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Showing posts from August, 2016

5 Things I know about chronic pain

Thinking about the pain- Yeah, thinking about the pain. Planning around the pain. Feeling the pain. Wishing I wasn't in so much pain. Trying to think Through the pain. Just pain. Pain.  Here is the thing, there isn't a time when the pain isn't on my mind in some way or another. I am sitting there and talking to you with a smile and a laugh... thinking this position is really beginning to hurt my knees and, man, my migraines is beginning to work its way up there to that Ahhh zone. I am at work helping a customer and I am thinking... just one hour to lunch and then it is just half a day to home, not much more pain to function through. Man, I hope I don't make an error. Just think methodically through the pain, it'll be fine. Focus. There is no moment I am not aware of my body, where it hurts, how much I have to adjust for that, how much I am capable of, if anything. I am aware of my pain level. I am aware of how functional or non-functional I am due to that pain leve…

10 Things you may not know about this blogger

1) I do indeed have migraines every day. Although on some days there is a pain gap in the morning. Likely the prodrome of the migraine, but I'll take it. 

2) I do get a lot of chest pains that I ignore... because they are related to FM. They are called Costochondritis which is painful chest wall pain. It does in fact sometimes feel like a heart attack, but it isn't. It can get very painful though. I cannot take NSAIDs which is what is used to treat it.

3) I get a burning skin pain associated with FM as well called Allodynia (Here is an article I wrote about it if you need more info.)

4) I have had chronic pain as a kid from hypermobility syndrome. Being very double jointed causes strain on the joints and pain. But I didn't get more pain until I was in my teens and so around 16 is when the FM began to pick up.

5) I just quit smoking about 5 weeks ago. And still dream about having one.

6) I write fantasy fiction in my spare time and self publish it under Nikki M Albert. Had a pen…

Suicide and pain

It is the anniversary of the day I wanted to die. And tried. It was a spontaneous attempt. I am told second attempts are. My first attempt, also in the month of August, was more planned, more thought out and more gruesome in my intensity. The second attempt just occurred to me and I was like Yeah let's do it, like right now. So I am going to repost something I have written on the topic to show the pain itself is a suicide risk and unmanaged pain is dangerous.
Depression Part Two by Hyperboleandahalf This is a funny but very accurate description of what depression is like.I had a horrible sense of numbness after I tried to commit suicide because oddly enough after the suicide attempt I got depressed. I say that and people don't get it. What? Clearly you must have been depressed before. Isn't suicide all about depression? But suicide can be about pain and not depression. Or a form of depression linked to pain levels I suppose. When there is a great deal of chronic pain, aggr…

When one door gets locked... open the door to self-care practices.

Here is the thing about quotes that reference doors. I think, well, it is a door... just open the damn thing back up. But here is the thing about chronic illness we know that some doors get locked. We have to make compromises and we lock those doors ourselves. Like when I put aside my academic career. Or when I put an end to my other career to work part time. And you stare at that locked door for a very long time. Because you put an end to a path. Something you wanted, because it benefits your health to do so. It is a compromise though; it benefited your health but you sacrificed something for it like happiness, financial well-being, job satisfaction and progress in a career path. That sort of thing.

It can be hard to see the path forward. And in fact that health well-being leads to things like mental and emotional well-being. And happiness even. Or other opportunities provided for us to fill the void.

We fail, often, to acknowledge in life doors close all the time. Not just for heal…

Aromatherapy and Organic Aromas Diffuser

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 am new to aromatherapy and since I have migraines I have been very wary of it due to scent sensitivity and exactly that as a migraine trigger. But I have been equally curious about it as well since it seems like it could be very soothing and a great complementary treatment to try. I am all for adding different complementary treatments to my treatment plan. And scents as we know go directly to their own spot in the brain. They can ignite specific memories. It makes sense they can affect mood and be relaxing. But also I am very new to the process. So I had to dig around one of my go to sites to look for some helpful migraine essential oils to give me a start.

So I have the pleasure of trying out the Organic Aromas diffuser for my adventure into aromathera…

The stigma of it

I don't know how it is for other people but I resisted the term disabled for some time. Mostly because of the stigma. There is a boat-ton of stigma associated with fibromyalgia. That it is just depression, that we are just lazy, that it is all in our heads. It was predominate when I was younger and just diagnosed and still felt now. I hid that I had it. I rarely talked about it. And when I did reference my health I referred to it as a chronic pain condition, vaguely and left it at that. Certainly I didn't say i was disabled.

To be honest there is this implication we are expected to conform to societies norms. Or even pushed to by medical professionals. Like there is nothing all that wrong with us. That we should strive to do so. And I always tried to do exactly that.

What I discovered in university was that every since summer job I tried was horrible for FM. Pretty much any job where you were on your feet all day was a no go. Any job with repetitive movements would not work. …

Flare day

The Flare up (see here for my article on it) is one of the worst fibromyalgia experiences. I fell into it sometime last night and woke up with the most unpleasant pains. In the hips, shoulders and back, not to mention all over aches. I was very fatigued yesterday and perhaps that was some prediction of impending doom.

Here is the thing we can pace and moderate but we cannot avoid all flares. Sometimes they just occur. Sometimes they are just radically unpredictable. And we just do not know where the hell they came from. This one I have no clue what triggered it. It certainly was not something obvious like overdoing it. Things like poor sleep are a constant factor but that could certainly have done it. It wasn't the weather. And, well, I can blame stress. Because I can always blame stress. But specifically I do not know. There is nothing that stands out. I know, usually, when it is stress induced because it is a significant stessor. But I can say I don't always know when it is…

The story we tell about ourselves often isn't true

We all have a pain story. I ask how did this happen to you. And you tell me... your pain story. Generally it is facts and about diagnosis and sometimes misdiagnosis. Our pain stories can be complicated because sometimes diagnosis is complicated.

But what pain means to us is vastly more than that. We think about it often. How it affects us. What we compromised or gave up for it. How it affected our loved ones. Its role in our lives.
And in there often gets tangled up 'self stigma'. We pick up the stigma from Around us or that is Implied and we absorb it into our own story and then inflict it upon ourselves. We are basically internalizing social myths and prejudices.

We are a failure- We have given up on life. We have no natural resistance to what life throws at us and we are a failure at handling life in general. Gee thanks. Little harsh on that one. But the fact is, we often reflect this one back at ourselves especially when we cannot work... well we are a fail…

Why you should keep on going and not quit striving

I have in my life coped exceptionally well and in those times of excellent motivation and hope I do things like: routinely meditatedo regular physio exercisesdo my regular exercisesmaintain my work, mostly, as much as I physically cansocialize in my limited capacitytake my vitamins and supplements regularly.I write in my gratitude journal regularly I am doing all the things that I am supposed to be doing for my health. I am striving. In that striving I also try new things. Because I am striving to find things that work for me. My plan of action. But...

Fibromyalgia Problems #2

Follow up to my Fibromyalgia Problems

1- Since you had a good nights sleep...

2- People get together to do something active while you are on the sidelines watching...

3- Your medicine cabinet is starting to resemble the actual pharmacy shelf.

4- People keep telling you 'look so good' and to 'get better soon'

5- People want you to Do things on your recovery days!

6- You try not to make definite plans

7- You get frequent advice on how to help with your health.

8- You get tired of saying 'I'm fine'

9- But you completely fake being well regularly

10- You get sick of people not getting your pain.

The dangers of antidepressants

The Hidden Harm of Antidepressants is a article in Scientific American in Feb 2016 that interests me due to my own reaction to antidepressants. 

Last September a study published in theJournal of Clinical Epidemiology revealed that a third of meta-analyses of antidepressant studies were written by pharma employees and that these were 22 times less likely than other meta-studies to include negative statements about the drug.they uncovered suicide attempts that were passed off as “emotional liability” or “worsening depression” in the report itself. This information, however, was only available for 32 out of the 70 trials. “We found that a lot of the appendices were often only available upon request to the authorities, and the authorities had never requested them,” says Tarang Sharma, a PhD student at Cochrane and lead author of the study. “I’m actually kind of scared about how bad the actual situation would be if we had the complete data.”
“[This study] confirms that the full degree of har…

You know you have fibromyalgia when...

How to rest

1)Do stuff 2)Stop it. 3Lie down
I see a psychologist who specialists in pain management to help me with all that lack of pain management. It is all about relaxation techniques, meditation, biofeedback... blah, blah, blah. There is a fundamental flaw in all of this and that my failure to grasp the three steps outlined above. Fundamentally along the way with chronic pain we figure out to mask the pain and to push through the pain... all in the aim to function on some level. Often a crappy un-fun level, but what counts is that we do things. And doing things is what is important to people. Other people mostly. Other people who do not have a pain problem. You suck other people. Anyway, we get this mental line. We have Intolerable Pain and Tolerable Pain. Functional Pain and Non-Functional Pain. That just seems like a chronic pain fact of life. The chronic pain life-style. Obviously one that does not work well when the pain exceeds our coping but for the most part it just is the way it is. So we …

Wordpress Blog

I have set up a Wordpress BrainlessBlogger page at 
For now the posts will mimic each other for traffic reasons for now. I would like the traffic to shift over but for now I am fine with it being both. Eventually I will be self-hosting so I needed to set up my own domain, and that is the first step I have done over there. So if you would like to switch over now you can and update your book mark. If not I will remind you as time passes.

Chronic Pain manual

I managed to find the last surviving copy of the chronic pain manual. Here are two excerpts.  

Poem: In the Midnight Hour

A fellow fibromyalgia member sent me this poem. It rings so true to our experiences and it is a wonderful piece. So much so I asked him if I could share it with you.

In the midnight hour…
When the midnight hour has wane; when the witching hour is nigh; The inky well of blackness creeps through my sinews welt the eyes to cry. I hear upon my window a scratching; a pecking; a noise will not go away; I pray God will send his angels to stop it; I cry for the break of day. The noise I dread to discover, the noise my heart stops to hear. A raven has perched upon my window; his black eyes turns in to peer. With my body aching and twisting; my skin drenched, sticky with sweat; I go to the window to confront this creature; I have no idea of the threat. I wonder why this wretched bird comes to haunt me, in the thick and darkest night; Why does he bring such sorrow and pain? Why my mind terrors to fright? He brings things I dread; pain; things I fear; he brings past failures and all my sin; He does not let u…

Signs the pain is getting the best of you

You must be cured...

We all know that pain is variable. I am at a 7 and this is unpleasant. I am actually not able to do much of anything at this point and am trying to distract myself. Other times my pain is more tolerable and then... I do a thing. I, of course, don't do several things because I have to pace myself but I do a moderate activity, a few minor activities or I go socialize.

Most people wouldn't assume this means my pain poofed out of existence. In what world would this even be the case? It is absurd to think that. And yet... that is the discrimination we get sometimes.

Well you did that Thing yesterday why can't you today? I'm going to go out on a limb here and say yesterday my pain was less or I pushed myself. For example on a work day, I'll push myself because the next day, in theory is my recovery day. Mostly though high pain means I'm doing nothing but self-care and moderate pain means doing very little and low pain means I can pace myself. That there is called the…

What I have noticed from old posts

I have been looking at my early posts and weeding through a lot of them. This was when I used my blog as a sort of cathartic journal. So I have been slowly getting rid of posts during that time. However, looking back at those posts over that long a time frame has made me realize a few things.

1) Side effects- We actually endure a lot of side effects. I had posts about horrible side effects from Lyrica, so i went off it for a time then back on tapering up slowly. I had side effects from meds causing weight gain, swelling, leg pain, foot pain dizziness, disorientation. Some I had no idea where side effects until I went off the medication and then Poof whatever it was disappeared. We have severe reactions to things like I did to NSAIDs causing a bleeding ulcer, which then caused an adverse reaction permanently to all NSAIDs and aspirin. We have tons of moderate side effects we just Deal with with our medications. Tolerate them because we hope said medication does something. We have side…