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 level and therefore the lack of communication skills, prone to errors, aphasia and confusion that will occur. Pain takes up part of my brain to Tolerate it, I get the rest to function with... the more pain, the less I get to function with. We don't obsessing about it, but we have to adapt to the level of it on a constant level. if I am sitting down and my pain is high with my legs crossed I need to a) cross them the other way b) change positions some other way or c) get up and walk around for a bit. That is in our mind all the time. Need to shift position. Need to stand. Need to take a medication now. Need to just not move now. Need to lay down now.
I am literally always fatigued- Not tired. Fatigued. Like tired times 100 wrapped all over your body and into your very being. Like moving is a momentous effort. Everything seems to waste so much energy that I don't have. People have a rechargeable battery. They eat and their low battery gets a boost. And off they go doing things. I have a battery in the morning. Sometimes I start off and it is half empty. Sometimes I start and it is at a 1/4. And I have to figure out how I can get all the things I need to do with just that amount because their is no boost. When I am empty I am Empty. I lightly dust the house or clean some counters, or do laundry or clean the bathroom and I am wiped out. When someone asks me to go out or come to a gathering I want to say YES, but I have to think what level of pain will there be and how my battery will I have left when we are there. I can only say maybe, and decide on the moment. Even then it sometimes get so much worse once I am there. We are not lazy, dealing with pain every day is exhausting on the body. 
Painsomia-I can't sleep. I have insomnia from FM. More so though I have painsomnia. My pain is always high at night. I just lay there, me and the pain, in the dark with nothing to distract me from it... and I can't sleep. The pain is too loud. Too There. I'll lay there for what seems like eternity and when I look it was just half and hour. I have to get up and do a walkabout and then try again, hoping to get comfortable. And the immense pain covers me again. I think the exhaustion gets you in the end. People tell we should get some sleep. It will help us. We want to. We really do. But pain and sleep do not go along.
Financial instability- This may not be true for everyone, but it seems statistically with chronic pain it affects our bottom line. What we pull in for income. Because eventually we have to make work compromises, especially if our work doesn't permit work place accommodation. We have to compromise because we can't do the work but then our finances suffer. Then we go on disability and our income drops substantially. I found for me it just continually goes down and down.
I am never content-I find I am never content with what I can do. I always want more. I want to work full time, even though I can't. I want a career that I enjoy, but I can't. I want to do so much more than my body allows that I feel like I am living a half life. But the pain isn't something I can win. Pushing myself never works and leads to horrific results. So I have to deal with the life I have, but I am never content with it.

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 name for a bit but got tired of it. I also read an abundant of fantasy fiction. Great pain distraction.

7) I've been blogging for about a decade now.

8) I have 3 cats at home. Charlie, Bobby, and Franky.

9) I am deeply into Marvel movies and Scifi movies. And TV shows like Daredevil and Supernatural and Jessica Jones.

10) I have a common-law spouse I have been with for 18 years. 

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, aggravated by circumstances that enhance it so you can't even just Be in pain, you must suffer the intense rawness of it and focus, and work and function. Horrific torment.
This is an important issue for me clearly... given I did attempt suicide and given it is a hard topic for people to understand or talk about. However, I think it is vital because clearly while I was struggling to survive and desperate with pain others are as well. And the suicide risk with chronic migraines is quite high. it is a topic that should be discussed.

Migraine, Chronic Back Pain Tied to Higher Suicide Risk

"Although undoubtedly psychiatric factors are important, there might be aspects of the pain that in and of themselves increase a person's risk," Ilgen said. "There might be something about someone with significant pain that puts them at increased risk."

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 health reasons. For all sorts of reasons. But we fixate on it when our health Forces us to make these difficult choices. Because it is a lack of a choice it seems.

I will say things like I 'gave up' my academic career. And I 'gave up' my career progress to work part-time. And I feel that part-time work isn't going to 'get me' anywhere. It is about the loss. Not about the gain. I gained a lot. Less daily stress from working part time. More ability to cope with the pain when working, or at least the possibility of coping with the pain whereas full time there wasn't even the possibility. Can't say I seem to be great at part-time either but the potential is at least there. And if I can't then i will have to accept the fact I cannot work at all, which will be another compromise people make for their health. Which is generally a massive adjustment because people often feel guilty about not working, judged by society and not productive enough. We distinctly feel the loss of work. And very little gain... as in we are able to cope better with our illness.

I will say I often see the closed door. The loss. I see the financial instability. The lack of a career. The lack of contribution. The lack of job satisfaction. I feel very much like a kid doing a summer job. And doing it poorly, which is very much not my work ethic, but the pain interferes with every damn thing. It is hard to see the benefits. Unless I focus very hard.

That is why psychologists recommend gratitude journals. To help us focus on the benefits, the gains and the things we are grateful for. Like for example... I am grateful I don't have to work tomorrow after working today. That I have this day off after a day of work to recover. That my employer permitted this flexibility that they do not normally permit in part-time workers.

Past thinking is obviously harmful to us. We do it all the time. But I hate to do it because my health and pain have gotten substantially worse, not better. So looking to the past I was capable of More. And looking at the Less I can do now makes me feel horrible. It is much more important to look at the present and for new potential opportunities. For example, new things to do that actually make you happy. Maybe your job will never make you happy and give you any satisfaction because you can no longer have that actual career anymore... just a job for a little work. So what? If you are capable of that, then do it and understand it gets you out of the house, socializing and is healthy in the sense it is good for a person mentally. And then... find things to do that genuinely make you happy. Like I should do more writing jobs because that is genuinely what makes me happy.

We get forced to by our circumstances to slow the pace of our lives down. And this is good. I think living a more mellow life is the way to go. Less overall stress. More easy-going. Less need to say yes to every single event and social obligation. But also we can do things for self-care like hobbies, time to ourselves, walks and socializing... as part of talking care of ourselves. We should look for opportunities to do those self-care things because they are as important as medication. So... maybe new doors to happiness will open. Not new stressful jobs that we cannot handle. But new potential for ways to fill that time with self-care. We need it.

So we compromise on the hard stuff. Don't focus on the past. Add new things in for self-care which improves our mental and emotional well-being. With no guilt because we are taking care of our health in all aspects that we can.

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 aromatherapy. For someone like me who is new to this process they made it very easy for me to figure it out for which I am grateful. We are talking no mess, no heat, no water and no noise. It uses pressurized air and so here is the diagram of how it works if you are curious. It is actually an interesting process. In the end you are using the pure essential oil, not diluted. I rather worried about heat... not having it monitored or being on long so this was a tremendous relief. And I left mine on for some time and it wasn't hot at all. Definitely no mess. You just add the drops to the top, put the cap on and that is that. And it is so silent that I don't think it actually makes a noise. And, yes, no water added at all.

The model called Radiance I have is quite aesthetically pleasing to me and has a light inside that constantly shifts in colors (LED mood lighting). It has a dark wood base and hand-blown pyrex glass.  I took a picture which is there above. And a volume to toggle how much you are diffusing. It has low energy consumption. One feature I quite enjoyed (2 minutes on, 1 minute off) was the auto shut off feature... That switches it off at 120 minutes. Ideally it says for a space around 800 square feet. I was using it in both my computer room and my living room/dining room and it was perfect for those areas. It is easy to port around so I took it wherever I happened to be. I suppose I could have just turned it up too. So it actually uses pure essential oil which I gather other difusers do not, and this makes it very simple for me to operate. And That I like a lot.

What I loved about it:

  • Totally aesthetically pleasing to me: The dark wood based combined with the hand-blown glass is perfect. Add in the mood lighting and this is wonderful to have around my house. The light is rather soothing in the dark. It just so happens I am a dark wood sort of gal. Any sort of wood on the darker spectrum is aesthetically pleasing to me. I was pleased with the look. I checked out their other models and this is my favorite. But they do have light wood ones as well and different decorate pieces.
  • I like the fact you are using pure essential oils with no water. And I like how the system of pressurized air to produce the flow of essential oils isn't giving an overpowering scent. It is just right. You can adjust the amount but I found it perfect at the lowest setting in my living room to be honest.
  • It is very quiet. I simply don't hear it running which is very important to me. Because my idea is to use this combined with meditation. Also with migraines I loathe background noise with a hatred beyond belief. I cannot stand when something that is supposed to be relaxing and when you plug it in it makes insane background noise. I mean seriously. So quiet is an important feature for me.
  • That auto shut off feature which I actually did happen to use as I forgot it was on one night. I am insanely forgetful. Brainfog plus fibrofog = living in a fog. With no heat I wouldn't worry overly in leaving it on, just that if I did it likely would break eventually. Like that time I left the oven on for days and it literally did break. Point is, this is an important feature for the likes of me.

The diffuser comes with an essential oil that is Organic Aromas Signature Blend. It has Elemi, Clary Sage, Cajeput, Bergamot, Chamomile. Oddly enough more than a few of these were listed in my research for migraines, so that is awesome. It is a soothing scent to be honest. It says it has a calming and sedative effect. Frankly I like that idea. And great that they add that in there. I was able to test it out right away. Then when I felt more confident I used some of the essential oils I had from making bath salts earlier this year.

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. Any job with regular moderate lifting... nope. Any job with shift work, also a no go due to migraines actually which due to the fibromyalgia insomnia causing the sleep deprivation trigger to really kick in. So clearly we do not Conform because right off the get go we have job limitations. We have to be very, very selective of what job we choose. And I aimed for a desk job. Of course sitting in one position for any duration is also painful, so i learned pretty quick you have to shift position regularly and get up and walk about often.

Nevertheless I adapted. Figured out how to work around the fibrofog as best that I could. Tried to figure out ways to cope with the rather problematic IBS-D in the workplace, which isn't exactly a fun experience. Pushed through the pain. And never referred to myself as disabled. I had a chronic condition that I was coping with as best as I could and no one was accommodating me for it.

Then came the migraines which developed into chronic migraines. Not to mention asthma and hypothyroidism. But mostly a vast increase in Pain. And I couldn't cope. And I had a hell of a time maintaining work. It was still implied I Should be capable. But I was put on short term leave after short term leave, as if that would somehow make some sort of difference. I began to realize I cannot compete. I cannot maintain. I am disabled by pain. Just the way it is. Whether the medical community accepted it or not. Whether my workplace accepted that or not. They actually said, at that time, they didn't accommodate for people with my issues because it wasn't a 'physical' disability. In other words they considered only visible or acceptable disabilities to be valid. I wasn't deaf or blind or in a wheelchair. They are better now, or the branch I am in is better. But the stigma can be found everywhere. You are just not disabled enough to be disabled... not the right sort of disabled. And if they decide you Are disabled then they layer all the more stigma upon you. So there is simply no winning.

I didn't want the label because I didn't want the stigma. Turns out society didn't consider chronic pain to be disabling enough to earn the title of a disability. So I was indeed expected to conform to societies standards. And I could not. In every way possible I failed. And I was quite aware of my failure. And it made me very depressed. We want to succeed. We want to find a niche and be respected and to have motivation... we wanted to belong. To be productive, with our health issues.

Not to fail. And hate ourselves for it. To know we cannot do better but it is demanded of us. To feel so guilty. And try pushing through the pain to try harder, having no life because we exceed our pain limits in the process.... and still failing.

This is why accommodation is so bloody important. We can succeed. We can be productive. Accept we have a disability. Accept it needs work modification. Do it. And enable that employee to be a productive member of the team.

Anyway, i excepted the term when I understood I was disabled by the pain. I was limited by it. I was not able to perform the same tasks as as the average person. I wasn't able to maintain work of any sort full time.

The medical community resists putting disabled people on disability. And I understand their reasoning but partly I think it is the same stigma I faced when they wouldn't accept how disabled I really was. The pain clinic was the one that accepted my real level of functioning, or non-functioning. They want us to play the game at a different level because to them the game still has value. But to me the game is a form of torture. The depression, the pain, the fatigue, the cognitive issues... all make it hell. We are still expected to fit into that work role. As I get an IBS-D flare and run the the bathroom 20 times. Or with severe nausea vomit in the bathroom all day. Then I have migraine confusion and keep forgetting how to do a transaction or what I was doing in the middle of doing it. I am playing a different game altogether. It is called chronically ill personal tries to function and get job done without effing the hell up again.

Nevertheless being disabled by pain people cannot grasp it. How can I be disabled by fibromyalgia and migraines... if it wasn't by something I did? I must be doing something, not doing something that caused it. If I only did... more I would help cure myself. They basically are the ones implying it was my fault it happened. And my fault it is still this way. They don't believe I am in pain all the time. Only when I am in extensive pain and show pain behaviors ... that they believe to be when I am in pain.

Anyway, we are disabled. If you feel you are at that point. Then own it. There is stigma for everything in life. We need people to stand up and own their disability.  I didn't own it because of the stigma and because for some time I coped well with FM. But I took on that label when it applied to me and I accept it. I can't do certain things and I have to do certain things differently. I am not like the average person. I am cool with that. I cannot compare myself to the average person because it would make me feel guilty as hell. I compare myself to myself of yesterday... if I improve on myself that is a good day, my friends.

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 lack of sleep because that does fluctuate from bad to horrific.

Nevertheless, we simply can't avoid it. And it is Painful. I was walking around like Frankenstein's monster. And slow, so slow.

Medications can only do so much I suppose. Mine don't do that much. They take the edge off regular FM pain that is true, but not the hyped up Flare pain. I can't rest when I have to work. Can't avoid stress... when I have to work. So... I am waiting it out. And moving slow. Tomorrow I am off and I will have a day of rest. And it will be a mellow day of relaxation and a lot of menthol creams I suspect.

It never ceases to amaze me how FM can flare up so spontaneously from like a 4-5 level pain to a 7-8 level pain. Fast, little cause, just BAM. Overdoing it being the most prevalent cause we experience. We just cross that limit a little too far... just a smidgen. And maybe we don't even realize it right away. Or maybe we do a little bit. With muscle fatigue and aches. Then suddenly the pain just smacks into us out of nowhere. It is sometimes hard to Know where that Line is. So it is pretty easy to cross. Especially on good pain days. Not to mention we are literally told all the freaking time to not let our pain stop us from doing things. So of course if we do things we are going to accidentally cross those invisible lines. Hell I cross them just doing the exercise I am supposed to do. Because exercise is painful all the time, so it is hard to know when I have pushed that pain limit too far. And then when I do it is extremely painful and I can't exercise for days after.

So to recap... pace, moderate... but don't stop doing activities... but don't exceed your limits and overdo it or you will cause a flare up. So simple, right?

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 failure then. It isn't just that we are exceeding our pain limits and cannot work, it is that we failed as a human in society. Sounds dramatic, but we think it don't we?
We are weak- like weak in character. As in it is a flaw we have. Not strong enough to handle things other people handle. Fragile. Emotionally weak, if we happen to have a mental illness.
We are lazy- Not that we are fatigued. Or having a flare. Or need to pace ourselves. No, we are actually just lazy. And it can happen that We can feel that we are inherently lazy. Even thought we know we are fatigued. Or we might suffer from motivation issues due to depression as well.
We are naturally stressed out people- I have heard this referenced for migraines and FM. And sometimes I have heard it said back to me by people with those conditions. That we just have 'high stress' and that it 'affects us more' and we 'can't handle it well'. And maybe that is why we got sick in the first place? Er. First of all positive stress is very healthy and how we even get things done. And I think we are stressed bodily after we get chronic pain, and generally handle it better than most would given the situation we deal with.
We are worthless to society- we are not productive, we just suck off the system. We are a drain on the system. We don't actually Do anything so we have no worth. And we can sometimes feel this and internalize it and feel horrible. Because we are what we do is so important to people. That people forget People are important and intrinsic worth is important. Who you Are as a person is important.

I could likely name more. You might have even encountered more. I know I have encountered more, but I have never internalized them. Like I am faking. Like I am not in as much pain as I say that I am, because I am complaining, exaggerating or because a am a woman and therefore just expressing it in a more exaggerated fashion. The 'it is all in your head' stigma... where they deny what you have exists and are implying you are crazy... because being mentally ill to them is also stigmatized. So to them 'all in your head' is equally as bad an option. The whole you don't have a disability because it isn't 'physical' and by that the person meant visible. Lots of stigma out there.

So what do we do? We have sucked in this abhorrent stigma and made it our own.
When we feel bad about our pain or about our illness analyze where that feeling is coming from. Why are we feeling bad? Do we feel worthless? Why would we feel worthless? Is it because we can't work? Then we know we have taken on the stigma of we are worthless to society because we are not productive by certain people's standards. Question where your negative feelings about your illness or pain are coming from. We all have these sorts of negative beliefs and ideas about illness that sneak in there.

I remember when I was diagnosed with fibromyalgia there was  a massive stigma about Having it. People debated whether it really existed. Called people just lazy and wanting to get on disability. And said it was just 'all in their head'. It made me feel ashamed and embarrassed to admit I had it. So for a very long time I never mentioned it to people I met. I refused to talk about it even when we were friends for some time. I refused to mention it to employers. As a result part of me still thinks other people think this way. Part of me feels worthless when I am not productive enough because I fear being seen as lazy.

Another example is depression. I refused to mention to anyone I was depressed even though I knew that I was. Including my doctor, due to medical stigma. Often with medical stigma if you mention you have depression they immediately minimize the chronic pain you have... believing all of a sudden that is all in your head. That it is All depression. I had actually heard of it happening. And when i was younger and mentioned depression to a doctor he completely ignored my pain which then delayed further my diagnosis. Even though the depression was due to the pain. Often we feel weak and ashamed with depression as well, again as though this is a character flaw and this is from internalizing the pervasive stigma around mental illness.

The fact is the stigma around us that we have heard, read and encountered does have an internal influence on us, unfortunately. It is sometimes hard to notice but it is there.

Why you should keep on going and not quit striving

Add subtitle text(1)
I have in my life coped exceptionally well and in those times of excellent motivation and hope I do things like:
  • routinely meditate
  • do regular physio exercises
  • do my regular exercises
  • maintain my work, mostly, as much as I physically can
  • socialize in my limited capacity
  • take 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.

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 the Journal 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 harm of antidepressants is not reported,” says Joanna Moncrieff, a psychiatrist and researcher at University College London who was not involved in the study. “They are not reported in the published literature, we know that—and it appears that they are not properly reported in clinical study reports that go to the regulators and form the basis of decisions about licensing.”
The article also mentions the side effect of hostility and aggression seen in teens.  It doesn't get into the rising concerns over withdrawal symptoms of many of these medications... which is a serious factor. Cymbalta being on that is often mention for its horrific and disturbing withdrawal symptoms immediately after going of it and then reoccurring months later. It is so alarming in fact doctors are carefully considering putting patients on the medications in the first place.

My concern however is suicidal ideation and it is with Cymbalta as well. I have always had an issue with antidepressants and their rather depressant effect on mood. I have mentioned it to doctors numerous times how they mess with my moods. But they are off-label for many, many things. Migraines. Fibromyalgia. So I have been put on them for quite some times, regardless of what I say. 

Cymbalta however, was horrific. I had been having a hard time with chronic pain as it was and therefore with depression. My doctor thought Cymbalta would help with FM, migraines and mood. All in one deal. Instead the suicidal ideation increased massively in intensity. Like a broken record in my brain. On repeat. Daily. They say suicidal ideation is common in people with chronic pain but Intent isn't as common, well, above average but not that common. But I had intent. I was planning and thinking and fantasizing. Actively thinking about it regularly. Until my actual attempt. 

I was taken off the medication after my attempt and I didn't suffer the withdrawal symptoms many people suffer through... perhaps because I was so relived at the not adamant about my own demise aspect. It was a seriously messed up medication.

Not the first time I have had an adverse reaction to antidepressants on the mood front, but the most severe. When I talked to the pain clinics psychiatrist about my medications he basically said due to my reactions I could not be on antidepressants at all. For any reason. He put me on Abilify instead, which dramatically helps my depression related to pain. Rather astonishing the difference between taking that which improves my mood and antidepressants which just twist it up and make it significantly worse. 

What is dangerous about it is that I wasn't really aware it was the medication. I was tangled up in all the suicidal thoughts and depression of it. And convinced myself it was all 'normal' because of all the pain I was in. Not to mention I was hiding the depression because I didn't like the weakness of it all. (See 6 reasons I masked my depression for years). You don't tie it into the fact everything got significantly worse with the medication. You don't think all that mental stuff is due to a medication and not the depression, the migraines and the pain. The suicidal thoughts were very consuming after all. It literally was inevitable I was going to have a suicide attempt on that medication. It was a given. With my pain and depression, I may have gone down that road anyway eventually. It occurred to me many a time. Sort of hopeful thoughts of dying by stroke or heart attack, where it would not be my fault but I wouldn't have to suffer any more. Death fantasies I call them. And definitely more serious suicidal ideation but no serious intent in there. On Cymbalta I even dreamed about killing myself. I also often thought about driving home from work on lunch and killing myself just so I would have to work the rest of the day in pain. Just constant thoughts of death. And how. And when. And visualizing it. It is like the medication plants thoughts into your mind that you must think about. Plants seeds that bloom into vines that twist into your brain. 

The worst thing about it all. Is I tried to kill myself. And even if the medication was a factor I had to live with that act. The effects. The trauma of it. Not only that but the stats for someone who tries to kill themselves trying again are fairly high.... and I was in that category because I had a second attempt not too long ago. A really spontaneous one that didn't have much thought at all on a high pain night. Apparently a typical thing for a second attempt. It is easy to cross that line when you already have... between thought and action. The medication may have shoved me over it the first time but who knows about the future. My psychiatrist I saw blames a medication for the second attempt as well. He says I am very sensitive to medications with a side effect of suicide and depression. This was a quite smoking medication. I have no way of knowing if this is true, since it wasn't like Cymbalta as far as I can tell. I believe it was simply the pain and not wanting to exist with it. Pain brings on bouts of deep depression and suicidal ideation. And I spontaneously decided enough of this living business. Thus why I was put on the Abilify. Now when in high pain my mood drops, as it would in anyone, but doesn't plummet.

So I believe antidepressants are dangerous. Especially if they are not giving accurate accounts of suicides and worsening depression and suicidal ideation. I have heard horror stories about Cymbalta. It is often used for chronic pain, in people who have never been depressed, and they kill themselves or have an attempt. It is sudden, spontaneous leaving family shocked. I always thought from the accounts I had heard it seemed rather a problem. The numbers seemed rather high. Then we have the withdrawal factor causes a great deal of suffering in people when they try to get off the medication. 

Nevertheless they can be very beneficial as well. But they are used so much for off label. And at such young ages. Maybe they should review those recommendations. Carefully consider which medications would be beneficial to their patients. Definitely consider their mental health as is. How they have responded to that class in the past. Warn them, and their families, to be on the look out for depression or aggression. 

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 have that learned behavior of masking pain plus trying to function through it. Then we have the compounding issue of every time the pain is intolerable or we are non-functional we can be plagued with guilt for not being able to do all those things that the 'peoples' want us to do. Guilt can be a rather large compounding factor, even if it is just so wrong that we plague ourselves with guilt over an illness that is not something we can control. The final compounding factor is that people tell us we should actually be able to control it and we really are to blame.

Well what does any of that have to do with anything? It means for me that being 'productive' seems to have a lot of extra 'meaning' attached to it. It isn't how much pain am I in today, it is how much was I able to do, even though I was in pain. How much of the day did I 'lose' to pain. Such that even though I am told to do all these helpful techniques that might help manage my pain... it feels wasteful to me. So wasteful to meditate for a half-hour when I could be slowly doing some housecleaning which likely will trigger a migraine earlier, compound the one I have and definitely cause other pain... but productive. Then, oops, caused a massive migraine and there goes the rest of the day and I didn't fit in that meditation or relaxation I was supposed to do. Damn it. I feel in some way that using the small gap of the day I have without a migraine doing non-productive things is wasteful and I should feel guilty about that. Yet other people are permitted downtime and relaxation free of guilt. I won't even let myself do things that could improve my existence because I have conditioned myself to 'get things done' in pain and to feel bad about it when I don't, so I need to fill all that low pain time with as much as I am capable of. So while we are conditioned to feel guilty about what we cannot do, we are at the same time told we should be able to control our illness to an amazing degree, but without actually spending any time on it apparently... because we have to be as functional as everybody else.
That is a conflicting message people. So. 1) Do stuff 2) Stop it 3) Lie down. Concise simple rules to relax. How you relax is up to you. The stuff you do is up to you. And maybe you prefer to sit rather than lie down. But every day give yourself the downtime to do these simple steps for you and your health. If you are anything like me stop this silly notion that you must fill every moment of every day, that would be the functioning moments, with 'productive' and 'worthy' activities. Just stop and absorb the silence for a moment (or if you are also like me and have tinnitus, you might want to stop and just listen to some mellow music. No one likes the sound of high pitched ringing. Not relaxing.) I don't care if you give yourself 10 minutes or half an hour. But you deserve to give yourself a little peace each day. I know the studies on meditation are pretty awesome so it could be quite beneficial for us to give ourselves this time to engage in meditation, relaxation techniques of some sort or biofeedback.
Also screw guilt. I hate guilt. I hate the people that imply we should feel it. I hate that I think I should feel it. It is so fundamentally useless.

and one thing we can do for ourselves is 1) Do stuff 2) Stop it 3) Lie down.

Wordpress Blog

I have set up a Wordpress BrainlessBlogger page at https://brainlessblogger.net/. 
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 up for a breath; he flies into my heart deep within.
He starts to claw and devour; in the holes the blackness slithers, seeping inside;
He treats my heart like carrion; he feasts my insides betide.
Why must this raven come to torture me? Why can’t I fight him to go?
Why does the pain want to consume me? Why must heaven only know?
The night tolls long and arduous; molasses the second hand ticks;
My body is frozen with bewilderment; I cannot believe I am really this sick.
Raven, leave me, and let me alone, your ravage rips me til I am sore;
The devil just looks with a dead pan face and screams to me, “Nevermore!

By Sean Hovater

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 chronic pain lifestyle.

I see you left the house you must be 'improved' or 'better'. I can even see where this one comes from. We are often hermits and isolated. When we leave the cave it is an event indeed. It seems to imply that we are vastly improved. It can mean it is a good day. Or we feel there is a family obligation. Or that we are aware that socializing is in fact mentally and emotionally good for us... and we damn well need some interaction with some human beings. But we may feel pretty cruddy. We may have to leave the house for doctor appointments or errands and really, really not feel up to it in the least bit. May very well be the last thing we want to do. We may be starting a slow exercise of walking which gets us moving and outdoors, but by no means is this easy.

I began getting out and about more often simply because I was aware that it was better to get some socialization mentally. Better for my spouse too. But it said absolutely nothing about my pain levels. It implied so to my insurance company though, but then they are a special little case, are they not? Always looking for their little reasons. Nevertheless, chronic pain is there, and we can still choose to live a life... carefully and in small doses.

I see you are smiling you must be feeling better or not in pain. This one is very common. People expect pain behaviors. When I exhibit pain behaviors at work, which I do when the pain is a high 8 or 9... I just cannot seem to hide it completely at that point, then people will comment on it. Otherwise they forget I have chronic, daily migraines. As in, there, daily. And work is a struggle. Not that I expect sympathy, but it illustrates that a smile hides a vast amount of pain. As does a laugh. People simply cannot see past it. Not only that but they cannot Fathom it, they cannot Believe it. You can express your pain verbally or say you have chronic daily pain that is pretty significant, but if you are not expressing it in a way that is meaningful to them they don't quite believe it is as serious as you let on. This isn't the case for everyone of course. You can usually decipher the ones with the 'look of disbelief'.

I actually generally do not believe it matters if people doubt my pain in general. I simply do not need their validation. My pain exists with or without their belief. I have to cope with it with or without them. What is a factor is Who believes and doubts. In my case my loved ones and family to understand my pain, pain's variability and my limitations. This is very important. When loved ones and family do not this is extremely stressful and difficult to cope with. Co-workers and employers one would hope would understand on some limited basis, because to some extent disabilities affect the workplace as does workplace discrimination. So that can easily be a massive issue. It certainly was with me in the past. Currently it is just a complication. A lack of knowledge and comprehension that doesn't seem to be an issue. What is always important to me is my employer is understanding of my difficulties and I can never be sure of that until issues arise, but so far it seems to be quite sufficient. With friendships it can also be an issue that arises. We have all lost friendships due to illness I suspect.

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 effects that are scary as hell, like Cymbalta with its suicidal ideation and intent with me.

2) If it is not one thing it is another: because often we have more than one chronic illness it just seems if it isn't one acting up it is the other. When my migraines sort of were temperate for a few days my asthma went nuts. Then I had an ulcer to deal with. Then chest pains. Then the ulcer still wasn't healed right. Then who knows? You get bronchitis. Then a FM flare up. Then the migraines get all brutal. It is just never ending. One post I was saying what a flare up, the next what a killer migraine and the next about how my asthma just wasn't under control. I know what the issue was with the asthma Now... it wasn't the asthma, I have reactions to triptans which cause heart issues and make me short of breath, make it hard to breath... which I mistook as asthma because I was new to asthma,

3) Weird symptoms- We can have weird symptoms that no one can explain that come from nowhere and then just go away. No test explains them. And they made no sense. My back pain that mimicked spinal stenosis was like that. It started, it seemed from a yoga injury. It lasted for well over 6-9 months. It was difficult to walk more than fifteen minutes without the pain then exponentially increasing. Had an x-ray and 3 MRIs. Nothing was seen. It must have been FM, the tingling I felt is a symptom of FM the location had worried the doctor given the type of pain I was feeling. Mimicked other conditions, yes, but must have been FM. Or random weirdness no one will ever be able to explain because it slowly diminished on its own. I have had a few of these in my life and they add it to the growing file but no one knows what they mean.

4) Worst of all the Impact: Tons of posts about killer pain levels. Missing work again and again and how this was affecting my work atmosphere and my boss getting upset, threatening and making me feel horrible. Post about how I couldn't socialize and was becoming, or was in fact, a hermit. How it was just about surviving work so I could get home and suffer in peace. How tired I was. I know how depressed I was too but I rarely mentioned mood, just some general references to bad mood days... which were in fact severely depressive days.

It is pretty depressing really to read about like that.

What I have noticed about what has changed:

1) I have made an effort to have a social life.
2) I have made an effort to make lifestyle changes
3) I have lessened the impact by working part time
4) I have lessened stress at work
5) my perspective is more optimistic on the things I can do to lesson my suffering
6) my mood is significantly improved, due to lack of isolation and medication.

The rest sadly is the chronic illness lifestyle. I have maintained in some things though I'd say. Certainly my asthma is under control, since now I know it is triptans so I can't use those as often or yeah I have serious issues breathing and chest pains.

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...