#Fibromyalgia #Cognitive #Symptoms

We are all familiar with fibrofog when it comes to fibromyalgia but fibrofog is really just part of the symptoms associated with the cognitive dysfunction of FM.

Article published online July 21 in Arthritis Care and Research has recently looked more in-depth into the symptoms of cognitive dysfunction and where it affects FM. What they looked at was four components of Executive Function:

  • Shifting; the ability to shift our attention between tasks.
  • Inhibition; the ability to suppress routine responses.
  • Updating; replacing outdated information with current relevant information.
  • Access; the ability to access long-term memories which is needed for verbal fluency.
The study had 30 participants between the ages of 18 and 70 with a control group of 30 women matching in age group. All participants were involves in 90 minutes of testing that measured pain, anxiety, depression, executive function, memory and working memory. Self-evaluation of cognitive impairment was also measured using Functional Assessment of Cancer Therapy-Cognition Scale (FACT-Cog 2), which can be used with people that do not have cancer because it does not contain any specific references to cancer.

The patients with FM reported a mean pain intensity level of 6.68 (SD, 2.59) on a visual analog scale, suggestive of moderate pain. On the Hospital Anxiety and Depression Scale, patients with FM had a mean total score of 18.2 (SD, 5.8), indicating severe anxiety and depression, compared with a mean of 11.2 (SD, 5.7), or moderate anxiety and depression, among the control participants (P < .0001). Scores of 8 or more suggest clinically relevant levels of anxiety or depression.
On the Digit Scan-Backward test, a measure of updating and working memory, the patients with FM had a mean score of 3.8 (SD, 1.1) compared with a mean of 4.4 (SD, 0.9) for the control group (P = .031). Patients with FM also scored lower on the delayed recall portion of the Rey Auditory Verbal Learning Test, with a mean score of 9.9 (SD, 3.6) compared with a mean of 11.7 (SD, 2.4; P = .033), suggesting impairments in episodic memory.
Attentional shifting was measured using the A and B portions of the Trail Making Test (TMT). There was no significant difference between groups on scores for the TMT-A, in which participants connect numbers ascending from 1 to 25. However, on the TMT-B, which requires the test takers to alternate between numbers and letters, FM patients recorded a mean score of 97.3 (SD, 39.9) compared with a mean of 75.7 for the HC group (SD, 28.6; P = .020).
Working memory was measured with the 1-Back test, in which subjects look at colored blocks on a screen for a given period of time and must then press a keyboard to indicate what they have seen. Reaction time is measured in milliseconds, along with accuracy. There was no difference in accuracy between the groups, but the patients with FM had significantly longer reaction times (mean, 891.2 msec; SD, 185.0) compared with the HC group (mean, 722.4 msec; SD, 131.9; P < .0001).
Patients with FM also showed significantly poorer judgment on all measures of self-perception of cognitive dysfunction, including mental acuity (P = .002 compared with HC participants), deficits noticed by other people (P = .001), verbal and nonverbal memory, verbal fluency, functional interference, and effect on quality of life (P < .0001 for each). (Medscape)
Overall the more serve the patient's FM (measured by Fibromyalgia Impact Scale) the greater the self-perception of cognitive impairments (such as attention and concentration or fibrofog). The sample size though was a limitation of this study. "In addition, the authors did not control for pharmacological treatment when enrolling the participants, and they point out that certain medications can have a significant effect on cognitive function. However, they write, "this limitation does not invalidate the main result of the study, which concerns the degree of accordance between subjective and objective reports.""

"[O]ur data indicate that the long-term and working memory, shifting of attention and updating executive functions of FM patients are impaired compared to [HC]s," the authors conclude. "These impairments are reflected in subjective complaints independently of depressive symptoms." They recommend inclusion of a self-report questionnaire to assess cognitive impairment in the initial clinical evaluation of patients with fibromyalgia. (Medscape)
Arthritis Care Res. Published online July 21, 2014. Abstract 

Poem: Surface


There you see,
the smiling me
A facade I created,
A game I concocted,
Just for you.
All of you.

Beneath the surface,
behind that face,
Is a silent scream,
And shattered dreams.
Just for me.
All for me.

I wrote this up for the migraineur misfits Facebook page I help admin for after I had looked through some old blog posts. I set it to an image I took at the Athabasca falls in Jasper National Park... the image has that fantastic reflection of the rocks into the water there. Just like we have this mask we were and underneath that mask we can mask all this pain and suffering.

Now, functionally, it is important that we have a facade to be able to function in society. With chronic pain we know this. We develop this. We all learn and figure out a way that works for us. So there is this duality. What we Show and the Reality. And the fact of the matter is people and society in general do not want to see or know about the reality all the time. There is a reason we do not want to be seen as chronic complainers or hypochondriacs... because people Can be seen as such. So we have to parcel out what they know of us. In pieces, so they never really know the true reality, but they may get a fraction of it.

The time I was reflecting on was a particularly difficult time. I had come off a leave of absence and it had occurred to me it really did not matter what I did, I had no vote in the situation when it came to my working or not working. If I was to work, then that was the way it was. If I was to suffer, then I had to do it quietly. If I did it quietly, then people assumed I was 'doing better' if not in fact 'cured'. It was the most idiotic situation ever. You do what they want, because you literally have no choice in the matter. And to do otherwise causes horrific stress and worsening work conditions that just makes your life a living hell, so better to suffer more and quietly, only to have people then assume you are 'much better'. This is when the facade works against a person. When your pain is actually so high it is hard to even maintain that facade, but you do, because you must. People still can't see through it, because they don't want to. In this case, the facade only serves them, not you.

I am glad to be out of that situation for sure. Just reflecting back on it is painful for me to be honest.

30 Things About My Invisible Illness You May Not Know

Migraine awareness headache Carnival September topic: Invisible Illness Awareness Week 2014: Just One: Share your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraines, Fibromyalgia, Hypermobility Syndrome, Hypothyroidism, Asthma

2. I was diagnosed with it in the year: Chronic migraines 21, Fibromyalgia 20, Hypermobility Syndrome 16, Hypothyroidism 30 ish, Asthma 27ish. Hard to really remember all that to be honest.

3. But I had symptoms since: Chronic migraines 12, Fibromyalgia 12, Hypermobility Syndrome since birth, Hypothyroidism 30, Asthma 27

4. The biggest adjustment I’ve had to make is: Sacrifices to careers and work. More than once. Then adjusting to not working at all.

5. Most people assume: The most brutal stigma I have faced is when people assume I don't want to function, don't want to contribute, don't want to work or don't want to socialize when I desperately want all the things in life they value.

6. The hardest part about mornings are: The insane grogginess, zombified, sleep drunk feeling I have to shake off before I can even pretend to function.

7. My favorite medical TV show is: Sorry, don't have one.

8. A gadget I couldn’t live without is: Smartphone. That thing plans my life. Without it, pretty sure I would forget my name.

9. The hardest part about nights are: Profound painsomnia... that is the high pain level and insomnia mixed together making it impossible to sleep.

10. Each day I take __ pills & vitamins. (No comments, please) 7 pills and 5 vitamins.

11. Regarding alternative treatments I: Am currently going to physio. I do meditation and biofeedback. I exercise.

12. If I had to choose between an invisible illness or visible I would choose: Neither. Both have their stigma inherent in them.

13. Regarding working and career: I am currently on long term leave from work. It has affected my career choices since school. It has affected my capacity to maintain just a job.

14. People would be surprised to know: Many things I expect. One thing that always surprised people at work was that migraines were daily (That they could even be chronic surprised people) that they had symptoms that could occur outside of the actual migraine attack... like I have persistent migraine auras, so auras that occur often and not linked to a migraine, and I have vestibular migraines, where the vertigo occurs outside of the migraine attacks often with a motion trigger and sometimes lasting days and even months. These facts always surprised people because they never thought of migraines as the neurological condition they are. So a lot of the symptoms often came as a surprise.

15. The hardest thing to accept about my new reality has been: That so many possibilities in my life have been eliminated.

16. Something I never thought I could do with my illness that I did was: graduate with my Masters.

17. The commercials about my illness: Are amusing. Watch all the people dancing and smiling and Then listen to that Long list of side effects. Yeah, can't be that fun can it. Assuming they were ever that effective, which they are not.

18. Something I really miss doing since I was diagnosed is: I have been chronically ill since I was a kid so hard to answer this one. Although I can say since the pain has upped its game I have become quite a hermit. I miss socializing like I was capable of doing in moderation when I was younger.

19. It was really hard to have to give up: Working.

20. A new hobby I have taken up since my diagnosis is: I write a lot of fiction. I always have but now I self-publish some work. I have written some poetry. I blog. I contribute and admin on a migraine group and on my own Facebook Page.

21. If I could have one day of feeling normal again I would: Do something enjoyable. Like go out for dinner and to a movie, which I have not done in ages since it is a migraine trigger.

22. My illness has taught me: Moderation in all things. Patience. To enjoy the simple things. To not sweat the small stuff.

23. Want to know a secret? One thing people say that gets under my skin is: 'Everything happens for a reason.' I know they don't mean it to. But it implies to me that this Suffering is for a Reason. I do not believe in anything being predetermined. Things just happen. And we can choose how to react to what happens. But there is no grand calculated reason behind it.

24. But I love it when people: I love it when people accept me as I am, within the limitations of who I am. When I cannot do something, or am compromised by my pain, I love it when they accept that. When they accept that I may only be able to do a little one day.

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. No acute pain lasts. I know that. So I think that to myself to get through it. I know, also, that more pain will come but the point to me is to remember that those high peaks do not endure. Thankfully.

26. When someone is diagnosed I’d like to tell them: That we learn to cope. We learn to moderate. We learn tricks to get through the day better and deal with brain fog. We learn our limitations and where they are. Coping is a fluid process and there will always be times were it is difficult, but at the same time we continuously pick up coping skills to help us strategically live our lives.

27. Something that has surprised me about living with an illness is: Just how much we can endure. Just how much pain becomes this level of normal background noise. Functional pain and non-functional pain.

28. The nicest thing someone did for me when I wasn’t feeling well was: People have taken shifts for me at work. An old boss for me once had a former employee take a shift for me on Christmas Eve when he offered out of the blue... and that I will always remember given how horrific I was feeling, how impossible it was to find staff to replace me and the fact this man had no clue who I was and yet he offered to do this.

29. I’m involved with Invisible Illness Week because: Because it is important for me to raise awareness about invisible disabilities and their impact.

30. The fact that you read this list makes me feel: Glad that I was able to reach someone

Never heard of it

I find myself in a very peculiar position with my health care right now. I am going to a pain clinic and seeing people I have never been exposed to before. I would think that they have come across so many pain patients that nothing would surprise them.

Indeed they are familiar with chronic migraines. They are familiar with fibromyaglia.

They are not familiar at all with what started my pain journey as a child. That seems to be so shrouded in mystery to this day because doctors are not familiar with it. Physiotherapists are not familiar with it. And it is hypermobility syndrome. I then say to them I am very double-jointed. And they go 'oh!' and get all fascinated by all the things I can do. But it is far more than that really since hypermonility syndrome and its more rare genetic versions of EDS Ehlers–Danlos syndrome have to do with a defect in the structure, production, or processing of collagen. The reason I say similar because Hypermobility syndrome has the same exact symptoms as EDS hypermobility. And there are more than a few symptoms listed in there. But hard to get any treatment for this if no one is actually Aware of the condition, isn't it? It does require pain management. It does require doing certain kinds of exercise, and not other kinds.

Basically the only specialist that knows anything about this is a rheumatologist, which would be who originally diagnosed me. 

I speculate I should be printing up information on my own and bringing it in with me to my doctor at the very least. Because someone should know about my treatment. I speculate I should mention it because I have been diagnosed with eczema and asthma and I am not sure either is actually true. I have fragile skin that bruises and bleeds easily, which will when scratched anywhere have blood rush up to the surface... something that is in line with hypermobility syndrome but I have been told looks like an eczema rash. But does it? It doesn't act like it. And then the asthma. Yes, I have asthma like symptoms but have never had an actual asthma attack. And hypermobility syndrome can present with asthma like symptoms. I think it makes sense to know these things. Also know if I am even on medication I should not be on.

It did surprise me to say the least. I know that EDS is called a zebra disease... because it is a rare disease. I just thought that hypermobility syndrome was more common. I guess not. I guess when it becomes a 'problem' it is not that common at all. And it was a problem for me as a child. It was what caused my childhood pain. What likely was the cause of my childhood insomnia. And if you have chronic pain and insomnia as a child it increasing your chances of other chronic pain conditions and illnesses. Which it did. By the time I was twenty I had FM and migraines. By the times I was thirty I had asthma and hypothyroidism. All comorbid conditions.

Chronically Ill and Mourning

"It's just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I am physically able to do."

You never stop mourning the possibilities you will never have. It is a fact.

I have been chronically ill all my life, essentially, and one would think that would enable me to understand that I have limitations. Instead it just made me have this strong desire to find something I was passionate about I was capable of doing within my limitations. I knew for example, that I had a lot of problems with physical work, with repetitive motions, with standing long hours, with lifting... a lot of restrictions. I wanted to aim for a desk job. I went to university in order to find something I was passionate about. Academically I never had a problem. Finding subjects that interested me was never a problem. Excelling was never a problem, once I figured out how to compensate for the fibrofog issues that is.

I had this belief that I could attain my goals if I just pushed through the pain. If I just ignored it. Because by the time I went for my Masters I was in school and also working. I had fibromyalgia but I also had to contend with chronic migraines. I hit a new wall of pain. I discovered that, no, you cannot just push through some pain. That pain once you reach a limit affects thinking as well as you physically. Your passions and your dreams. So you make compromises. You discard that passion and that dream.

I decided I would work instead. Just a job. A desk job I could physically Do. And make that a career. Yet, I could not actually physically do it. I could not really function through all that pain. I could not have a perfect attendance if my life depended on it.

So I am not working, which at this time is a good thing. I am coping with that pain better. I am surviving. Yet I have this frustration in me. This eternal frustration that no matter what I want. What I desire. What I dream of. It is stalled by what I am physically able to do. I have been told I might be able to attain part time work. At best. That is my best case scenario. And I have to realize all those things I thought I might be, become, all those possibilities... are gone because of this pain. Pain just ends possibilities.

And this is not a poor me statement... but I wonder what would we all achieve without this pain? If it were just never there what would we have been? What mountains would we have moved? But it is not to be.

We must take what we can get. And to that end, we constantly mourn. Mourn what will never be. I can understand that these compromises are a good thing for me mentally and still mourn the lack of what could have been. So we have to deal with this lack. This void. And fill it with what we can.

#Migraine and #facial pain image

This is why when you have a migraine you jaw, your teeth, your eyes and your sinus area can all have pain.


I am doing a lot for my chronic pain lately. More than I ever have. And that is a good thing but I cannot say that it is making a difference. And there is this fellow that works on contract from the insurance company who phones me all the time who I get the impression is waiting for me to improve. Well, so am I, man, so am I. However, nothing in this chronic pain world is guaranteed is it?

I have been told there are no more medications to try for my migraines and that is why they are pushing the exercise idea so hard. Might as well they said. Might as well try it. I know I am impressed by that.

Yet, I can say it is not getting worse. I know what the worst was. And it is better than that. When I was working that was the worst. And I have less status migraines because I get more sleep. And that has improved my mood. Both good things.

Sometimes though that is the good story. When we are not working. That is not the story this insurance fellow is looking for. Not really the story I am looking for really. It would take more improvement though to be able to work. At any level. According to the pain clinic the level I can expect if I do see improvements of some sort is not what I was doing. So I cannot expect to return to my previous job. I might be able to work part time. However, the issue is if I work part time, which I agree does make sense, then I must work at an income more than I am making on long term leave and I am not sure that is possible. I still think it sad that I would work as hard as I have been to, maybe, achieve part time work. That is sad. But I think we have to work with what we are given and accept our limitations. I get that.

Problem is while I have been able to exercise a little bit more I just have not seen a difference in migraine level yet. Not sure how long that is supposed to take. I have a hard time being optimisitic I suppose.

You know what optimism would be? A migraine free day would be optimism. Just one day and I would be optimistic at my chances to succeed in more of that. It would show I could break the pattern. Turn back the pain clock. Re-teach the brain.

#Hypomania as an aura in #migraine


"We report a 19-year-old man presenting to the department of Psychiatry for the evaluation of prominent behavioral symptoms associated with episodic headaches, with normal inter-episodic periods. A diagnosis of classic migraine with hypomanic aura was made. Other possible co-morbid or causative illnesses were excluded and preventive therapy with valproate was started due to the prominent affective symptoms as a part of the migranous aura. ...Recent research into the mechanisms of migraine has identified that the cortical hyperexcitability and an imbalance between neuronal inhibition and excitement mediated by gamma-aminobutyric acid and excitatory amino acids respectively may be the underlying mechanism. The high rate of affective disorders in patients with migraine, association of migraine with an aura comprising of mood symptoms and good response to treatment with mood-stabilisers might give newer insights into the pathophysiology of mood disorder as well." (PubMed)

 Hypomania and depression are both mood related aura symptoms that can occur with migraines. It is more common for me to get a depressed mood than hypomania but I have had the hypomania symptoms... I often refer to them as my manic migraines. In this case study the person had these symptoms "He would feel extremely happy. He would be hyperactive, demand money, express grandiosity. This stage would last for 15-20 minutes. Stage II- He would develop severe holo-cranial headache, throbbing in character associated with photophobia, phonophobia, photopsia and fortification figures. Visual symptoms lasted for 15-20 minutes. During this phase he would be extremely destructive, breaking up household articles, be abusive and assaultive towards family members. This phase would last approximately 4-5 hours. Stage III- Immediately after the headache he would sleep off for 1-2 hours. Stage IV- He would be extremely remorseful about his aggressive outburst. He would have full memory about the incidents and would be symptom-free till the next attack." (Neurology India)

Here are some general hypomania symptoms found on PsychCentral:

  • Inflated self-esteem or grandiosity
  • Decreased need for sleep (e.g., feels rested after only 3 hours of sleep)
  • More talkative than usual or pressure to keep talking
  • Flight of ideas or subjective experience that thoughts are racing
  • Distractibility (e.g., attention too easily drawn to unimportant or irrelevant external stimuli)
  • Increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation
  • Excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., the person engages in unrestrained buying sprees, sexual indiscretions, or foolish business investments)

And many of those are what I experience when I have this aura. Which is why it is so noticeable for me in particular since I am very reserved, think before I speak Not chatty person. Sleeping, well, that is not noticeable given my chronic insomnia and really I am usually beyond the aura phase by then. What I notice is this extreme chattiness and Need to fill the air and also apparently very little need to think before I speak. And I will just keep on going and going too. I have racing thoughts. A thousand thoughts a minute it seems. In that aspect I like this aura better than that sense of zombified mind. I can at least still think. I feel like I can think really well in fact. I feel like I am really productive. I get a lot done. I am really jittery though. Can't sit still. Lots of nervous energy.

And you know I can be very thankful to this aura back in the day. When I had to defend my Masters thesis I worried I would get a migraine, have aphasia, be unable to think clearly and just do a horrific job when this group of professors asked me questions. And I did get a migraine. And instead of that I got this hypomania. And even helped with my fear of public speaking even though I was insanely jittery. I was able to think so clearly that I flew through their questions and articulated my thesis clearly.

When it comes down to it with the hypomania symptom I can articulate clearly at least. Instead of aphasia. And that slowly of my thinking. But I have so many thoughts it is like a thousand escape for every one I can keep track of. And while I am very productive, it is like a fantastic illusion... very productive but in extreme pain. People do not see those migraines very well. They just see the excessive chattiness. And frankly, I loath the excessive chattiness since that is so damned out of character for me. And I never quite feel comfortable in my skin. I will say though that I prefer it to the depression aura state which is pretty sudden, deep and dangerous. But I really think that would depend on the person. For me it never has seemed to cause as many problems as the depression. Maybe I bought a few too many books online a few times... things like that, but nothing extreme. But the potential is definitely there for it to cause problems. So looking for preventatives that are specific for this sort of thing is a good idea if this is an issue. I know I had an issue with the depression related migraines. And really I don't like the migraines messing with my mood like that. Fine, then not fine, then fine, then not fine... it is erratic.

It is very rare in me to have this aura though. Enough for me to notice its peculiar nature for sure. Enough to make up a name for it in my list names I have for my migraines.

Long term opiate use and chronic pain #ChronicPain

It is popular these days to be of the opinion that it is dangerous to use opiates foe numerous reasons to treat chronic pain especially in the long term. Partially there is the risk of addiction although clearly not everyone gets addicted. Partially there is some basis that with certain conditions the treatment with opiates can increase pain sensitivity over time. And then with conditions like migraines, specifically, there is always the added issue that treatment with pain killers over and above three times a week could cause rebound headaches and if done too much migraine overuse headaches. So it is a complex set of issues and the stigma around it is pretty intense. I mean, I would be rather insulted if someone were to imply I would get addicted to painkillers automatically.

So this study Pain Patients can have Good Outcomes with Long-Term Opiate Treatments is pretty brave to imply anything against the stigma tide I think. Long-term opioid treatment "can produce positive outcomes in chronic noncancer pain when physicians prescribe it carefully to individuals who have low risks for addiction and overdose, according to the results of a systematic review." (Pain Medicine News)

Essentially the study was a meta-analysis of past studies focusing on quality of life (QOL)

The researchers " performed a meta-analysis of pre–post results on eight randomized controlled trials, eight open-label extension studies from randomized controlled trials and nine observational controlled studies. These 25 studies included 4,719 patients, 3,160 of whom (67%) completed the studies. The analysis focused on these latter patients.
The investigators found that long-term opioid use resulted in significantly improved function, and physical and mental QOL." (Pain Medicine News)

She said that, for publication, the paper will include an uncertainty analysis that takes into account the worst-case scenario of a high dropout rate and the resulting underestimates of complications and overestimates of opioid effectiveness. Dr. Furlan also conceded that the patients in the systematic review represented a minority of typical chronic pain patients, because they did not have risk factors and were monitored carefully.
“It is true that most of these conditions are not followed in real-life opioid prescribing. [In clinical practice] I see a lot of careless prescribing, which can be characterized as ‘high-risk patients’ and/or ‘high-risk prescriptions.’ When you mix both, it is dangerous,” Dr. Furlan said in an interview with Pain Medicine News. “But when physicians and their teams take the time to carefully screen patients, keep them on as low a dose as possible and monitor them very regularly, our results show that the outcomes can be very satisfactory.”(Pain Medicine News)
I think quality of life should be a factor in this equation and it is often something that doctors can miss especially when they are focused on the biases associated with the types of medications available to treat their patients pain. This is not to say there are not medication alternatives for a doctor to consider in every situation. But you have to be quite moronic to believe such things as NSAIDs carry no risks to a patient... in fact, they have quite the death and ER record themselves, but because it is not Addiction we are talking about apparently it is fine. I will tell you I was not too pleased when my doctor at the time ignored my side effects due to NSAIDs because she was reluctant to prescribe anything else, resulting in a bleeding ulcer and so far permanent NSAID drug sensitivity.  And there are more than a few people for various reasons who cannot take NSAIDs due to the risks they have. So a doctor must carefully consider all medications and all risks. And I think when it comes to pain management he or she should be monitoring all medications, side effects and effectiveness in order for that person to have effective treatment.

While I do not believe pain management is all about medication I do believe it has a role. And I am a little tired of the stigma applied to opiates when they also have a role with some patients and their long term chronic pain management. It does patients a real disservice if their doctors do not properly consider all possible treatments, whether for that patient it includes opiates or not. Obviously in some cases it will not. In some causes other medications are better suited. Because, as I said, it is about quality of life. Quality of life can be completely unable to function, a hermit, unable to work and not coping with the pain.... or it can be something better than that. We all want something better than that and I think we deserve that.

Thoughts on Suicide

The suicide of Robin Williams really hit me hard. I suspect because I grew up laughing with him. Perhaps because he hid his depression behind a smile and that makes me sad. Someone once asked me why I make so many jokes about my pain. And I said better than crying. We all learn to mask our suffering and some of us choose make people laugh, to smile, to laugh and then people think you can't be in pain right? Or perhaps losing anyone to suicide makes me sad, when no one should have to feel that way in the end. I always feel a pang in my heart every time we lose someone in the community to suicide which happens all too often. I think there are a world of people who knew him personally and will mourn him.

The stigma with suicide though still runs rampant though and while I have seen so many people understand this death and so many others were caused by depression... others feel they can judge those who die in this way. They say they are selfish. That they should have just got help before it got that serious. That they should not have let their families suffer for their pain. I have seen this on twitter and I have seen it on Facebook. I have seen it recently and I have seen it before and I will see it again.

And people think these things because they do not understand depression. And because they do not understand suicide. And they do not even understand the two do not necessarily have to go together.

This is one thing I want people to understand about suicide:

Physical, mental or emotional pain. In my case it was physical pain. 

In my case my suicide attempt was not this spontaneous occurrence.  With profound pain came suicidal ideation that I fought off every time. Bravo me. I survived more times than you can count. Was that then selfless of me or just survival instincts? We want to live. We love people. But there was a war within me and one I was losing.

My existence was torture and it seemed Unreasonable that I should have to exist this way. Irrational that I would choose to exist in that pain, and in fact choose to make it worse. Why would any sane person do that? And all avenues I had tried to reduce that pain had been used up. Society, my employer and my doctor at the time were all by their lack of caring and disinterest stating they wanted me to suffer. So this was my existence. Forever. And forever is a long time when you are in pain. A very long time. You see how endless and indefinite it is. If you just knew how long it was you had to go on. You begin to think how nice it would be to have a fatal stroke because... that would not be your fault. Then you imagine if you could kill yourself but make it look like an accident then no one would have to suffer with the knowledge that you had killed yourself. Clearly, I knew I was suicidal but these were Bad Days with Bad Thoughts. And my bad pain days were usually status migraine stretches, so I just had to wait them out... until I could get back to normal pain days. Normal hell. Then my work place would give me these ultimatums. If you do not work every day... we will do something unpleasant. And that would cause more pain, more stress, more suffering. Until that last ultimatum in that last status migraine...

Do not ever tell me someone is selfish when they are suicidal until you have been in that mental space. Until you have gone down that slippery slope of thinking and reached that line... and crossed it. You have no idea what goes on in that space. No clue. We do think of the consequences of our actions. It is just that first, we understand that grief will end and our suffering has no end unless we make it end. That is the first misconception our brain convinces us of. Well with physical pain we are very aware there literally is no end. But pain has a way of consuming your capacity to see reason as well, but that is another rant. (I will just say extreme pain warps reality as well) Second, that our families will be better off without us. We are a burden after all. We are holding them back. Imagine how much different and better their lives will be if we removed ourselves? Of course they would not Want that... but if we did it for them, it would in fact be better after they grieved for us. I myself was sure of this. I also knew my insurance company covered suicide so I knew financially some of my expenses would be covered... an added bonus really. Frankly, I assumed my existence was really rather worthless. Just this endless mass of pain that has no real meaning and worth. Except essentially to torment me... and That seemed like the ultimate madness really. You can rationalize suicide. You can slide down that slippery slope until you have essentially made it make Perfect Sense. I even explained it to a therapist after the fact and she could not even argue against me... as in she could not explain to me how my reasoning was not rational. She should have been able to because there should be flaws in the reasoning but we can really have quite an in-depth rational going on. 

And so, no point arguing is there? There are finding reasons to live I find. Finding ways to live. Finding what you need to change and figuring out how to do it. Living until living works for you. Seeing a psychologist is something I chose to do to help with pain management because pain management is what I was severely lacking in. And it was damned hard. I was traumatized by the suicide attempt. I think sometimes people think an attempt is just a cry for attention but in fact it is just... didn't get it right for whatever reason. In my case poor timing on my part. I know I could have had good timing and not be here right now because I had done the rest of it quite well. But I will say... it should be taken very seriously and the cause taken very seriously and the treatment taken very seriously. In my case it wasn't really. The pain wasn't treated. The work situation remained. And I became depressed from it. But after that... when I shook free from that I was motivated to change my doctor, see the psychologist, start managing my pain in new ways and took a long leave from work. I suspect I might not be here if I had not made those changes. Pain like that when not treated can really consume a person.

In the end when you survive a suicide attempt you are always at risk for another attempt. There is less of a chance of survival with a second attempt. We have to make that choice to understand the future does not mean endless suffering. The future can bring with it positive changes if we look for the right solutions and get the right sort of help that we need. It is not always easy to find and it is not always an easy solution... sometimes it is a damn hard fight, a constant endless battle to manage our suffering... but better than it would be with no help at all. With no hope at all.

We need to talk about this. We need to reduce the stigma of mental illness. And reduce the stigma of suicide. Check out: Stop calling suicide victims 'selfish'

Can you see? Poem

I don't think I will be sharing any poetry and images with my poetry on my Facebook page in the near future, so this was the last image I had made. It was just that recently someone had taken the words I had used and put them on their own image, which happens. But then I thought what if they did that with a poem I had created and claimed that as their own? The thought makes me feel icky inside. Took a lot of courage to share any of my poetry publicly to be honest. I have a low self-esteem when it comes to my writing and sort of generally do not share it. So the thought disturbed me, but it is the internet and no way to prevent that sort of thing. I think therefore if I create something I want to share I might just reserve it for my blog as I feel it is a bit safer here.

Can you see?

Can you see me?
All of me?
Screaming in there?
Hidden in there?
All of me?
Smiling for you?
Dancing for you?
Can you see me?
Struggling inside?
Dying inside?

Can you see me?
All of me?

 I worked up the image on this one as well. I needed a silhouette or shadow image and could not find a free to use one that worked out right. Easy enough to make one though. In this case, using my own profile.

The poem itself was is a piece I wrote specifically for the Migraine Misfits Facebook page. I got inspiration from the first few lines and it formed from there. It is meant to be a reflection of the pain of invisible disabilities. I don't think this is my best piece really but it does work for the purpose it was intended for sure.

placebo effect

A lot of people are disturbed by the placebo effect because they believe that it undermines what actual medications are doing. Just believe more and your medication will work! Well, medications do have an effect. They do have to perform better than a placebo. Let's not get carried away with the concept. However, what the placebo effect does show us is that beliefs do have an affect, positively and negatively, on the body. And that is an amazing thing. It is literally proof of mind over matter. If you want proof that meditation will do Something that there is it. However, I am not sure that there had ever been a sustained study on placebo effect. That is to say, I am not sure it would have a lasting effect. But the effect is there. Our beliefs and moods do have an effect on us physically. And that is a lesson I think is good to remember. And maybe it does make a difference psychologically speaking that they always make sleeping pills blue. I don't know. There always is a psychological factor to how we perceive things like that... that is why they do them that way.

Over the ten minute wall in exercise

Yes I have made it past this ten minute wall in my exercise. For a whole month on the stationary bike all I could do was ten minutes and the muscle fatigue prevented me for getting any farther. It was frustrating. At least the pain clinic then informed me it could take up to six months to attain an hours worth of aerobic exercise.

Well I have breached that wall. On the other side of it is pain unfortunately. At first I noticed I had more stamina and was getting farther distances within in the ten minutes, but still only getting that ten minutes. Then all of a sudden I could surpass the ten minute boundary by more than a bit. 12 minutes. 15 minutes. Today 21 minutes.

Seems awesome progress really on the stamina front. On the pain front not so much. I hurt like hell in the ankles and knees. I knew this 21 minutes today for example might have been a mistake because my knees hurt while I was doing it and now my entire legs ache substantially but quite a bit more in the knees and ankles. Those joints are getting to me.

You have to remember this is With a pain killer. Without a pain killer my progress would be severely hindered. With it I am still getting a pretty nasty increase in pain.

I have to remember that this is a slow increase. I seem to have out paced myself today and I am paying for it. Yet, nevertheless progress is being made. I am sure I am capable of doing 15 minutes without a problem. Or less of a problem.

However my left knee is making a grinding clicking noise that concerns me a little. I think maybe I should ask the physio people to do some knee work. I have a lot of knee issues due to the double-jointedness.

The sustained effort of the chronically ill

 Being chronically ill does not come with any perks. It is exhausting to live with these symptoms on a daily basis. To have chronic pain and fatigue on a daily basis.

If that were it, that would be enough. That would suck and people would not care much that it sucks for us, but it would suck nonetheless.

But that is not it. Since we have a chronic illness we have to chronically treat it.

  1. Medications- and their side effects. Often including side effects like weight gain and More fatigue. Or More brain fog.
  2. Supplements and vitamins. For every illness there is a long list of supplements and vitamins that might help with it. I say might for a reason. They could help, they might not. They might be full of filler and little else since the industry is not very controlled. It is hard to know which ones to take as well because taking them all would mean likely just not bothering eating. And the cost is not something to ignore.
  3. Alternative treatments. Take your pick on this one. Acupuncture. Chiropractor. Massage therapy. Physiotherapy. Biofeedback. Neurofeedback. We try many things. Some of them help a little. Cost again is always a factor. Unless it is meditation and relaxation therapy... those are free.
  4. Therapy and psychology. Pain and illness take a toll on us so therapy helps out with this because it can help us develop ways to cope. Cost is also a factor in this.
  5. Exercise. Always a fallback treatment. You have to constantly fight your fatigue and pain to maintain this one. Always an uphill battle and you never know if it is doing anything but at least it helps with fitness. The irony is you know no one else is doing these sorts of things. No other couch potato out there Has to exercise. No, they just get to judge you on what you do or don't do. We Have to exercise. Life is like that.
  6. Other life style changes. You can fit anything in here. Changing sleep patterns... a damn hard one. Changing diet... one that can go so many different ways. 

And then... sustain all this. Because this is what it is to be chronically ill. I know the impression that people generally have but what it is really like is a doing a lot for our illness and getting very little return for all our effort. That is what it is like. Not doing nothing and just having an imaginary illness. No, we work our asses off trying to get some sort of change. In some cases we do get a change and then we have to continue to maintain that level. Holding a balance is just as difficult.

So bravo! You should be damn proud of every damn thing you do for your health. We fight through pain and fatigue to do every damn thing we do in a  day. That is something. So everything we do is impressive. This is why we should do a daily gratitude journal... to note that we can and do accomplish things and we should be proud of those things.That we do make efforts for our health and ever bit counts.

So hold your head up. Straighten that back. And walk...

Neck pain, physio and #migraines

Neck pain is a fairly common symptom of migraines. However, when we have a migraine we also tense from the pain and this can cause pain in the neck and shoulders as well. So some of us can have a lot of neck pain and tension.

There was a time years ago where my neck got so screwed up I had referred pain into my shoulder so that every time I had a migraine my shoulder would hurt. It would hurt and I could not completely rotate it. I was sent to physiotherapy for a few months to get rid of that problem. It was due to the small muscles in that side of the neck being really tense all the time and the other side not as much. I was given a lot of exercises to do for the neck, shoulders and back. Most of which I have forgotten.

The pain clinic has sent me back to physio the difference is that the physio has asked me which areas I would like to work on and I have chosen one of those to be my neck. Reason being my neck always hurts. It can hurt a great deal as well and cause problems with sleeping. So i know I would benefit from doing those exercising that I no longer remember. Regularly. Although I know I will have to deal with the symptom of neck pain, decreasing the neck tension is a very good idea.

She gave me some very mild neck exercises to work all the different neck muscles. And I must say it rather hurts. They may be simple exercises but you feel that. Not only when you do them either. They can increase the migraine pain. They can cause shooting pain up into the base of the skull. All of which tells me they are something I Should be doing. Those muscles are very tense.

So I have been doing them consistently for a few days now. And using a menthol muscles cream on my neck afterwards to alleviate some of that pain that comes with it. But I must say it really aggravates the migraines.

The Pain Facade

One thing we learn when we have chronic pain fairly early on is the Facade. That we should to some degree mask our pain for many reasons. Some of these valid reasons. Some of these reasons based on exposure to stigma. Some of these reasons based on societal norms.

I have to admit that I am fascinated with the process because of the fact it is so layered. Both necessary and a product of culture and stigma.

In some sense a part of me loathes it. I loath the fact that we hide so much of our pain. Because we don't want to be seen to complain so much. Because others do not want to hear it and when they do they never seem to understand it. Because talking about it is never quite appropriate. Because it seems to be more appropriate that we suffer in silence, but also be Productive. That would be far more appropriate.

Yet I cannot deny that there is a layer of functionality to the facade. We hide our pain from those who love us and who we love because they do not like to see us suffer and because they do not know what to do about that suffering. They can to some extent see it better than anyone else we will encounter in our lives, but we try to hide they depth of our suffering nonetheless.

We also hide our pain, and talk about it less certainly, in work environments simply because it is not appropriate in that enviroment and also to some extent it helps us to use work as a distraction to not think about the pain we are in, not discuss it, and focus instead on what we are doing. I used to also make a lot of jokes as well to get past the pain. You want to function through it, and that means not discussing it or expressing it. Although for some reason this always seems to imply it is not in fact There, and that simply is not the case.

The irony of the facade is that we mask pain to be more productive with pain, or for the benefit of Others.... and Yet, masking the pain, makes Others doubt our pain More. I assume they must prefer us to be screaming and crying constantly. It better fits their concept of chronic pain, even though we all know they would tire of this within moments of it.

So it is a universal skill we all develop and generally we all develop it for the same reasons. Utilize it in the same situations. Encounter the same problems with it. Seems to be this universal secret we all possess. I find it profoundly astonishing for all the doctors claim to understand about chronic pain, and I admit they know very little, they seem to grasp very little about the facade and how it impacts our behavior and how we express our pain in various situations. We can be downright stoic, unless in what we consider to be the very upper ends of the pain scale. Doctors fail to consider this though. We don't have the right 'pain behaviors'. They logically know this of course, this is why their infamous pain scale exists after all but we know the look in their eye and that look of disinterest and that 'I think I will treat this one like a crack addict'.

But then there is that upper level pain. I can't say what the line is for you. Your line may be different for you than it is for me. But we all have it. Where the pain bleeds through the cracks. Where our smile becomes fixed and hard to hold, then fades altogether... just impossible to maintain. Your your eyes hold the pain and then become glazed over and zombified. Thoughts are hard to hold and you have a hard time understanding what others are saying to you. You can just lay there and just the pain swirling in your brain to keep you company. Some limited pain distractions may be possible in the passive sense, and then nothing is possible. You beg your mind for sleep. Beg it for unconsciousness. Your facade cracks when you cross the line and then as you pass further along no facade is possible. Anyone can tell you are in immense pain. The only thought you hold is pain. It is etched into your face.

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...