous goal of getting to work. Reward myself. Now there is very little I generally reward myself with. I am not really the type of person that buys much of anything. Except books. So he said reward myself with a book. Right away. So the brain acknowledges the fact that getting through that day means getting a reward. So someone is getting a ton of books!!!!

This concept is a good idea. I can't miss work and part of the problem is the depression that comes with a increase in pain. And depression saps my motivation. It just doesn't want me to function in pain. Well who does? But I need to function in some capacity in pain. I need to cope in pain and I need to manage the depression by acting. Acting helps with motivation. Just doing until they brain understands action is a good thing. Until it understands that actions lead to many good things. Many other types of rewards.

It isn't easy because pain in the morning at high levels is tremendously exhausting. I have not done a damn thing and already I can't imagine getting through the day. Pain when it increases as the day goes on, which is my normal pattern, I am used to. I am already at work and I just get through it. Just maintain until I am done. I am already There after all. I have never left work from pain. No matter the intensity. It has slowed me down, mind you. I mean a 9 level pain at work will really inhibit your capacity to function. And you don't get much done, but I have better pain management options now for 9's at work so there is that. More often than not I am a 8 at work and work up to the 9 at home into the evening. And good days I stay at a solid 7. Starting at a 9 is something altogether different. It is horrific to think of doing anything. So I start by aggressively treating the pain and the nausea. Taking some B12 for the fatigue. Slowly getting dressed. Then making that Choice to walk out the door. And survive the day by inches. Crawl through it. If the pain management works part of the day will go down to an 8 before going back on up again which was how Monday worked out for me.

What I had been doing was trying to aggressively manage the pain, sleep, and go into work for a half day. This obviously works a great deal better, but isn't sustainable with work. Work is work. They can't accommodate half days randomly when they have me scheduled for a full shift just because my body doesn't want to co-operate.

So get through it.
The next day is a day off from the way I have accommodated my schedule.
And reward myself. With a book.

Is it sustainable this working part-time? I have no answer for that. It is a trial as I go sort of deal.

The pain game is not a game you win

No disability is the same.

I had someone comment to me on social media. 'You don't know pain.' And I replied 'I know My pain.' Because that is the pain I have access to. It is a private experience. I know my suffering. I know my pain.

And I know the commonalities we all tend to experiences. Things we all seem to struggle with when coping with pain. Like being in denial and still thinking if you push through you can still do what you did before. Or feeling guilty or angry that you are no longer capable of what you could do before. Guilty you are not as produce. That is what makes our individual experiences relatable. I have this pain, you have that, but we experience similar responses to it. Anger, frustration, anxiety, depression, acceptance, hopeless....

But we are individuals with different conditions. Their own pain, own pain tolerance, own responses to pain, own suffering, own responses to suffering and own coping skills and habitual coping habits.

We should never:

1) Deny someones pain or diminish it or minimize it: Like that fellow did for whatever reason. You know nothing of pain. You pain is nothing compared to mine. I wish my pain was as mild as That. You can't have fibromyalgia because your symptoms are too mild.  Some people like to diminish other people's suffering by making it sound like it is nothing compared to their Monstrous suffering.  It is rude to disregard and diminish someone else's pain experience, which might be quite a bit worse that you think looking in, just because you want to be king of the pain pile.

2) Don't play the pain game: No one know what these people are trying to win here, but often they never answer the persons question just up-pain them.

Person a: I am walking for exercise. Any other FM friendly exercise to try?
Person b: You are lucky, my pain is so bad I can't even leave the house.

Person a: I've had three migraines this week and it is getting to me. Anyone tried mindful meditation and would that help to relax me more you think?
Person b: You are so lucky to have that few. I have migraines every day, non-stop.

Some people like to prove their pain is worse than everyone else's. I don't know what type of award they are tying to win, but it sounds like a sucky one. But there are exceptions to the rule. In a thread where that is precisely what you are talking about; how sucky your day is, what your health is like... that sort of thing. It is not one-up-manship then, it is just sharing how you feel.

3) Don't Judge the particulars: because everyone is different some people's illness presents differently. And people sometimes think that means they are lying, exaggerating, don't have the illness at all or are suffering less as a result. They get judged for it. Debating the particulars isn't fair to someone who is coping with the same illness, presenting in a different way.

We are all different. So everyone we meet is having a complex pain experience. Mood, mentally, physically rolled into one. And that Pain Experience resembles yours in its commonalities but not in the particulars.

Our pain matters

This week in British Columbia  and Nova Scotia, the colleges of physicians of surgeons adopted new guidelines on prescribing opioids, based on those from the U.S. Centers for Disease Control and Prevention.  
Juurlink welcomes the CDC's recommendations, because they discourage using opioids liberally and give suggestions on limiting doses. He remains reluctant to prescribe fentanyl to his non-terminal patients.
"The goal is not to put a patient on a drug that is self-perpetuating and difficult to stop," Juurlink said. "I think until doctors and patients start to appreciate that phenomenon and confront it, we are going to continue to mismanage patients with chronic pain by putting them on opioids for years at a time at high doses in the absence of medical evidence that that's a good thing to do."
There are specific situations where it might be appropriate to prescribe for chronic pain, he said. For example, if someone has debilitating osteoarthritis and other drugs are inadvisable because of kidney or stomach problems, Juurlink said he will occasionally turn to low-dose opioid prescriptions. When he does, he ensures the patient understands the risks and plans an exit strategy.
"It's a very difficult conversation that doctors face every day with these chronic pain patients."
When putting a new patient on an opioid, it's impossible to know who will benefit, suffer side-effects or spiral into addiction.  
Stopping the drugs is also fraught. Many patients are convinced they need the drugs because of the physical dependency and sickness that occurs when trying to cut back.
"There are so many people around the country on high-dose opioids, it's very difficult to craft a cogent argument they're being helped by these drugs," Juurlink said. "Many of them I think would be much better off, from a depression perspective and a pain perspective, if we could gradually work them down to more sensible doses." CBC News
I worry that Canada, where I live, two provinces have adopted the American CDC recommendations on opiates. First, we are not the same. Second, they are in a stirred up frenzy from the skewed media and I thought we would deal with the situation with a little common sense.

I actually think we have less of a opiate addiction problem within the chronic pain community as an actual pain management problem. Pain management is really quite sadly lacking. That is never addressed. And now, will every be less addressed. It is really quite disturbing to be honest.

Opiates are part of some treatment plans. And there are the last resort as it is. They are very necessary in other treatment plans. Because as we all know well pain killers are not that effective at treating pain. They are just the best at what we have currently to manage it for some patients. But they don't actually do that well of a job and you have to deal with tolerance and dependence issues. They just dull the pain a little really. They are meant to help with functionality and quality of life. Remember that. Quality of Life. Take away opiates in those where it is Necessary and you are lowering their quality of life.

Chronic pain research really has yet to come up with viable alternatives. Research is just so new. And new studies are coming out every day, but I don't see anything actually out there to help any of us. Right now it is all how about you exercise and mediate and don't think negatively. Well, I don't know about you but when you are in a crapton of pain that only gets you so far. Actually, doing those things it helps when your pain is being managed, otherwise it is rather... difficult. All those suicidal thoughts get in the way. Or they did for me when my pain wasn't at all managed. Meditate... on the pain. Think about... how much pain you are going to have for the rest of your existence. Don't even think about exercising. Don't even think about working. Don't think about leaving the house. Socializing. Doing anything. Pain, pain, pain. Don't think about having a life. Think about ending it though. So what if opiates are part of your pain management? Shouldn't a pain doctor have that tool at his disposal? I was on Lyrica, Cymbalta and more and they did nothing for me. Cymbalta Caused suicidal ideation and intent, which I hardly needed. Yes, those options needed to be explored, but don't think they don't come without a lot of side effects and risks of their own. And if there is not actual effect going on what then?

At a certain point if you lower that quality of life and increase that pain enough, you will get patients with suicidal ideation and intent. Pain is a suicide risk factor all on its own. Doctors should know this. Suicide happens when pain exceeds the capacity to cope with it. With pain management you can teach all the coping skills you want... but it the pain gets extreme, they have no quality of life, then they are going to have issues coping with it... those strategies that helped them manage before will fail. It happened to me. I coped well and then the pain increased and I could no longer cope the way I did, the pain exceeded all those strategies. Medications tried didn't work. Pain got the best of me. Sometimes it still does to be honest because it still is barely managed even with the coping strategies I have. It is difficult to manage.

I have never in my life had a doctor hand out opiates irresponsibly. Never been on any strong opiates long term at all. Primary doctors tend to do what they ought to do and try alternatives first. All those off-label medications. Maybe for far too long. In my case, quite a long time. Too long it turned out. And I am currently on a slow release tramadol for FM, daily chronic migraines and hypermobility syndrome from the pain clinic. Personally I think it is very mild painkiller and I say that because my pain quite exceeds it. Just maybe that is why I am on it. Just imagine the pain without it. But you can't. Just maybe I wouldn't be on it if anything else worked. Certainly I wouldn't care then would I? If anything else worked I wouldn't have been sent to the pain clinic. And I would have managed pain. And I would still be working full time and have a career. Maybes are all nice and snazzy if life were perfect and pain was easy to manage. But sometimes, it is complex. Sometimes there are no easy answers. My neuro(s) told me I simply do not respond to medications and that there is nothing for me. Maybe they are right and maybe research will catch up to my brain someday soon. Maybe pain complicates pain.

I have this preference for not wanting to die. Isn't my life worth more than dying by suicide? Isn't every ones? I wonder how many people will be left in that place I was not too long ago. How many people are now. That raw desperate place so full of pain. That existence by inches. We already have a pain management problem. How worse do you want to make it? I'd like to believe they will treat the pain that matters. But from experience I know they won't and opiate hysteria will not help. Shaming the patient will not help.

Our lives matter. Our pain matters. Who gives us a voice in this? That we deserve to have a quality of life?

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...