Sunday, August 31, 2014

#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  • Updating; replacing outdated information with current relevant information.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 

Saturday, August 30, 2014

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.

Friday, August 29, 2014

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.

Thursday, August 28, 2014

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.

Monday, August 25, 2014

#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.

Friday, August 22, 2014


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.

Tuesday, August 19, 2014

#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.