Silent minority

 

My pain is a burning star in the night sky.

We are not alone. So many people suffer with chronic pain. The numbers are staggering. Billions. We are a pretty silent billions though.

 

feeling down

I often feel we are a silent minority. That no one wants to hear about our plight.

One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.

—  -New Yorker, “What’s Wrong With Me?”

In the land of pain everyone will get used to it but me. It will always be fresh for me. Old news to everyone else. They tire of it. Other people do not want to hear about it. They want your functionality. They want you to pretend to be normal. To strive to be so, even when you have limitations they don’t seem to comprehend. They want you to push through the pain because isn’t it ‘always going to be there?’ They want you to deal with it. Suck it up, buttercup. And hide it. Smile. Be a good, functioning employee. A functioning member of society. Don’t complain about it.

The sense of isolation creeps up on you. Always striving to maintain and never quite succeeding. Always trying to cope with the pain. Think though it. Presenting a facade that is acceptable in public. It is exhausting. You wish people comprehended in the least little bit how difficult it was to get up, to move, to pretend to function to present that facade and get through a day. Just one day. To live a day at a time because that is all you can get through. Just day by day, hour by hour, minute by minute. If they only knew the sacrifices. The careers you had to give up. The ambition you can’t have. Because the pain simply will not permit it. Your very life lived in limitations, moderation and pacing. As best you can, because working saps so much pain tolerance and energy from you.

But in the land of pain… life is different. The rules are different. Life is different. In the real world, people do not see it.
Chronic pain sufferers kept silent and under-treated under new pain regulations.

And they want our silence. As the medical community obsessing about addiction such that they do not even seem to care about the quality of life of chronic pain patients… they don’t care to hear from those chronic pain patients. They are suddenly ‘difficult’ and ‘drug seekers’ and notes are put in their file. For speaking. For saying “I am suffering more than usual and I can’t handle it. It is exceeding my capacity to cope with.” Clearly… that should be ignored. Clearly it would be So Much Easier if we would just suffer silently. Under-medicated. With no quality of life. The pain exceeding our capacity to cope with it.

I have a pretty good medical team myself and opiates are not a viable option with chronic migraines. I have a slow release tramadol that isn’t causing rebounds, but any other would. It doesn’t work for chronic migraines, but mildly for FM. I have little that can be done for my migraines. So I suffer. When it comes to the regulations I speak more so for those in the States and in BC Canada who seriously are in need of opiate treatment and have been taken off completely due to this or dropped as patients because their doctor doesn’t want to ‘deal with a pain patient’ or had their dosage severely reduced. And they have no rights. No voice. They are not addicts. These laws were not designed for them. They are just being punished for them.

Nevertheless isn’t that what society wants? For us to not complain? Do they realize what no quality of life means? It tend to mean no work for one thing. No being productive. No capacity to do anything. To means an existence of survival mode. Just getting through the pain and nothing else. Dooming someone to that is cruel. It is ironic. There are far more chronic pain patients than there are addicts. Addicts will get their drug of choice whether these regulations exist or not and everyone knows it. So all the ones that will suffer are those that suffer quite enough already.

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Everybody’s An Expert on Migraine

Chronic Pain Cockney - The Little Things

As ever with the Chronic Life series, this post is made up of my opinions based on my experiences of living with Chronic Migraine and now, it turns out, Chiari. Some days I feel positive, so days I rant & some days I fall silent altogether. This post may be a little on the ranty side but I’d love to hear your views in the comments (where I approve comments individually to ensure that trolls get no joy from me or anyone commenting). 💜 K x

Migraine is a strange thing. Unlike rarer disorders, it is a disease that a lot of people have heard of. It has been my experience though that while lots of people THINK they know exactly what Migraine is, many actually do not.

The public in general may not be aware that Migraine impacts sufferers in a variety of ways and the frequency of attacks…

View original post 740 more words

The internal battle of coping #Blogboost

We have a lot of lifestyle things we do in our treatment plan. Things we adjust and do on our side aside from medications. But it can be a lot of effort to keep it all up, especially if you really see no immediate benefit from anything.

The angel on my shoulder said exercise, avoid triggers, eat right, meditate, do your physio, do yoga and take your vitamins.

Lately I have been feeling angry, frustrated and somewhat drops of depression with the pain in relation to my migraines. Because there is nothing they can do. Because the pain isn’t managed. And I get into these moods, likely Not helped by my depression I’d say, that says it literally doesn’t matter what I do the migraines never change. So why bother even doing these things. What Is Even The Point. And so I slack off on the exercise. The medication. My vitamins. And I isolate myself a little more than usual because I just want to deal with the pain in the comfort of my own home for a bit.

I have never seen any response from anything I have ever tried. So that devil on my shoulder has ammunition. Literally nothing I have done or not done has changed my migraines from daily to less than daily. But this devil… he really just has no hope. He says be hopeless. Slide into a depression. Give up. Don’t think about it at all anymore. Nothing matters.

Then my other side kicks in and says I have to try. Maybe none of the things I do, do a damn thing. Maybe combined they do. Maybe over time with medications they will. Maybe, maybe, maybe. All I know is they do no harm. They give me something to focus on. And hope for I suppose. I think in the sense they give me something to strive for.

However, as you might imagine I never have much of a routine fluctuating between the two of these. Depression has a way of messing with my routines anyway as it saps all motivation to do a damn thing. Generally when I am in high pain at that.

Kudos to those that do dramatic diet changes and massive exercise programs. Because seriously I have to convince myself that doing these things in theory is even worthwhile. I have to then pretend I have hope. I have to work myself into some motivation.

I will say I seem to have developed a mindful meditation routine at night. No matter what it seems to be easy to get into. And relaxing before bed. At least I can say I have that down.

It would be more Consistent if I did all the things in my treatment plan… even if I felt like crap, depressed and felt it was all pointless anyway. That seems to be the goal. Then I would lose no momentum.

What interferes with your treatment plan?

Mine is clearly a) Depression b) pain levels c) frustration with lack of progress ever.

 

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How do we even do this? #Blogboost

EmilyD

There is something special about chronic migraines. In its unbearable suffering. I admit I have not exactly been responsive to treatment. Recently at the pain clinic my doctor put me on 200mg of slow release tramadol for pain. And nada. I actually wondered if it was a strong pain killer but someone else at the same pain clinic… for sever TMJ was getting a 1/4 the dosage and was doing great on it. Either I respond poorly to it, or it just doesn’t do it for migraine pain. It actually moderately helps with fibromyalgia related pain, which I rather like. Not a lot, just sort of takes the edge off the sharper pain. But it is like it ignores the migraine pain altogether. However, there is no other pain killer he would put me on due to rebound effects. He did consider a NSAID but due to my rather unfortunate response to previous NSAIDs and now side effects that wasn’t an option. He is completely right to do so. My doc once put me on codeine for a rescue med and I rebounded like crazy on that. More than twice a week and the headache From it was nuts. There is no winning with rescue medications. The only reason they tried the tramadol at all with me is because I have been completely non-responsive to medication. I do however respond to triptans, just have bad side effects so cannot take them very often at all.

So there actually is no option. Aside from trying botox for a second go around, when it failed the first time. Nevertheless, I am going to try it, because rather nothing else to do. And when you have nothing else to do, you repeat and hope for the best.

The pain is mind-boggling. So difficult to even attempt to function through. To even want to contemplate functioning through. But doctors all encourage work. Only part-time, but work. And it is just so freaking exhausting to try to manage the pain.

If I didn’t have a medication to manage the depression associated with all this pain, I would in fact be suicidal from it, as experience has told me. As it is, my mood still dips quite a bit. Because, well, it isn’t exactly fun and games is it? But it is constant. A constant battle of pain every damn day. This is because the pain levels are quite high. For example FM pain varies from a baseline pain of around a 4-5 with more intense pain in specific areas of around a 6… flare ups get to 7 or 8. Migraine pain ranges from a 7-9 all the time. So all the time I am in 7-9 pain. Best case 7. Good day.

And a 9 is extremely high intensity pain. Yet I am told to work through it. To push myself because the pain will be there regardless and I need to work. That is effing high pain. I have troubles driving with that level. Troubles just moving. Thinking is very narrow and tightly focused… and not all there. It is like the pain gives you blinders. It crowds your brain so you have to narrow your focus to the specific task in front of you. Inch by inch, get though the day. Plod though things slowly and methodically. Praying for no errors. And just counting down the minutes until you can get home to suffer in peace. Time becomes infinitely slow. Drawn out. Endless.

And I wonder how the hell am I even managing this? Not well really. Not well enough at work, still, even part-time. The pain specialist said the pain and medications make things difficult cognitively. Not to mention migraine pain specifically does. How the hell do we manage all this pain? Affecting our capacity to think to function to move to sense our environment with accuracy… Because we must, obviously. But I don’t know why we don’t just up and quit one day. Enough! That is it! I’m not moving from my dark house until I have to… screw you society! You can’t make me suffer more! Course they can. And they do. And we continue on.

Where does all that damn strength and courage even come from? Some days I cannot get out of bed because of the pain and the creeping depression that tells me I just don’t want to move in all that pain. Those days are days the pain wins. How I manage to get out of bed on other days… I have no idea.

We must be badass mothertuckers. I don’t feel like I am, but to do what I do in pain I must be. All I ever feel? Is the guilt of not doing when in pain. And I am sick of the bad pain days. Because there are too many of them. If I could just decrease the intensity of these migraines I would be so relieved. As it is, I feel like I am running in a dream… where my legs don’t work and are stuck in thick air and I get nowhere at all. Nowhere fast. Can’t escape.

I wonder if I am the only one that wonders… how will I get through tomorrow with this pain? And how long can I endure this pain? Years? decades? So maybe I am a badass Mothetucker but I am a tired one. Far too tired of this pain game. Worn to the bone. How I have survived this long is something that surprises me. I don’t know how I did it. Moment by moment of course. Still decades of pain wears a person down. Yet we carry on. Tired. Badass with our freaking shear determination and guts. I will win this day! And we do.

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CGRP #BlogBoost

A friend of mine once said I would feel better if I stopped taking all my medications.

 

Sounds like 2017 will be a good year for migraines. We have the anti-CGRP treatments coming out. Something to look forward to when we have never really had much to look forward to.

Actually, there are more than four companies, developing both monoclonal antibodies that target CGRP or its receptor, as well as other small molecular drugs that target CGRP or other receptors that are widely considered to be important in turning of the pain and other symptoms associated with migraine. These results will become available at the same time that the American Migraine Foundation is launching their national public migraine awareness campaign.   It’s the first time that has ever happened. Dr. Dodick 

The medications target a compound called calcitonin gene-related peptide or CGRP. Researchers have known for some time that CGRP (which is a message carrying chemical) was involved with migraine attacks. But now they are targeting the neurotransmitter itself.

Over half of patients are seeing a 50% reduction in migraine frequency while using the CGRP drugs — some even more.  Dr. Peter Goadsby, director of the UCSF Headache Center in San Francisco, called it “a truly landmark development” that will offer many patients “freedom from the daily grind of being a migraine sufferer.”MigraineAgain

 

It is unique because it is the only preventative designed for migraines to date if it comes out. Every other one is off-label for migraines. This one was specifically targeted to migraines. So far indications are they will reduce frequency and intensity with very little side effects. With Half the patients seeing a 50% reduction. It will be a once a month medication as well which will be a nice perk.

And also how about This For both of the studies that have been fully reported, there are a small proportion of people who, at 3 months, it’s about 15% [whose migraine has disappeared], at 6 months, it’s a little over 10%, where their attacks stopped and didn’t come back.

Here are the two trials:

David Dodick, MD, studied with LY2951742; a humanized monoclonal antibody that binds CGRP. In a phase II he had 218 people with from 4 – 14 episodic migraine headache days per month, and randomly assigned them to get the antibody or a placebo. The medication was given every 2 weeks by injection.

Resulting with a reduction on average of 4.2 migraine days for those on the active drug compared to 3.0 days for those on placebo. 67 CGRP subjects and 47 placebo reported 50% drop in frequency. Mild side effects and self-limiting.

Peter Goadsby, MD r studied with ALD403; a humanized peptide antibody to CGRP.  This one was given intravenously at the start of the trial in an hour long infusion and not repeated.

There were 163 subjects with 82 on the medication and the remainder on the placebo. Average decline in migraines was 5.6 for the medication compared to 4.6 for placebo.

The proportion of patients with 50%, 75%, and 100% reduction in migraine days at week 12 was significantly greater in the ALD403 arm, Goadsby said. MedPage

I am very eager to try out such a promising medication. It is said to be, of course, rather expensive as well, so we will see how that works out. It is hard to say how it will perform, real world. From my experience with Botox, it wasn’t quite as significant as early studies suggested, but nevertheless a boon to those with chronic migraines. This seems to promising, I just don’t want to, well, jinx it.

 

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Chronic, episodic migraines and chronic pain

the pain constantly haunts my existence

There is on profound difference between episodic migraines and chronic migraines and that is chronic migraines are Chronic Pain.

I once had an employer who had episodic migraines and because of this she believed that she could relate to me with my chronic migraines. I hoped this was true myself because it was so very difficult to get people to understand this was Not a headache. She got that part. Indeed she understood that completely. But because of that she couldn’t comprehend how I could function in the pain, and therefore how could I in fact be in pain. How could I function one day and not another? Why couldn’t they find treatment that would work? Why didn’t I do enough to treat myself? Why was it so complicated in my case?

Fact is episodic migraineurs do not need to know all the ins and outs of migraine research and treatment if they get them rarely. She had no idea 4% of migrainuers get chronic migraines. She thought I was some weird anomaly. She thought I had to be doing something wrong and that treatment was simple. When treatment for chronic migraines is a rather complex thing. She ended up not exactly empathetic to my cause, but I hardly blame her. I had untreated daily migraines and was missing a lot of work. No one likes an undependable employee.

The point isn’t about episodic migraineurs and what they do or do not understand about chronic migraineurs…because we are all migraineurs. And we all understand the fundamental migraine experience.

The point is chronic migraines are Chronic Pain and that is a whole new set of rules to play the game under. No more take a triptan and sleep the migraine off. No, it is trying to live your life With migraines. Because they take up more than half your days… or all of them for people like me. We can’t treat them all with abortives, which means we have untreated migraines sometimes. Like any other chronic pain condition we have to learn to endure the pain. We often have to learn to even function through levels of it. If we are lucky enough we can dampen it a little, which is a good thing. If we are very lucky a penetrative helps with frequency and intensity.

Nevertheless we are not hiding in the dark… we walk among you with our hats and sunglasses and migraine balms and medication filled bags. Trying to live our lives. And people inevitably say, “I don’t know how you do it.” And there is on simple response to that. “We have no bloody choice.” This is our life. We must find a way to deal with the suffering, live in the pain gaps and, every so gently, live our lives.

I could say to you the pain constantly haunts my existence. And it does. I could say there were times I simply could not bear it. And that is true. But it is my life to live and I cannot waste it being afraid of the pain.

With chronic migraines it is your constant companion. It affects every aspect of your life. There will be impact. And impact. And compromises. And more compromises. The pain has a radius… it will affect your loved ones, your family, spouse, children and friends. Yet it is an invisible disability. People will call it a ‘headache’. They won’t believe you should miss work for it. They will believe you are just trying to get out of work. They will believe it isn’t nearly as painful as it is. They certainly won’t believe you can be Disabled from Migraines. Nor that you can function with them, even if you have to, they will believe you must be lying that you have them. Because like I said, how can you function one day and not another? The stigma is profound with migraines.

With episodic migraines though if you get them rarely enough you’ll get sympathy. People will say go home and rest. You must be in pain… look at you. And you will take that triptan and sleep it off and be fine. It won’t interfere with your life, work, loved ones, ambitions, goals, existence and social life. And you would Never imagine functioning with it. If your boss told you to keep working without migraine treatment with a full-blown migraine? You would complain to Someone about that business.

It isn’t that the pain is better… the pain is the same. It is that it is about chronic pain. And chronic pain is a different game.

And the risk is… anyone with episodic migraines could go chronic. Or high episodic, which has the exact same impact as chronic. There are certain risk factors like obesity, starting out with higher frequency, allodynia… and others. But the tipping point can just happen. One day you are managing well with a condition you Think is simple and one day you are trying to function through daily pain.

 

society.

Work not working #blogboost

Have too much ambition_ On the fast track and don't know how to get off_Try migraines.

Working with chronic migraines has always been a battle for me. One that I have never really actually seemed to succeed at. Certainly one I have tried to succeed at. Certainly one doctors have tried to get me to succeed at. But not one I actually have.

This has always, always infuriated me because I have ambition. I have this sense of wanted to progress in a career. I have this desire to want to accomplish things. I also want to hold my own financially. I am a very intelligent person and I want to engage myself. Not to mention, apparently, some of my self worth is tied up in what I do. I rather established that fact when I went on a long term leave and felt sort of at a loss. That can be normal and it is difficult to find ways to fill that void. Nevertheless in my case my doctors assured me it was in my best interests, all around, to return to work part time. They said it was impossible to work full time, to wish was firmly established by me, but that it would benefit me to work part time. And of course there are a great deal of benefits to working. I enjoy getting out of the house and being in the world as it were. I like the forced routine of it that makes me get up at a certain time, and go to bed at a certain time. Otherwise my sleep cycle due to excessive insomnia is extremely erratic. To a point, and I must make that clear, to a Point, it is actually a very good pain distraction. Not to mention the all mighty financial stability, which I value immensely.

And yet, even part time.

I fail to Get to work: This is an issue. My pain levels vary like everyone’s. And there are days of extreme pain where nothing works. Or days of extreme symptoms. On these days I have missed partial days… so loaded up with medications and then made it in for a partial day, or missed a whole day. I mean, some of those days with vertigo and persistent migraine auras it wasn’t safe to drive. Some of those days I did anyway. But some I just could not. Some days because of the depression and pain, I had no willpower to do so.

I wonder if I just have to push through the pain again. But when I did That I ended up with deep, horrible bouts of depression. Due to forcing myself to exceed my pain limits. Yet this is in fact the only viable solution to this problem I have. And this is freaking part-time. I should not be having such an issue. The idea was: One day on, one day off. Makes it easier to tolerate the idea of working in pain. But the pain disagrees.

Functionality: So I get to work. Bravo for me. Well I my performance isn’t where it should be. Because when I get there I have a migraine. I have a migraine every damn day. I am just trying to not make mistakes to be honest. And damn to you get in trouble for those. So I just try to focus, focus, focus. But there is more to it than that. And I am just trying to get through the damn say. So, yeah, my sales suck balls. This job is easier than my last roll. It was meant to be. To ease my stress and so forth. And it does. But thinking through pain when that brain of yours is pretty much using 90% to tolerate the pain and only 10% to function… it is damn difficult. Thinking through mud.

I’m actually not sure what to do about this. Some days with a migraine my brain capacity seems so very low. My verbal capacity definitely suffers substantially. Sometimes I am very confused. Sometimes I am so very dizzy. It does take a lot of effort to sustain actually focusing on just general tasks. I don’t think people realize how difficult it is to function during one of these. Neurologically speaking. Not just pain wise. It reminds me of my spouse and his beloved truck that has a broken spark plug… truck is running really rough. Well I have have five broken spark plugs all the time. I barely chug along neurologically. Yes, this is difficult because I remember what my brain was like. And I have not had clarity in over a decade. God, I miss migraine free days so much. I miss the processing speed. The clarity of thought. The mental recall. Being able to use my words.

 

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Poem: Going Status

The poem is about going into a status migraine. Which is an acute migraine that last longer than three days… can last weeks. Pain level is very intense. I wrote it because I am in it.

Status migrainelocked me in paincrowded me out of my brain

Going Status

Status migraine
locked me in pain,
crowded me out of my brain,
frantically trying to stay sane.

Yet, yet it remains,
Impossible to sustain,
I must take the pain and constrain,
This, status migraine, my relentless bane

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Migraine face

I see people post for migraine awareness images of themselves with migraines. So here is mine. Day for status migraine. I’m getting pretty tired at this point. The pain is difficult to tolerate. I personally think it is hard to see expression wise usually, maybe but now it is easier… four days of an acute migraine wears a girl down. More so it is my personality that changes. Speaking less. Functioning less. Having troubles with words.

 

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