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Showing posts from June, 2016

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 exi…

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…

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 …

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, u…

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. WHY ATTEND? 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 wat…

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…

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…

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…

A paint nite out

I know you are impressed with my 'Skill',but I have to say if this was a pain therapy thing around here I would totally do it A photo posted by Nikki Albert (@nikkimalbert) on Jun 13, 2016 at 9:12pm PDT

Paint nite with Diana. I look a little shocked and that is because we achieved greatness. Lol well I successfully completed the objective. A photo posted by Nikki Albert (@nikkimalbert) on Jun 13, 2016 at 9:09pm PDT

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 …

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. WHY ATTEND? Your host, Dr. David M. Brady, is an internationally recognized expert in fibromyalgia and a staunch patient advocate for those who hav…

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 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 m…

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 n…

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 dr…