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Friday, May 6, 2016

Embarace the turtle #FibromylagiaAwareness




So my advice for fibromyalgia awareness day is embrace the turtle or tortoise if you prefer. I like turtles.

We won't win the race by any means. In this hectic fast paced society we have to take a more mellow approach. For our own wellbeing. But, hey, sucks to be those other people, those hares and rabbits, rushing about frantically I say. They never get any rest and are always stressed. We have forced ourselves to adjust to our illness and that is okay. Maybe it wasn't what we planned, wanted, desired or had ambition for. I get that. But live in the moment. The past is where it should be, the past.

It is okay to rest. We need to take breaks. To take power naps. And understand there should be no guilt in this. We have fatigue and it is part of managing our day. It can give us the much needed energy to get through the rest of the day or go to a planned event. Planned rest or napping actually helps in getting to some event or social activity.

We have to pace. We don't pace and we suffer for it. I of course learned this the hard way. More than once because that is how I roll. I feel like I need to push myself when I feel good, which results in me feeling quite bad and needing recovery time, sometimes for days... then repeat. If we pace our activities we avoid this cycle altogether. And that, is much more pleasant on the body.

We are not what we do. We have more value than what we do for a living. It can be a difficult process to give up a career and go down to part-time or to not work at all, but sometimes it is the very best thing we can do for our health. And it is our wellbeing that counts the most. We are so very much more than a job. And slowly we realize this after we have adjusted.

It is okay to focus on self-care. It is not self indulgent to focus on yourself. To do things that give you pleasure. To do meditation and other things that help with your wellbeing. To spend time socializing. All things are pieces of the puzzle. Chronic pain is stressful. It is a constant stressor and we need to engage in things to reduce that stress and manage our moods. I would say all factors of self-care are fundamental to our treatment just like anything else. 



Moderation is key. It is the game plan. Taking a vacation? Moderate your activities but enjoy yourself. Doing housework? Not in one day your not. Spread it out through the week. And drop that guilt. You are the turtle, damn it! Embrace that turtle lifestyle! Working part-time and feeling not 'productive enough'? You are more than your work. And we moderate our activities. Work is a facet of our lives that needs to be adjusted and accommodated based on our health. We are too hard on ourselves with brutal standards we feel we need to maintain or think others judge us for, certainly we judge ourselves. We need to know our limits and lower those standards to those limits. They are limits for a reason. We should not be exceeding them.

There should be no shame. No guilt. No comparing to a past self, to a perfect healthy self to other people. We are living the chronic illness lifestyle of the turtle. Not the hare or rabbit. As such there is no guilt here. There is what can we do to make an environment that creates the best conditions available and promotes our own wellbeing. And do that.

Embrace the turtle my friends. We will all be happier for it.

Wednesday, May 4, 2016

Mental Health Awareness month


It is mental health awareness month. 1 in 5 people have mental illness. I am one.

I currently have depression related to chronic pain. It isn't the only depressive episode I have had in my life. I had a depressive episode my first year in university to the point I could not complete my first year, had to take a year off and then return. Medication had an adverse affect on me. Turns out all anti-depressants do have adverse affects on me. I have actually had a suicide attempt on one anti-depressant so it can really get quite bad on them. I am currently on Abilify instead.

Now that depression I had when I was 18 was somewhat typical. Leaving home for the first time. The stress of the university life. What added to that was that I had un-diagnosed fibromyalgia an I was having a difficult time coping with it. I was not pacing myself and I was trying to keep up with my peers, which is simply impossible for me to maintain. It took a downward turn when I was put on paxil and decided I didn't need to get up or eat or function at all. And I didn't need to care about anything at all. Not even the things I should. When I realized this suddenly I tried to turn it around but it was too late for the school year. So i took a year off to sort things out. I read a great book on depression at the time. It had this chapter on cognitive therapy and it rang so well with me I just really implemented its advice. I changed a lot of things in my lifestyle. I began to pace myself. And start getting rid out those negative thought patterns. And slowly, but surely worked myself out of the depression such that when i returned to school I achieved honors. Even though the pain had become worse with the onset of migraines.

When I entered the workforce years later after my Masters my migraines didn't take well to it and became daily chronic, instead of 15-20 a month. This added to the FM had a significant impact on my mood regulation. I was unable to sustain full time work... yet I kept trying to push through the pain. In other words... I was exceeding my coping strategies. All the coping strategies I had hard earned the hard way when I was younger were burned out by pushing myself beyond my limits. And I fell into another depression. With suicidal ideation. Which became suicidal intent on anti-depressants I was put on for the migraines and FM. Leading to one attempt. Actually two, since I had another recently. But that was caused by a different medication and was far more spontaneous due to having had the first attempt. Having crossed that line already. Anyway I thought suicidal ideation was normal. That even the deep bouts of depression were normal. Because of the pain. Because of the migraines. Who wouldn't have those thoughts? Prior to the actual suicide attempt I hid it very well. No one would know for certain. I laugh off my pain. Hide it behind a smile. Don't tell anyone I am seriously struggling with it. And I was. Seriously. For years. And years. I had many missed days of work. Many leaves of absence. In a sense a failed suicide attempt was a good thing. That it failed for one. And that it made it out in the open, for another. I couldn't lie anymore, could I? It was right there. Exposed. And I felt bad about that. Embarrassed. That I couldn't control my suffering the pain. And just buck up, buttercup.

And there is a reason for this thinking. My work insurance company, my doctors and my employer were all telling me I had to work full-time. Just push through that pain. Just do it. Just suffer. And it was inevitable that suicidal ideation let to suicidal intent. It was a matter of time really. My doctor was so indifferent about it. I was on a leave for three months. Back to full-time. I knew I wouldn't last long. That something had to change. There was a long term leave. But insurance companies don't like that. So back to work I went. And ergo second suicide attempt. Which I did what I was supposed to do. I called 911. I realized I had gone too far. Realized soon after. It was as I said very spontaneous and I remember very little about it to be honest.

It was really the pain clinic and my family and my new doctor that initiated the change I needed. That it wasn't alright to suffer. That I couldn't exceed my limits all the time. I could not work full-time. That I wasn't capable of it. And I had to downgrade to part-time. Likely forever. That the depression itself had an impact on my pain and as its own vicious entity I needed to once again focus on it. With medication and with thought control. And with mood regulation. As well as pain management. All things I should have had years and years ago but had the wrong doctor. Just someone who was completely indifferent about my pain let alone how that pain was seriously impacting my mood. I had told that man straight up that the pain was affecting me a great deal and I was unable to emotionally cope with it. He simply didn't care. I would have been more direct but there is that stigma of suicidal ideation and depression I didn't want to deal with. I was as direct as I was comfortable with. And if he wasn't capable of addressing the pain issues or the mood issues he certainly wasn't capable of digging deeper. It was my mother that firmly suggested I find a new doctor. It was the most fundamentally important decision I ever made that directly affected the course of my treatment for the better.

So:


  • Be aware of medication side effects that may affect your mood.
  • Don't be afraid of taking medications for mood regulation when needed. It has been such a great thing for me. The psychiatrist was able to find one suitable for me, in my specific case of side effect issues. 
  • If you have an indifferent doctor or are aware of mental illness stigma affecting your care please find a new doctor. It can dramatically change the course of your treatment.
  • Please seek help for suicidal ideation. And immediate assistance for suicidal intent. I waited far too long and then I could have easily died had I not been interrupted at that time. It is terrifying how easy it is to cross the line from thought to action. But it is different ideation and intent. And you can tell when the intent... the plan of action is there. And that is when immediate intervention is needed.
  • If you have chronic pain as well, pain management is never to be underestimated. It can mage a significant difference. Just not right away. And if there is comorbid mental health issues it does take time. 
  • Seeing a psychologist is very benificial as well. Helps reinforce coping skills. I needed the extra support with the depression on top of the pain. I just wan't coping well at all. I needed the extra guidance along the way. A game plan if you will and someone to hold me accountable to that game plan.
  • Take care. Self-care sometimes goes to the wayside but it is very important. We have to take care of ourselves first and foremost. 

Monday, May 2, 2016

Fibromyalgia Awareness month


I will be posting topics of interest for fibromyalgia awareness month and FM day on May 12th. I was diagnosed with Fibromyalgia when I was 20-21.

In my case there was no clear Bam rapid onset trigger event. I had, well have, hypermobility syndrome (also known as EDS hypermobility) and amount other things it caused joint pain and insomnia in my youth. I believe it was this stress to my body that triggered the FM. As time progressed the EDS go more problematic and then I became quite fatigued and had pain all over the body. That became worse. More random symptoms cropped up included IBS. Migraines. Activities became more difficult. Standing for any length of time, staying in any position for any length of time. What complicates the issue to be honest is that EDS has a lot of symptoms associated with it as well. It was just the severity and the duration of the pain. The pain was quite different than I had previously experienced. The fatigue more intense. The insomnia more profound. The fibrofog became an issue. The are comorbid conditions. The difference is that doctors actually, Now, know a little about fibromyalgia even if they don't actually effectively treat it. And they know absolutely nothing about EDS. And I mean nothing. So having the two is complicated. I am told to exercise for the FM but the EDS actually makes that quite difficult for me due to the very specific joint pain. I have have some luck with physio to work on those areas but it is profoundly exhausting. So while one might think the more you exercise the less painful short exercise bouts would be. And they would be wrong. Every bit of exercise is painful for me, which leads me to believe I am doing the wrong exercise for the EDS even though it is the right exercise for the FM.

It was as a teen I began to feel the impact and I was a slow onset case. I cannot to this day determine if it was the EDS getting worse or the FM showing up. I do know I was diagnosed with hypermobility syndrome at 16 and that specialist had seen indications of FM and soft tissue pain. So it sounds like I was on the cusp of full blown FM. However, it was hard to diagnose children back then so it is hard to say. I know I ached all the time. I used to skip school just to sleep. I was just always so tired. I had bad insomnia, as in worse, than it had been as a child but not as severe as it is now. The pain due to chronic migraines makes it worse now than it was then. I had severe headaches around my cycle that I now suspect were migraines. Since I did have auras that I had no idea were auras until much later. Even when I got migraine with auras I didn't realize the ones I was getting then were auras because they presented quite differently. I wasn't overweight and I did exercise regularly. Not like excising helped at that point, but maybe it slowed things down. They may say weight has an impact, but it seems to me the meds they put us on are the ones that cause the weight... so who is to blame there? However I do have close relatives with FM, my father for one. So there is the genetic component as well as the comorbid trigger. So I pretty much believe I was a slow onset case due to the pre-existing condition causing stress on the body. And it wasn't really until that 16 age point that I began to feel the impact of it.

At which... it picked up speed. At the age of 20 I had gone to the doctor again due to the pain being substantially worse. I explained the joint pain was due to the hypermobility syndrome, which the doctor knew nothing about. And said I just felt pain everywhere to be honest. Explained how unwell I felt. How tired. How foggy. How it just felt so much worse than it had been. Now he didn't jump on the FM bandwagon. He in fact did the same the my previous doc did he tested me for RA. And I told him my ANA count would be high. It is an abnormality I have that some people just have without having lupus or RA. It came back high and off to the specialist I went. By then my father had been diagnosed with FM. I had the history. I had worse symptoms. I hit all the check-boxes. All the tender points. And there you go. FM. Horrible test back then with the tender point test. Very, very painful. They no longer do that because someone can have not as many tender points but very high on fatigue and cognitive dysfunction... and still have FM. I actually got worse after my diagnosis. Due to my migraines becoming chronic. Due to developing IBS, which I had not actually had at all.

So that is the bit of my FM history. It was a case of early onset for sure. So I have been chronically ill for quite some time. When I was a kid I used to complain about joint pain due to the EDS but in that case it was manageable and I did do a lot of exercising... not because I am the least bit athletically inclined or a 'team player' but because my mom got my brothers' and I involved in various activities to socialize and for general health. Get us out there and involved. I feel that was the best treatment for my EDS. Considering it wasn't diagnosed and doctors have no idea how to treat it anyway. So i think we did well there. Had that been diagnosed early and treated by that one doctor in Canada that knew what he was talking about back then I likely would have had to do physio to strengthen all those joints. And exercise in specific ways. But even now there is no awareness out there about that. Back then... hypermobility syndrome wasn't even classed as EDS. It wasn't even seen as having all the symptoms it has. Just super double-jointed. Not a collegen problem throughout the body. I am glad that is the one I had and not a more severe case of EDS where it can be dangerous. It was the start of my pain history but so mild that it doesn't stick out in my mind. Well, not true. there were incidents were I stood for long periods of time with my gimpy backwards knees and the pain was immense... then once I sat could not stand again due to the pain. So incidents like that. Speckled in there with many sprains, some not healing well. I envy this pain history. This was the Good part.

Friday, April 29, 2016

The nights of Pain, Depression and Over-thinkking: Perfect Storm


I was talking about triggers with my psychologist in regards to depression. He said he pretty much knew what mine were. And I said good thing someone knows. But in fact some were pretty clear. Two massively big ones: Pain and Over-thinking. And how it creates the perfect storm. How both of my suicide attempts at night in high intensity pain after over-thinking and spiraling into deep depressive states.

These two love to play together at night. Less distractions at night and my pain load is substantially higher at night. My pain generally starts baseline in morning then migraine kicks in a few hours later... then pain just climbs from there until it is around a 9 at night. Not always. I range from a 7-9 on average. Occasionally a 6 when I am lucky. I call a 7 a good day. An 8 a crappy day. And a 9 a high intensity day. It is the 9 that is the problem. 9 and overthinking often spirals out of control down the rabbit whole.

It often starts with something simple like I have to work tomorrow and how horrible that will be in pain. Then it is how horrible it is that I Always have to work in pain. Of course then I think why is it that we have to suffer more and work? Why is it we have to torment ourselves with this extra pain like this? It is like this madness. Intentional madness. That everyone seems to think is a fine idea and we participate in. Then I think... this is my life... forever inflicting more suffering on myself to fit into societies standards. Why am I participating in this endless madness of suffering? Never being able to just suffer in peace. Of course this leads to a massive bout of poor me syndrome of the pain is never going to end. What is the point of this existence if it is just on big ball of pain. I mean seriously, it is a very limited life, of continuous suffering and limitation and it seems like there is no meaning to it except not to make others sad from your demise. I yearn for sleep, knowing I won't get any. Yearn for death, knowing apparently that isn't the answer. (Yearn for no pain is perhaps what I should say because that is the actual truth. I really want the end of the pain.) In the moment the pain is this immense all consuming thing. And the thinking is just making it more Large more Profound more Real.

All that starts on the slippery slope of 'Man, it is going to suck working with this pain tomorrow'. When I have no clue what my pain will be tomorrow.  And I know pain intensities vary. And I know I can have a life with pain.

But high intensity pain and over-thinking and depression is just not a good recipe. Because I can think about literally anything and I will think about the Worst case scenario. I will think myself into a depressive state so quickly it is terrifying. And I do mean terrifying since I have suicidal ideation.

I cannot do anything about the pain at that level. Mediation at that level of pain is out. It is too high to meditate. Just doesn't work. Close your eyes. Breath in. Pain. Breathe out. Pain. Try not to think about how much damn pain your are in. It is like mindfulness on pain. Not a good choice.

What I can do something about is that plague of over-thinking. I am a chronic over-thinker. Always have been. In this case I have to stop myself. I have to stop it immediately at that first negative thought. Stop it and think a more reasonable rational thought.

So... God it going to suck working in this pain tomorrow.  Becomes: I don't know how much pain I am going to be in. Pain varies.

Now if I find the thoughts are exceptionally dark. I will go to sleep. Better to sleep off the mood.

And f I stop the thought I will then fill my time with other things so I don't circle around back to other negative pain induced thoughts. Anything I am capable of doing in that level of pain. Flipping though Facebook. Blogging. Creating content for my page... sometimes I create my best most compelling content that way. People can relate because in the moment I am in a state that is Very relatable. Put on some mellow music and just do some fiction writing. Anything to keep my brain occupied on anything else. If it is a high 9 on the cusp of a 10 then just mindlessly flipping through tumblr, FB of my wordpress feed is enough.

I have to understand that the pain is controlling my mood. Any complex thought. Any stressful thought. Any thought about the future. Anything work related. Anything pain related. Will all be turned against me. And my mood will plummet into the abyss.

Now, of course, I have also been put on medication to prevent that low of all lows where I get suicidal. There is that. And it is vital and important to treat sucidal depression. My second spontaneous suicidal attempt scared me. That I could cross that line so fast without even really thinking or planning. Because it is so much easier the second time. And it means my risk is that much higher. So medication is a must.

Wednesday, April 27, 2016

10 things we are doing for our health that people are not aware of





Every been told that you do not do 'enough' for your health? Like you are not working hard enough to cure yourself? It makes me wonder if people in fact realize all the things we in fact do for our health


  1. Doctors/specialists/tests upon tests- We have appointments coming out of our appointments. We have out doctor and specialists.
  2. Medications. I personally have more medications than my grandmother. Maybe because she is quite healthy and I am not..Point being we take medications.
  3. Psychologist- sometimes this chronic illness and chronic pain cause depression or difficulties coping. So we add that to our list of professionals we see.
  4. Mindfulness/meditation- our pain clinic, doc and psychologist all recommend we do meditations so we add that to our plan.
  5. Supplements- Some supplements are given to us by doctors like Vit D for pain and recommended like B2 for migraines. Others we add in ourselves. Out of pocked of course.
  6. Diet changes- at least a few times in our chronic lives we come across a diet that people swear by and we try that to help improve our symptoms.
  7. Exercise- again recommended by doctors, difficult to do, but slow and steady we do what we can.
  8. Alternative treatments- Acupuncture, massage, chiropractors, biofeedback. We try them all. And some work for us, some don't. If they work we add them to our plan of things to do.
  9. Address our sleep issues: with chronic illness and pain many of develop sleeping problems and we learn good sleep habits, and ways to manage it, and mediation before bed and medication if need be
  10. Most of all we always pace ourselves. We always moderate our activities. We always stay within our limits. Or pay the price. 

Makes you wonder what people think we are going. We are doing everything we can to maintain as best a well-being as we can under the circumstances. Trying our best to achieve a balance.

Next time someone says you are not doing enough for your health list of every single thing that you are doing every single day.

Chronic is chronic. We are not curing ourselves. We are managing ourselves.

Tuesday, April 26, 2016

Small-fiber polyneuropathy and Fibromyalgia






There was an intriguing study done in the University of Würzburg and published in Brain march 9, 2013indicateing fibromyalgia pain is due to small fiber neuropathy. One did wonder at the time if this was a feature of fibromyalgia and if so what was the cause of the neuropathy. However what if it is the case that many people diagnosed with fibromyalgia actually in fact have small-fiber polyneuropahy? This can not only affect treatment dramatically but this is due to the fact small-fiber polyneuropahies are often caused by underlying conditions. If the recent studies on this are accurate then this is a common cause of misdiagnosis with fibromyalgia.


Study: Pain Journal: Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia Painu June 5, 2013. By Anne Louise Oaklander, Zeva Daniela Herzog, Heather Downs and Max M. Klein. Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, 02114; Department of Pathology (Neuropathology), Massachusetts General Hospital, Boston, Massachusetts, 02114.
The study aimed to evaluate whether some people with fibromyalgia might in fact have small-fiber polyneuropathy (SFPN) as an actual cause to the illness. They reviewed 27 people with fibromyalgia and 30 controls for SFPN symptoms and markers. The study made use of Michigan Neuropathy Screening Instrument (MNSI), the Utah Early Neuropathy Scale (UENS),autonomic-function testing (AFT) and distal-leg neurodiagnostic skin biopsies.

Saturday, April 23, 2016

Analyzing my work situation


Even working part-time I have seen a substantial raise in pain. And it is difficult. So I have to look at it logically and see if this is worth it. What exactly am I getting from this.

  1. Income: I am getting money and this is obviously an important factor. I have bills to pay and so forth. I am getting less than my former roll and full-time, but less stress as well. 
  2. Socialization: I am getting interaction with people at least three times a week. I am not one to ignore the importance of this. I feel like a shut in too long at home by myself.
  3. Out of the house: I am getting out of the house three days of the week. When I was off, there were weeks when I never left the house at all.
  4. Productive: I feel productive. I feel like I am accomplishing something each day I work.
  5. Sleep cycle: I feel my sleep cycle is returning to somewhat regular-ish areas. Instead of going to bed at 4am and getting up when ever. I go to bed 1 to 2am and sleep 8 hours. Even on days off I find I only sleep 9 hours. So no over sleeping. Of course, with insomnia I am under sleeping. But a more regular, normalize sleep cycle is a good thing on the plus side.

What am I losing in this?

  1. Increased pain levels. The idea was one day on, one day off. But I am in high pain on work days, and that continues into my day off so I am laid out and useless on that day. So not exactly getting anything done on that day like housework or exercise. I am taking max amount of triptans to keep up. And the painkillers are barely dulling the pain. 
  2. Erratic sleep: Since my brain rather does not like going to sleep early and getting up early, it tends to not sleep much at night on days I work. Maybe three hours. So I am sleep deprived and likely the cause of the brutal migraines. Not much I can do about it when my sleep cycle has never been able to adjust to this.
  3. Increased nausea: Increased migraine pain has jacked up the nausea to epic proportions that even anti-nausea meds cannot handle.

So there is more gain than there is lose. But that pain is a big one. However it is important to note that part-time is significantly better than full-time. The roll I am doing is significantly less stressful... so it requires less work, effort and focus while in pain.

We all sort of have to do this cost vs benefit analysis with our jobs to see if it is working for us. To see if we need to adjust our hours, need flexible hours, should maybe work from home, have a career change or adapt in some other way if it is not working for us. Personally I think I need to continue and see how my pain adapts to the roll. I might have to start taking my triptans at work which I hesitate to do now due to the fact they make me very tired and rather stupid.

Friday, April 22, 2016

Fibromyalgia and stroke risk


 There was a population based study to take a look at whether FM increases stroke risk using the Taiwan National Health Insurance (NHI) claims database. Which enables people to evaluate a groupe of more than a million people followed with healthy controls over 3 years from January 1, 2000 to December 31, 2002. A total of 47,279 patients with fibromyalgia were studies with 189,112 healthy control

There were co-morbids that occurred like diabetes, IBS, hypertension, hyperlipidemia, coronary heart disease and interstitial cystitis, were more common in patients with fibromyalgia and also associated with a higher risk for stroke. The FM group held a 1.25 fold increased risk of stroke when compared with the controls.

In the absence of comorbids there was still a higher risk of stroke with the FM patients compared to the control group. It was particularly high in younger patients with 2.26 fold relative risk.

Increasing age increased the correlated risk of stroke risk there was presented with FM. But with the younger FM patients the relative risk remained high. The results conclude there is a higher risk of stroke with FM.

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