Fine line: Alone time and isolation

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With a chronic illness having some alone time is fine. To recharge. Have a nap. For some much-needed self-care time. To engage in a hobby that is meaningful to you. This is fine because it is controlled and temporary. Not to mention introverts love alone time and need it to recharge. It is more being alone, than lonely. And there is nothing wrong with alone time. And some of us are fine with more of it than others. As the image says, being alone isn't always lonely.

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Too much time alone, when we self-isolate, for example, is not so good. It can become being lonely, and not being alone. It isn't good for anyone. Humans are social creatures it seems. It doesn't even take long to cause problems when they did isolation experiments. But we self-isolate because of stress, pain, depression, and anxiety. We feel too unwell to get out of the house and to socialize. It can make depression worse.
The University of Chicago researchers showed lonely and non-lonely subjects photographs of people in both pleasant settings and unpleasant settings. When viewing the pleasant pictures, non-lonely subjects showed much more activity in a section of the brain known as the ventral striatum than the lonely subjects. The ventral striatum plays an important role in learning. It's also part of the brain's reward center, and can be stimulated by rewards like food and love. The lonely subjects displayed far less activity in this region while viewing pleasant pictures, and they also had less brain activity when shown the unpleasant pictures. When non-lonely subjects viewed the unpleasant pictures, they demonstrated activity in the temporoparietal junction, an area of the brain associated with empathy; the non-lonely subjects had a lesser response [source: University of Chicago].How stuff works

A 2013 study published in the journal Psychological Science found social isolation increased people’s likelihood of death by 26 percent, even when people didn’t consider themselves lonely. Social isolation and living alone were found to be even more devastating to a person’s health than feeling lonely.Medical Daily
 
social isolation impairs immune function and boosts inflammation, which can lead to arthritis, type II diabetes, and heart disease. Loneliness is breaking our hearts, but as a culture we rarely talk about it.
Loneliness has doubled: 40 percent of adults in two recent surveys said they were lonely, up from 20 percent in the 1980s.Slate.com
So we are hermitting and what do we do about this?
It can be challenging to break this habit to say the least. We need at least one family member or friend as a participant. Or you go find them.
Some ideas are:
  1. On days you cannot get out and about you invite someone over to do something you like. Play cards, watch a Netflix movie, play video games or sit and chat over coffee or tea.
  2. On a day you can handle just a little suggest going to lunch or coffee with a friend.
  3. On a day when you can handle more go over to a friends house for a small gathering to do something you enjoy. Movie marathon? Game night?
  4. Pick something to do out in the world that you can conceivably handle if prepared.
  5. If you have hermitted for some time you may not have anyone to do anything with in this case: a) volunteer somewhere with flexible hours to be around people or get to know them. b) join a group like a book club, or if there isn't one, start one. There are usually clubs for various different things. Things you might want to try. It can be difficult in smaller areas. Where I live in a smaller city there is not as much, for example. So more likely, in rural areas for people to create a club and meet in the nearest town or small city. I remember I went to a writing club in a town and there were about 8 of us in it, but it was fantastic. c) try local places that may have game nights like at coffee shops... they play assortment of games you can get involved in in groups. Or start such a club.
As an introvert and someone with depression who self-isolates, I know this is a hard feat to manage. As an introvert, I am happy if I get out and about once or twice a month, though. I am rarely lonely. As someone with depression, I understand I do need to do it once or twice a month for the boost to my mood. There is no firm line on this though. You may need more socialization time or less. Extroverts obviously want more as this makes them feel energized, instead of rather tires. So it is important to an extrovert to find ways to connect to people even with health issues. Less likely they disconnected as much as an introvert.

Achieving goals is surprisingly painful

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I am serious with that picture... a moment of pain is infinite sometimes. Take exercise for example. I am achieving my exercise goal. Exercise for me is a painful endeavor. I assume because of the hypermobility syndrome and my extra flexible joints that refuse to stay where they ought to. I do physio for that but, nevertheless, exercise is painful. And slow to improve. Maybe it is the muscle fatigue and fibromyalgia as well. Hard to say.

What happens is I start off on my exercise bike and in about two seconds I am in pain and then it increases exponentially until I am in a butt-ton of pain. I slow down to a crawl and time slows as well and it feels like I am going by teeny inches. All the while wondering what hell is this?
At first, two minutes. Yes, I succeed at two minutes. For the first two weeks I did 2-3 minutes. This was before my New Years resolution or I would still be at that point, of course. Let's call that prep time, shall we?

Then one day 5 minutes! Holy smokes 5 minutes of infinite pain. But five whole minutes. Right at the New Year. I felt pretty impressed by this. The next day 3. But after that 5 again!

Then a mind-blowing 10 minutes. Wow. We are actually getting somewhere now. I think I broke a sweat. And here is where it gets interesting. Because after 7 minutes that infinitely painful excruciating pain? Numbs a wee bit. Down to not as bad of a pain. And that is how I get from 5 minutes up to ten minutes much faster than I did from 3 minutes to five minutes. It is like this threshold is crossed after a lot, a substantial amount of effort and pain. But that first 7 minutes? Never stops being insanely painful. I have to endure it every single time. It still took a bit to get to this point. But, I knew I could, because I have done it before.

Then slowly up to 15 minutes. Takes a bit because there is a lot of muscle fatigue going on here. I exercise in the basement and it is a sort of break time to even get up the stairs afterward.
Then ten minutes on Level 2 and five on Level 1. This was by accident but Damn I am amazed by this feat of awesomeness. And now that I can do it, I will continue to do it. It would build some resistance training in the muscle which I sadly need.

Anyway, my end goal is 30 minutes a day. And physio every second day. I was up to 20 minutes every second day before I returned to work and then, well, too much pain to handle that. Since I am not working I need to exercise simply to not decondition my muscles. As also part of my chronic pain management. So I am half-way to my end goal. Then from there establishing a routine. And hopefully improving on the goal.

What I hate about it, is that it is so damn painful every damn time. What I remember about the 20 minutes is that the start, as usual extremely painful, then it slumps for the middle, then it gets extremely painful again and that is where I know to stop. But I can't get rid of the pain in the beginning, though. I assume the physio is designed to stop that. Strengthen my knee joints, but it hasn't yet. It is just the physio I learned through the pain clinic and the place they sent me through my insurance. I am not sure they understand Hypermobility syndrome quite that well but I hope it will help if I keep doing that at the same time.

Also endorphins my ass. I don't get that feel good crap from exercise. I think it might be because of all the pain. I do get a sense of accomplishment. It does help with cognitive fatigue though.
On the plus side, music does help with performance. I get further with music than without. Mostly because it is a pain distraction.

Review: The Whole Health Life

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 have been given the opportunity to review the book The Whole Health Life. Shannon Harvey got sick. Not the flu sick. But ill. She was hard-working and pursuing a journalism career and then... bam. They thought she had lupus but over the years had a few labels tacked on. She did what she did best, she delved into current research into what could help her live a better quality of life.

My review of the book:
This is an interactive book. She provides resources on her site, quizzes, meditation tools, book recommendations... you name it. This a bang for your buck there. I am still digging through all that. The studies provide my logical mind with what I need to feel satisfied. I need actual research to, well, believe anything. I need some meat. Yet it is not bogged down with research by any means. It more like we are having a compelling conversation with the author about her experience. On a journey with her. I really recommend to for a read.
The book explores the mind-body connection and I am into that sort of thing. It is like what is mentioned in the book this capacity we have to switch our genes on and off or how our emotional framework is 50% genetic... it is this space for flexibility. Some space for us to adapt and change. Granted, many of us do not have what she does. I have chronic pain conditions. And pain is a brutal beast to fight upstream with. I like to see these sorts of things as potential quality of life improvements. My psychologist said in a pain 101 class to us we will always have pain, but there are things we can do to help us manage our pain and live a life. It comes to an aspect of control. I cannot control I have these conditions. I am on medications, which is my foundation, but they only minimally help. What more can I do that may help me? And like I say, if that helps, do that.
So you read this book with well thought out research and it will give you ideas. It will make you think. And wonder. What if I did make a habit of that? What if I did start doing that? There is no cure. But there is always the potential for improvement to wellbeing.

The fun stuff I got out of the book:
The chapter on stress was fascinating in itself. There is this idea that all stress is bad. Bad stress! You just ruined my day, stress. But there is actually good stress that we utilize to get things done all the time. The Belief that all stress is bad, though, can be bad for our health. Just changing how you perceive it can help a great deal. I always tell people; I am not so great with negative stress but positive stress I am all good with.

One thing we do for our stress is meditation, which is big one for my pain management personally. What is it doing? A man named Herbert Benson found it decreased metabolism, heart rate, breathing rate and slower brain waves. This response he coined the 'relaxation response' which can be triggered through a Variety of techniques and traditions. They found meditation can affect healing time for example. In recent research, it has been shown to turn genes on and off, which is frankly mind-blowing. After 8 weeks the amygdala, stress center of the brain, gets smaller. Just 20  minutes a day can help with pain sensitivity. Yay! On her website in extra resources section she has some guided meditations for download. And she also has recommended meditation apps to use.

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Boom and Bust

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I just had an interview and I forget to mention the one thing with fibromyalgia we all do even when we know we should be pacing. And, yes, today I am not at my cognitive best. Sort of migraine and fibrofogy. Anyway, we Boom and we Bust.

BOOM: I feel not too bad. I'm going to do the laundry, get some chores done, go shopping, run a marathon and solve world hunger.

BUST: That was too much and now I feel like death. I will have to now recover for three days.

BOOM: Those three days of recovery did me good. I feel pretty good today. I'm going to do a lot of other random things I shouldn't be doing all at once and see what happens.

BUST: I did not expect this pain to happen again.

PACING: I feel good today but I will pace my activities because I need to conserve my energy and I know I cannot push myself beyond my limits.

We know the Boom and Bust cycle because we do it. On our good days we feel like we need to be extra productive to compensate for our bad days. And then we bust into a crapton of pain. Which is much worse bad days than if we paced all the time. We just forget that this happens all the damn time. Not to mention we want to be productive on good pain days. Yet, it is actually better to remain consist and pace all the time to avoid significant pain flares. Not all flares, obviously, but Boom and Bust flares.

I am guilty of this. We are all guilty of this at some time or another. I think I forget to mention it because it is much easier for me to pace when not working. I am the pace master. When I am working it is easy to bust just by working alone. Work one day, all good. Step into work the next day, BUST. The day after, your body is double BUST. You have no recovery time. It is just a BUST-a-thon. Get out of bed...BUST. Dangnamit. There are ways to pace and work, but in my case, it is the exceeding pain limits that are a factor with the chronic migraines added in. I am, in fact, pacing fine in a work environment and even by reducing to part time I was controlling the boom and bust cycle. But migraines are not on a boom and bust cycle unfortunately and do not respond to pacing. Sadly. Management strategies on that side of the chronic pain side are different.

I am not going to say don't do this because it happens. Life happens. I am going to say pacing is vital to chronic pain management and to consider time management of your activities. Consider downtime after activities. Think of yourself like a quarter charged Smartphone; yeah you can use that app, but not for long, sure you can do a couple of things but not too many. Bad example. Point is, your daily battery life isn't the same as everyone else's. And if you overextend into tomorrow's battery life too many times then it can shock the hell out of you forcing you to do very little for days.

Get your groove on: Music is not just good for the spirit

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It is well known that music not only may improve quality of life (QoL) but also have different effects on heart rate (HR) and its variability (HRV). Music emphasis and rhythmic phrases are tracked consistently by physiological variables. Autonomic responses are synchronized with music, which might therefore convey emotions through autonomic arousal during crescendos or rhythmic phrases. A greater modulation of HR, HRV and modulations in cardiac autonomic nerve activity was revealed with a greater effect for music performance than music perception. Reactions to music are considered subjective, but studies suggested that cardiorespiratory variables are influenced under different circumstances. It has been shown that relaxing music decreases significantly the level of anxiety in a preoperative setting to a greater extent than orally administered midazolam (p < 0,001). Higher effectiveness and absence of apparent adverse effects make preoperative relaxing music a useful alternative to midazolam for premedication. In addition, there is sufficient practical evidence of stress reduction to suggest that a proposed regimen of listening to music while resting in bed after open heart surgery. Music intervention should be offered as an integral part of the multimodal regime administered to the patients that have undergone cardiovascular surgery. It is a supportive source that increases relaxation. Music is also effective in under conditions and music can be utilized as an effective intervention for patients with depressive symptoms, geriatrics and in pain, intensive care or palliative medicine. However, careful selected music that incorporates a patient's own preferences may offer an effective method to reduce anxiety and to improve quality of life. Pubmed link
Actually, you can check out this article 20 Surprising, Science-Backed Health Benefits of Music because every point is backed with a study and while I was looking myself I found a few I listed below. And all of that? Is fascinating but it isn't telling you something you don't actually know. It is something you know intrinsically, music makes you feel good.
It is not just that, though. We can incorporate it into our self-care in many ways.
  • During meditation- it helps you relax and having soothing background noise can help with meditation, because, in fact, it can induce brain waves of a meditative state.
  • To help with sleep- again that relaxing background noise is beneficial. To be honest, I prefer to have background noise when trying to sleep simply because I have tinnitus. And ringing in your ears and silence? Unpleasant to say the least when trying to sleep.
  • Help with exercise- It boosts exercise performance. Now, my exercise is pretty minimal right now as I work myself slowly up and it is also very painful. Without music, that pain is extremely distracting and I will get half the time done. So I double my time with music. Granted, we are talking a few minutes. But the effect was noticeable when I had been able to do a bit more as well. It is just a good distraction.
  • Mood boost- Music can help with depression, although studies indicate the type of music is important here, as I can imagine it would be. I often use music to boost my mood though.
  • Pain and stress reduction- A great component to music is the perks in stress reduction and the distraction for pain.

So we might as well use something we love to help us with our self-care. 

Also I should note it helps with creativity. I tend to blog or write with music. "A study was conducted to investigate the effect of noise on creativity. Three types of sound were observed: high, moderate, and low. Results indicate that moderate noise, about 70 decibels, has better effects regarding creative performance compared to low noise.​" Youthtune 
Actually, it helps with productivity overall. "And this dual tasking is not to be questioned. There is a study done to show that listening to music while working increases production by approx 7%.​" I loved an office where we had music playing.  Frankly, any boost to my focus and productivity is a bonus. 

Articles to check out:
  1. http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0003566
  2.  http://www.sciencedaily.com/releases/2012/05/120509123653.htm
  3.  http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/04/25/music-training-may-help-keep-aging-brain-healthy
  4.  http://news.discovery.com/human/psychology/music-dopamine-happiness-brain-110110.htm
  5.  http://circ.ahajournals.org/content/116/24/F139.full.pdf
  6.  http://www.ncbi.nlm.nih.gov/pubmed/18426457
  7. http://www.psychologytoday.com/blog/the-athletes-way/201301/cortisol-why-the-stress-hormone-is-public-enemy-no-1
  8. http://www.telegraph.co.uk/news/uknews/2569640/Music-can-boost-your-immune-system.html
  9.  http://news.health.com/2011/08/12/music-eases-cancer-patients-anxiety-study/
  10. https://youthtune.com/benefit-of-music/

Review: CBD Clinic

I am reviewing some samples I got from CBD Clinic. I received no money to do this review and the samples I received had no influence on my commentary. They are currently running a campaign to get a product to market. Please see that HERE.

Here is their company page.
"The CBD CLINIC product line was developed to provide an entirely new class of non-prescription topical medications that offer Revolutionary Relief™ to the billions of people living with pain. Our mission is to help people throughout the world be as pain-free as possible.
CBD CLINIC products are brought to you in partnership with Aidance Scientific, an FDA-registered manufacturer of topical, dermatological solutions. Aidance Scientific has developed, manufactured, and distributed all-natural, over-the-counter medications since 2004, serving customers in over 150 countries worldwide. Aidance products are available in CVS and Walgreens, other retailers across the United States, as well as Amazon."


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Here are the main features of what is in CBD Clinic products.
  1. They are all natural components in there such as organic beeswax, jojoba seed oil, cottonseed oil, and shea butter.And generally, if I don't know what it is and can't pronounce it I don't want it on my skin. With Fibromyalgia I can be quite sensitive to these things.
  2. Powerful Terpenes- These are producing an analgesic action in acute and neuropathic pain by 'decreasing neuronal excitability through peripheral mechanisms' One might recognize one common one: Menthol. Others they use Camphor, Eucalyptus (another common one I see in migraine balms), Tea tree, Clove, Peppermint (another one mentioned with migraines), rich-hemp extract.
  3. Endocannabinoid Modulators-CBD Charlotte Webs strain and this is providing the anti-inflammatory and pain relief properties. Not to be confused with TSH which is what gets you high. CBD doesn't. I have heard wonderful things about that strain by the way, so it seems like that right there was a good chose for the product.
Basically, I pointed out there what I like about it; the other ingredients are things I know and are natural, the other terpenes are familiar to me and a great addition to the product, and finally, I think they chose a great strain for the product.

There, is in fact, a little research on fibromyalgia in regards to medical cannabis and treatment. A small study for migraines as well. I have pondered going on CBD blends of medicinal cannabis for some time. 

This was my first attempt at CBD products, however. I was given 4 samples: Pro Sport, Arthritis deep relief, Severe Powerful Relief, and Odor-free. 

So what do I actually think of the product effect wise?

I have to say I am in love with these products. In particular, I scrapped ever bit I could out of that Pro Sport and that Severe powerful relief is next.

Due to fibromyalgia and my adventures in exercising lately, I have been in a great deal of pain. Perhaps not the sort of 'exercising' other do, but the sort that causes someone with FM severe pain to do. The Pro Sport has been a great relief for that for sure. I moved onto the Severe level thinking I wouldn't get a much relief, but it works just as well. 

I have also been using it with my migraines. We often use menthol based creams on our necks from the pain we get there. Or on our jaw line and even our foreheads. So I have been experimenting with them all in these areas. I must say, I am quite surprised at the success I had with the neck pain. I get daily migraines, so we are talking a constant, endless neck pain. I have been using this daily and my neck pain is nill right now. It is amazing, to be honest. It literally never stops hurting. 

I enjoy the odor free, specifically due to migraines. When my scent sensitivity is in effect it is better to use products with minimal to no scent on them. So that one was great for that.

I didn't get to try it on my more severe nerve pain, as that hasn't acted up in the time frame. But I did give my spouse some to try. The Arthritis one, simply because he actually has arthritis. He believed it worked longer than his usual menthol based cream he gets from the doctor. Perhaps that is because the one he gets is just 10% menthol and nothing else.

Now, would I try it again? That is a hell yes. I would bathe in this stuff. I am going to hoard what I have left I'll tell you that. I am actually pretty picky about topical creams due to scent because it can be such a scent trigger for me. The last one I recommended must have been years ago now.

Please see that HERE for the product they are trying to raise enough funds to set up. Take a look and pre-order if you are interested in trying it out. I hope their campaign turns out well for them. They have a damn fine product. 

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The chronic pain management recipe

Today I woke up with a migraine. It was at a 7 out of 10. I leapt into action. Well, I shuffled slowly into action. This image represents what I did today to manage that migraine:

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It was a non-medication day, you see. Sort of like a medication failure day. Or medication insufficient day. And all the above is accurate, aside from the fact I never did work that nap in. Sadly, because the migraine did work its way upward as the night progressed. BUT for the day I got it down to a 6 and I maintained. Yes, indeed, I maintained my 6 all the way into the evening where it worked back into a 7. But a successful pain management day.

But look at the list, man, look at it. I lay down with ice which generally if you do that for 20 minutes you can reduce your pain by 1 level. Not on the list, but I hydrated myself and made sure to eat. I slathered migraine balm on me (In my case I use Japanese mint oil these days). Did that three times that day. It chilled for a bit and when I felt it creeping up I hydrated myself again. I have this CBD lotion with menthol in it I am doing a review on, and I rather like, so I put that on my neck, shoulders, forehead, temples and my very aching jaw. About three times that day. I will again meditate before bed. 

So all day long I consistently did things to maintain a 6 pain level and succeeded until the evening. I had been reading a documentary book for hours as well so I might have pushed it on eye strain causing the inevitable migraine increase in the end of the day there. I can only read for a certain amount of time before it increases pain.

Depression: the listless stagnant ball of motivationless goo.

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Depression is many things. Currently, for me, it is not suicidal despair due to the medication that enables me to at least temper suicidal ideation. Doesn't mean it isn't still present. And it is, in its motivation-sapping fatigue and listless suck hole of doubt and guilt.

Imagine you are walking along and you are going somewhere important to do important and meaningful things. But along the way, the path gets mired with thick clay-like mud and slowly you get more and more stuck into it. Each step is slower as you have to suck each leg out to press on. Each step you sink every deeper. And it is so so much more effort to get anywhere at all. And then you come to the realization you are going to get anything done when you finally get to where you are going because you wasted so much time getting there. So you feel hopeless and guilty. What a suckhole of a day. Except, what if this is every day? So the next day and the next day, you really feel less motivated to even get started on such a craptastic adventure with so little reward at the end of it.

So there you have it. Less motivation. Less feeling of reward for anything you even do. Feelings of guilt for what you do not do. Sense of hopelessness at lack of progress. Fatigue from minute effort.

Yet somehow, you have to get through that mire and carry on. Well, I haven't been doing so well in that department. The fatigue partly is from fibromyalgia I am sure, but it is intense. I feel this sense of being trapped by my limitations of what I can't do and therefore little that I Can do. And I wonder how I am supposed to succeed this way with the chronic pain and the depression and the fatigue, when I cannot seem to find anything that fits within those limitations I can be productive at.

However, aside from monetary productivity which is my main frustration, there are ways to deal with motivation. By doing. Doing things you normally would do, for short durations, each day. And even rewarding yourself for doing them. Eventually, your brain will begin to feel that sense of its own pleasure and reward from the activity once more. So the theory goes. The idea of routinely doing things works, if we do them. And I do think exercise is a good one as well, if we do it. Apparently, depression is one of those things we fail to keep our goals more often in regards to therapeutic suggestions than most. Likely because one part of our brain is saying, yes, I want to improve and the other half wants to curl into a ball and sleep forever. So maybe we just have to stick to firm routines, firm sleeping times, firm exercise goals, firm productivity goals and this will keep us more structured. My first aim of the new year, is exactly this, set up some firm daily routines. My exercise, meditation, housekeeping and other productivity.

Just maybe with some outward Consistency, some of that will diminish or be easier to conquer. I'm game if you are. But maybe you are not where I am right now. In the listless stagnant ball of motivationless goo.

The brain fog, cognitive dysfunction, and fibromyalgia

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When we are talking about poor cognitive function we have to be precise and to not confuse it with just be absentminded but studies have shown there are real cognitive dysfunctions occurring with fibromyalgia. What is the cause of the cognitive dysfunction seen in the syndrome though? Is the brain aging faster? Is it due to depression or anxiety? Or is it correlated to pain or lack of sleep?

There are many areas where people with fibromyalgia can point to there being a problem but not all of them have been specifically studied. There is what is called Fibrofog the term used to refer to poor concentration. Often people have problems with their short-term memory, their long-term memory, and their working memory. They have troubles remembering the names of objects, people and have problems with facial recognition. When they speak the wrong words come out or they forget what they say in the middle of a sentence. When they are writing they use the wrong words, they mix up their letters, they make odd grammar mistakes and forget how to spell a word altogether. It is the same with numbers; they transpose them and cannot copy them from one page to another without mistakes. They forget how to do simple routine tasks or forget the order to do them in. It is scary and confusing when you do not know what is going on with your brain and what is to blame.
There have been more than a few studies looking into the fundamental aspects of cognition to figure out exactly where the cognitive dysfunctions are and how they compare to others of the same age. This helps determine whether the cause is the brain aging or if the cause lies elsewhere.


Areas fibromyalgia patients perform lower than age control subjects


•    Free recall- such as having a list of words to remember at a later time
•    Working memory- Working memory is quite important for everyday functionality. It is that ability to take information, hold it in your mind and use it in some mental process.
•    Vocabulary tests- Often people with fibromyalgia have problems accessing their vocabulary, not that they do not, in fact, have one. A test could ask a subject to come up with a list of words that start with the letter B quickly and accessing that knowledge would be problematic compared to age controlled subjects.

Cognitive Functioning in Fibromyalgia Patients: ARTHRITIS & RHEUMATISM
Vol. 44, No. 9, September 2001, pp 2125–2133
The ‘Cognitive functioning in fibromyalgia patients’ study published in the journal of Arthritis & Rheumatism compared 23 FM patients with 23 healthy age-matched controls and 22 older control adults. The older control subjects were to compare the cognitive dysfunction reported in FM patients to the natural decline we seen over time as we age. They measured “speed of information processing, working memory function, free recall, recognition memory, verbal fluency, and vocabulary. We correlated performance on cognitive tasks with FM symptoms, including depression, anxiety, pain, and fatigue. We also determined if memory complaints were correlated with cognitive performance.”

According to the study, the FM patients performed more poorly than their age counterparts on all aspects of the study such as working memory, free recall, recognition memory, verbal fluency and vocabulary with the sole exception of information processing. The FM patients performed more like the older controls in the study except they had better information processing and poorer vocabulary. It also is suggested within this study that poor cognitive performances was correlated to pain and not depression or anxiety. The fact that “speed of processing was intact in FM patients suggests that the most basic and global information processing ability—how fast we process new information—is not a problem for FM patients. Our findings do indicate that FM patients have more limited working memory and long-term memory than do age-matched controls. The cognitive symptoms described by these patients are likely to be related to difficulties in these domains.”

Intact speed of processing is quite good news if this study can be validated because it is vital to most cognitive functions. Decline in speed of processing, in fact, might indicate deterioration of cognitive functions and “Speed decreases that occur with age have been hypothesized to be related to age-related declines in dopamine receptors, decreased brain weight, increased dendritic branching that leads to circuitous cognitive processing or decreases in myelin sheath.” However, functionally, on all most other indicators people with FM are operated cognitively twenty years age advanced and even more poorly indicated on vocabulary standards.

Cognitive impairment in fibromyalgia syndrome: The impact of cardiovascular regulation, pain, emotional disorders and medication: European Journal of Pain Volume 16, Issue 3, pages 421–429, March 2012
In the European Journal of Pain a study was published to look at whether high or low blood pressure could be affecting cognition of fibromyalgia patients. Indeed some people have speculated the lack of blood flow to certain areas of the brain is responsible for some of these symptoms. The study included 35 FM patients and a control group of 29 healthy people. This study saw the same cognitive impairment patterns seen in the study above.
It also found pain to play a primary role in the cognitive dysfunction.
“Clinical pain ratings in terms of the number of words used to describe pain were inversely associated with the number of calculations in the FMS sample. Furthermore, when pain ratings were statistically controlled, the group difference in performance was no longer significant. This is in line with our finding that FMS patients using analgesic medication, particularly opiates, performed better than patients not using these drugs. These results corroborate numerous studies supporting the interfering effects of pain on cognition (Grace et al., 1999; Park et al., 2001; Karp et al., 2006; Dick et al., 2008; Glass, 2008, 2009, 2010; Munguía-Izquierdo et al., 2008; Verdejo-García et al., 2009). Pain is an attention-demanding condition that activates brain areas associated with cognitive processing such as the cingulate and the prefrontal cortex (Peyron et al., 2000; Apkarian et al., 2005). One may thus speculate that central nociceptive processing detracts from cognition by requiring enhanced neural resources in the respective brain areas (Park et al., 2001; Baliki et al., 2006; Dick et al., 2008; Glass, 2008; Luerding et al., 2008; Moriarty et al., 2011).”

With the control group blood pressure was a factor in cognitive functioning however with the FM group “the inverse association between BP and performance was absent, which may indicate that the affected patients are protected against the negative effects of high BP on cognition. Taking the aforementioned mechanism into account, it may be hypothesized that the CNS inhibition due to baroreceptor stimulation is reduced or absent in FMS. This is in accordance with the observation that the frequently described reduction in pain experience following experimental baroreceptor stimulation did not occur in patients with chronic pain disorders (Brody et al., 1997; Bruehl and Chung, 2004). It has furthermore been shown that pain dampening during experimental baroreceptor stimulation only occurs in individuals with normal to high BP, whereas in those with low BP this procedure may even increase pain (Elbert et al., 1988; Angrilli et al., 1997; Brody et al., 1997).”

He likewise determined anxiety and depression did not correlate to the cognitive concerns. However, this study shows that blood pressure does not look like it is a factor and that level of pain might very well be an important factor.


Conclusion


Clearly, there is a great deal of cognitive dysfunction with fibromyalgia sufferers such that a person is cognitively function twenty years older than they are. However, many studies have validated that intact speed of processing is not affected which suggests the brain is not in the process of accelerated aging and that is a key difference. Another important thing to note is that these two studies and more have shown that anxiety and depression are not factors in fibromyalgia cognitive issues. The last study suggests that perhaps it is the level of pain experienced that affects cognitive abilities and certainly that does seem like an area that needs to be explored further. However, we are left wanting are we not? There have been other studies showing that pain is an indicator but perhaps because the same area of the brain is activated and it is a distraction. We are left with knowing there are these cognitive impairments but not the specific cause for them or what is going on in the brain with enough clarity to do anything specific about it. Therefore, while we have a few options for pain treatment there is really nothing available to assist a person with some very important cognitive concerns. In fact, side effects can make cause mental grogginess anyway. Discovering what the relationship between pain and cognition in the fibromyalgia brain is a very important area to delve into. It hardly seem probable the cognitive problems are associated with a cause separate from what we know causes pain to be hyper intense. Although, it is rather hard to argue with the theory that pain is distracting, perhaps inherently so, due to its function to grab our attention and focus.


Helpful tips


Until then all we can do to help with our cognition is stick to regulated routines, keep regular sleep habits and keep regular eating habits. Routines establish habits which enable us to remember things easier so we are less stressed. We want to keep our stress levels as low as possible. Sleep habits are difficult to maintain but irregular habits and changes cause disruptions that we physically do not handle well and can cause greater stress and fatigue. Regular eating habits of eating throughout the day, snacking every three hours, will keep our energy levels higher and keep the fibrofog at bay. Using reminders and To-do lists also help in organization. If during the day you feel your concentration waning get up and have a stroll about the office or a walk around the block. The break will energize you and help refocus some of that mental energy. Sometimes changing from one task to another can also get your brain going. Distraction seems to be a component to cognitive issues. Pain being one major distraction. Perhaps along with our over sensitivity to the environment and stimulus to external distractions. Therefore, our ability to pace ourselves and take breaks when needed can certainly help if we are overly strained. Another key is to avoid multi-tasking because it naturally segments your attention into different areas and it is easy for interruptions or concentration issues to make you suddenly lose your focus mid-task. Try not to over stimulate your system with loud noises and bright lights; the less distractions from your environment the better. There is also a little something to exercising your brain with puzzles or brain games. Finally, double check with your doctor to ensure a medication is not having a side effect that may be making these symptoms worse if they are troubling you.

Doctors and Insurance companies

My update on my leave is that my doctor Just Managed to finish the massive amount of information my insurance company requested. Late. Very Late. So I will get it sent off tomorrow. I was hoping to know soon because I thought this was done, but I will not, in fact, know soon. If it was too late, at all
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The stress this is causing is immense. Makes me just want to stop thinking about it. But I can't stop thinking about it because I have bills to pay. How to pay them is indeed an interesting question. Because not working for months is not conducive to paying anything at this point.

I have been eyeing up jobs to apply for because when I get stressed I panic. When I panic I try to come up with counter plans. I think, I could do this. Or this company looks Great. But full-time? I failed at full-time. But full-time would give me financial stability. Then my spouse mentions driving into the city, he doesn't want that. And then I remember my doc said it would be better if I found something online. But I have been looking online and have found nothing. Nothing predictable. Nothing with a decent income that would compensate for my leave. If my leave fails I will need something now now. Even if I cannot do it or function or it isn't good for my mental wellbeing. Admin would be the idea, since that is the least taxing to me. Straight admin. 

My brain always wants to fix the problem of finances. Knowing it won't fix the problem of me in the workforce by doing so. And the consequences of that. I have been on this merry-go-round before. I am immensely tired of it. I know the result of it. But necessity is necessity, is it not? But sometimes the consequences are too high of a price. Which is why I am on this leave in the first place. 

Ideally: I go on CPP and have a wee side job to keep me occupied.

Or
Ideally: I work from home. In something I can do, that makes me the amount of money I need to earn to sustain my budget. And is secure income.

Or
Ideally: I find a location close to home and work a part-time admin job. I know I have been told I cannot do this, but desperate time equals desperate measures. If there was no commuting. No sales just admin. This is a viable third option.

It makes things complicated, to say the least. With my brain wanting to fix things so we won't be so stressed. And me equally not able to function. Maybe CPP is the way to go. I never would have said that years ago. But I am so tired of the pain. It has drained me down.

When confronted with the Lazy stigma

Stop implying I ma weak and that you will never suffer illness. Illness comes to us all..png
I am on leave from work because of depression and pain. I wasn't able to function when I was there and my productivity showed it and my too often bad days, made for too many sick days.

However, when I was there I masked the pain and the fatigue like a Master Class chronic ill person. Because this is a skill I have indeed Mastered. Just like I hide my depression with humor. And I worked at a good office, but I got the impression quickly that a few of them didn't 'get it'.

One of the staff told me when I had come in 'So nice of you to show today'. And it hit me hard. She had been saying little jibes at me for a while. And I think she thinks it is funny. But it isn't funny to be pushing through the pain, fatigue and depression to get to work and then push through even harder to just try and function and have some belittle your efforts thinking when you miss work you are just having fun eating bonbons or something.

We encounter this 'lazy' stigma in many places but work is certainly one of them. They have no idea how much I beat myself up over missing work. They wouldn't need the snide comments if they did. I do it to myself quite well, thank you. I feel useless, worthless and nonproductive and nonfunctional. I feel like I am failing, as a person. Every person that says something like that drives it home that I should be ashamed. I am a grown ass woman and I should work. Just push through the pain harder.

I am not fond of her for those statements but it is expected.  They don't see me at my worst. And at my trying to get through the day I mask my pain. They are clueless to my existence. But what they do know is that someone has to cover my shift. And that is problematic. If someone doesn't cover they are short. If they are short customers are angry. If someone there is covering my shift, they are not doing their job. And this makes them angry. And that anger is projected at me. And it comes out in the form of stigma. Nice for you to show up today. Nice to see you in. I wish I could remember the other things she said that caught me off guard and made me feel horrible but I can't because my memory is crap. In my old office, there were plenty. It was full of stigma on the boss's part. I remember too many of those things. Things that quite damaged my self-worth to be honest. But it isn't about that sort of deeper, darker stigma. This is about people who think you are not in as much pain as you say, you are not depressed at all... you are lazy, and taking advantage of people and the system.

I tend to absorb it like a sponge and not respond. Which isn't good. I think of that office years ago and if I had just stood up and stopped the stigma by explaining the discrimination that was going on to her, to her boss and to HR. Well, things would have been different. But even with one person, or more likely more, I just take it. I wonder what I would say if I were more assertive.

Maybe I would say, "You think you know but you do not. You know nothing of pain. Behind closed doors and what a real high-intensity pain day looks like. You are clueless. The pain I feel right now? You cannot see it, know it or understand it. I have to function through it somehow. You just have to work with no impediments. My brain impedes me inch by inch. And after this day, I will need a day to recover from it. That is nothing compared to a bad day. You think you know me. But you can't because you know nothing about pain that endures forever. Make judgments when you do and not before then. Because when you come to the pain club, then you get the game."

It is a hurtful one. Mostly I believe it is hurtful because we Strive so much, but get nowhere for our efforts. And because we suffer the consequences of any effort, but no one sees the consequences. Not to mention we feel intense guilt for not being as we once were. Not able to do the things we want to be able to do. We know our limitations and at times it grates on us we cannot meet the expectations of ourselves, society and others. We suffer a great deal when we push ourselves beyond our limits, trying to succeed. Such horrible pain. And it only makes things significantly worse.

New Year; Same old same old

Chronic illness to-do.png
Here is what I wrote about New Years Resolutions

We have to be careful about them because we have limited energy and our mood can be hit hard by the failure of too unrealistic goals. So small achievable goals are the way to go. But I have to say after the holidays I have what you can a mood let down. I enjoy the holidays and then there is always this New Year business... and really it is 'oh, another year of This' business. It is exhausting to think of another year. Maybe because I have such intense fatigue lately; anything is exhausting. I mean, New Years came in with a wicked migraine. It was like my brain was saying 'Welcome to the same old same old.'

I have goals in mind. And I hope to make them habits if I can just get around the depression and fatigue somewhat to manage to do things. Not to mention bad pain days, which seem to out number good pain days. Since I have been tracking my migraine days recently, yeah, bad pain days way outnumber good pain days. I haven't been tracking FM pain but that fluctuates like a wave. Always present but then surges higher for a few weeks and then recedes to baseline and then swells up again.

 So small goals... these are a massive deal to us. Each step is a freaking mountain climbed. Don't give yourself Mt. Everest here. Give yourself a small mountain and in four to six months assess your progress on that goal and adjust accordingly. Make it easier or harder. Depending on your progress.

Anyway, I don't feel well in the new year. I always feel a mood drop. Which statistically, by the way, is typical with depression so watch out for That. I am personally taking it a little easy as a result. Pain is high, mood is low. Not the time to be all on top of my goals for sure. More time to be on the self-care zone. Actually, more on the 'get out of bed, get dressed and eat zone'. I wish I could do something about fatigue because that is killer. Feel more like a zombie than anything.

Also, I should point out as a Canadian it is in the midst of the frigid winter here. Not exactly awesome for mood. Or, by the way, pain.

And if you are also feeling this holiday let down feeling I would recommend some self-care. I have been doing some reading and writing. The two things I do to improve my mood. We will settle into normal coping existence again. This is a normal feeling for people with depression to feel after the holidays. Maybe normal for everyone? No idea on that one. Maybe it is. I do know it is also high pain time of year as well. So we have to up our coping skills certainly.


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