'Out of my head' documentary and The #MigraineProject.

OUT OF MY HEAD, (aka THE MIGRAINE PROJECT) is a documentary film that is in the works right now. The Association of Migraine Disorders has agree to match donations for the project dollar for dollar! People who choose to support this excellent migraine awareness documentary will get double the impact with these matched funds. All of the donations are tax deductible.

If you would like to donate or learn more about the project please click HERE
There is a clip on the site of an in-progress video


Here is the info about the project from there site:
Out of My Head by The Migraine Project is a feature documentary film in the making. We are pursuing the history and mystery of Migraine, and its remarkable place in the human condition.
Migraine is a devastating but fascinating neurological condition with a compelling story to tell. Alice in Wonderland, Vincent Van Gogh, LSD and Elvis all figure into its colorful history
Our film will take a look at the entertaining details, and the big questions too — like the source and management of illness, the economic cost of human disability, and the nature of pain and suffering — while shining a spotlight on the frontiers of neuroscience and the exploration of the brain.
Most importantly, you will hear courageous and wondrous stories directly from migraineurs.
Join us on our investigative journey! You can tweet us @MigraineProject with migraine news, come back here to see new clips and updates as we post them, and help spread the word about migraine.
Lest we forget, The Migraine Project on Facebook

It will be excellent to see the finished product. We need more documentaries of this type to help spread awareness about this disease.  

The #Fibro #Flare up

Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction and cognitive dysfunction. Fibromyalgia pain dysfunction involves an increased sensitivity to pain known as hyperalgesia. People with Fibromyalgia can experience what are referred to as ‘flares’ where their symptoms get more severe.
A survey in Pain Medicine recently looked into the nature of flares to ask people with Fibromyalgia the nature of these flares. They asked opened ended questions to determined how they perceived the fibromyalgia
flares, the triggers of them and possible alleviating factors for them. They were asked how these flare ups are different from their baseline symptoms and how they cope with them. There were 44 participants in the survey.

Primary causes of flares:
• stress
• overdoing it
• poor sleep
• weather changes
Primary symptoms of a flare included:
• flu-life body aches with exhaustion
• pain
• fatigue
Primary treatments were:
• medical treatments (medications)
• rest
• activity and stress avoidance
• waiting it out

The study concluded that the periods of “symptom exacerbation (i.e., flares) are commonly experienced by patients with fibromyalgia and symptoms of flares can be differentiated from every day or typical symptoms of fibromyalgia. Our study is the first of its kind to qualitatively explore characteristics, causes, and management strategies of fibromyalgia flares. Future studies are needed to quantitatively characterize fibromyalgia flares and evaluate mechanisms of flares.”
It would indeed be interesting to see further analysis of the flare phenomena in the future. Particularly the mechanism of it. What is going on such that these flares are so suddenly and abruptly different than the baseline experience? Clearly it is an event that is triggered. However discovering what is going on what a flare could perhaps further what is going on with the entire fibromyalgia syndrome itself.

When flare-ups occur consider these:
• Taking a break- flares tend to occur at times of high stress when it is not exactly good timing for a break. However, no matter what is going on if we push through the pain, like we are inclined to do often, we will pay for it. Instead we should try to ask help from others, ask for extended deadlines, reschedule things if possible and take care of the flare first. Try and reduce what is causing you stress and get that as low as possible. Also take breaks during the day to help.
• The say ‘No’ tip- is very valid again. At this time of a flare it is even more important to protect your time and reserves. No, you can’t take on extra work. No, you can’t do that favor for a friend or your kids school. No, you can’t babysit for a friend. You don’t have to have an excuse, just a polite refusal. You just cannot take on extra things at this time.
• Sleep- Sleep is always a factor in Fibromyalgia symptoms. This means that adequate quality sleep is even more important during a flare up. Getting eight or more hours of sleep is important. Keep to a regular sleep schedule. Don’t nap too much during the day such that it disrupts your sleep at night, but you can have a short nap during the day.
• Relaxation- Doing biofeedback, deep breathing, meditation and self-hypnosis can help take your mind off the pain. As well as distraction methods you may already use, like soothing music or a good book.
• Pacing- We can keep doing activities, at a slower pace, which has been found to be better than not doing activities at all. However we need to know our limits. Slow and steady. We can incorporate some gentle exercise such as gentle stretching, walking and some light yoga. However, if you have an exercise routine consider decreasing intensity.
• Pain management- Use your medications following the schedule you use to manage the pain. If they are not sufficient ask your doctor about them. Use any alternative treatments you might find effective. Acupuncture, chiropractic care, massage therapy, biofeedback and other therapies may be beneficial for your pain management
• Support- It can be difficult to deal with so sometimes talking about it can help. So utilize your support group you have. Either an online support group, real life one, or the people in your support system like family and friend
• Baths- some people find it relaxing to take baths in Epsom salts.

Source: Pain Medicine, January 13, 2015. By A. Vincent, M.O. Whipple and L.M. Rhudy. Division of General Internal Medicine, Mayo Clinic, Rochester, Minnesota.

Considering your #NewYear's #Resolution. Things to Consider.

This year do I want to make a resolution to lose weight, save money or learn a foreign language? Or perhaps something more vague like more tolerance or patience?  Let’s just face it, a nice easy resolution is the best bet. Easily achieved and that achievement will give you a warm fuzzy feeling that you have accomplished something. Having no resolution also works, but then you have to defend your reason for not having one when asked, so it is just easier to make one up. Resolutions regarding improvements to your life style and health are truly worthy goals, but they are quite a bit harder to achieve given they require sustained effort and many obstacles.
            Those of us with chronic pain have some unique challenges when coming up with resolutions regarding our state of being. Pain simply affects the way we perceive goals and the future. I can only assume if someone just broke their leg and I were to ask them what their goals are, the top one would be to fix the leg and eradicate the pain. Not such an easy goal if your pain is chronic, now is it? So not a reasonable goal to set, because it leads to disillusionment and what we are aiming for it accomplishment. More reasonable goals are such things as: learning to cope with pain, seeking alternative treatments, being more persistent with demanding a treatment or considering elements such as diet. All of which would make you feel better potentially, all of which can be tricky to achieve.
            Pain fixes a person in the moment. Your body demanding attention in some way, persistently, such that thinking about any future moment is hazy. In such a way that we must consider pain and its unpredictability when setting goals (or going anything really). Everything becomes an ‘if’. If I am up to it, not in too much pain, not afflicted with various debilitating, nauseating or annoying symptoms then I will do such and such, assuming I am not too tired. And if your life is run by ‘ifs’ it can really make any fixed goals beyond that day rather tricky. You can, on the other hand, have vague inclinations.  I am full of vague inclinations to do things and several vague intentions and plans as well. To set any future, year long. goal you must understand some of those ‘ifs’ will slow your progress and even disrupt it. So to have a resolution to exercise every day, does not take into account the many possible ‘ifs’ that could make that not happen, so it is always better to make a resolution more flexible such as exercising a certain amount of time per week or three days out of the week.
            The next problem is will power. Will power is not a magical ability or a character trait, it is something that be constantly maintained. Will power is putting a chocolate bar within your direct line of sight but telling yourself not to eat it. Obviously if the chocolate bar is not within sight, it is easier to not give in, but then you must use will power again consciously when the chocolate bar is there within reach. That would be the tricky part when you have a chronic illness. For example your desire and intent to go to work every day may be overridden by your health. So while we use a great deal of will power to do things we need to do, the more pain the less sufficient pure will power will get you.  Think about it. All that will power to get out of bed, dressed, fed and off doing what needs to be done, and there isn’t a whole lot left over. Let alone exerting will power to achieve a long term goal, consistently, when your body does not consistently agree with your will. So goals such as maintaining any new routine of diet, exercise, a normal sleep cycle are hard to establish and keep when disrupted by moments where pain and other symptoms completely override your will.  It can be done, as we develop a certain tolerance to base line pain and thus will power is sufficient most of the time. But it is a factor to consider.
            You must understand that pure will power will not achieve your goals. You must have quite a bit of patience to train your body to new habits and routines. Enough positive reinforcement for your successes to get past the pain it causes. Enough forgiveness to keep going even if you slip up once and awhile. And then you may achieve your goal, but if you do not, you must also allow yourself to accept not every goal is achievable. You and your body must compromise on any actions. We all want to be what we once were, to do as we desire, to fulfill tasks because the mind remembers what the body could once do. You are not defined by your illness, but your ‘being in the world’ is.  To ignore it is to set goals that cannot be achieved, which leads to failure and a sense of defeat. It takes a understanding of your limitations to set a goal that can be reasonably achieved.

Sorry I already am loaded up on short term and long term goals right now so no idea what I will specifically choose as a resolution. I am already adjusting my lifestyle. I am already increasing my exercise. I am already doing an infinite amount of things for pain and my health... what more do you want from me?

I mean really.

Yet, every year I think to myself why not add on Another goal.

Well don't.

We do have enough goals. Instead just consider reflecting on the goals that you have established for yourself. Consider things like:

  • Do you have too many? It is easy to be overwhelmed with all the things we Should do when it comes to our health and therefore we pick too many damn things, such that we fail at a lot of them. No progress gets made and we feel horrible. Because we have too many goals outstanding. What is it you want to accomplish? Break it down. Choose the important one. Go for it first.
  • Pacing. Sometimes we give things up too quickly because it takes time to achieve things with a chronic illness. We feel like we should get it done Now. And that just does not happen. Things need to happen in their own time. If your goal is particularly taxing slow it down, ease up on it, decrease your pace... as you get into it you will adjust. Always start slow. Until you adjust. Even with things like meditation. It is hard to get into the habit of doing it. Set aside a couple minutes at a certain time of day you find comfortable and start with some relaxation breathing. Once it becomes habit increase your time. 
  • Give it time: It takes about three months of a consistent new activity for it to become habit. Three months of not smoking. Three months of consistent exercise. Three months of whatever for it to become an ingrained habit After you are consistently routinely doing it. So give it time to build up to consistency and then get to that routine part.
  • I find it particularly helpful for long term goals to piece them up into short term goals and work on them in fragments so I know I am achieving part of my aim. Like step one: 10 minutes of yoga. Do that for three months. Step two: 10 min of yoga and 20 min walk alternating days. Do that for a few months. Step three: begin stationary bike aerobic exercise starting with base amount I can do... which turned out to be 10 min. Increase over six months. That sort of thing. The long term goal is to exercise, but you break it up by starting slow with what you can do, and slowly increase it with activities you can do.... getting more and more comfortable. Changes in diets can work the same way, eliminating certain things first, continue on from there once you are comfortable with that.
  • Just review the goals you have. And figure out for the new year which are the most important ones you would like to continue with. Which are secondary. And which are least important. Put your main focus into your primary goals. Discard the others, or put less focus in them, or longer pacing for them. 

We can have other resolutions of course. Any resolution we want. But I think we have enough health goals to keep us occupied the whole year and then some. It is simply a good time to review those goals. See what is working for us. What is not. What we might want to charge. Or even just change our approach to a goal. Look at it in a new way. Make a new plan about how we might handle it.

Hopes and dreams of the new year

This year is coming to a close. It was a rough one for me. Not going to lie, glad it is going to be done with but it left a mark on me. Hard for it not to really. It was a bad year of pain, grieving and suicidal tendencies.

But we can discard that year and think about what hope we have for the new year. So what are your hopes for the new year?

I hope I can manage my depression.

I hope I can develop an exercise routine.

I hope I maintain my gratitude journal and my meditation schedule.

For those two hopes are for pain management and I hope pain management helps me.

I hope to maintain with the pain. To find some sort of balance. Where working is not the torment that it is currently.

What are your dreams for the next year? What is it you want to do? What are you passionate about? What do you want to achieve? Travel to? Experience?

I have small dreams. I want to continue writing here. I want to continue self-publishing only I wish my marketing would improve to get the word out on my books. My dreams all revolve around writing. It is my passion. It has helped me though a lot of pain. Influenced a lot of books as well. But also gives me that one thing I do for the sake of doing it. Not have to do it. We need those to de-stress and help with mood.

So it is a good time when you are thinking about New Years Resolutions to think of your hopes for the new year and your dreams.

My #ChronicMigraine experience in a few words

May the odd ever be in your favour for not getting a migraine. I got a migraine. And the same the next day and the next day. Ad infinitum. The odds are never in my favour.

Fizzle me pickles stop. I mean... pass me a pop.

I ordered the one with a career I am passionate about. You know the one I went to university for? That one. To make enough to take interesting holidays and invest in my future. Got this instead. Thanks roll of the genetic dice.

That person person with less pain who didn't have depression. Whose brain was not compromised on a regular basis and whose life was going according to plan. Who had friends and good times and was happy.

Because depression does not make this easier.

Doesn't help that people cannot see my pain either. Or that my smile seems to just make it disappear to others.

Or that people do not get it even when you explain it and why bother explaining when they do not get it?

What to do about Stress

So we are stressed. What are the typical things recommended for all this damned stress?

"Cortisol, a hormone produced by the adrenal glands, is sometimes called the 'stress hormone' as it is activated in reaction to stress. Our study shows that a small hippocampal volume is associated with higher cortisol levels, which lead to increased vulnerability to pain and could increase the risk of developing pain chronicity," explained ├ętienne Vachon-Presseau.

As Dr. Pierre Rainville described, "Our research sheds more light on the neurobiological mechanisms of this important relationship between stress and pain. Whether the result of an accident, illness or surgery, pain is often associated with high levels of stress Our findings are useful in that they open up avenues for people who suffer from pain to find treatments that may decrease its impact and perhaps even prevent chronicity. To complement their medical treatment, pain sufferers can also work on their stress management and fear of pain by getting help from a psychologist and trying relaxation or meditation techniques."  News Medical

  • Exercise: Yeah I said it. Motion is the lotion. From just going for a walk to exercising 30min on your exercise bike. Whatever you can do, exercise helps with stress.
  • Sleep: Getting a restful sleep. I know this is pretty obvious and with chronic pain not really always an easy thing to achieve. Because of the pain. Since I have FM insomnia has always been an issue, add pain to that, restorative sleep is not my thing.
  • Balance: Incorporate down time into our days. Add in leisure activities we enjoy. All work and no play makes Jack a dull boy. 
  • Relaxation: Meditation, yoga and relaxation breathing are all in this category. Get your zen on.
  • Pacing: Pay attention to our pacing and ensure we are not exceeding our limits. Ensure we have breaks when we need them. Make sure we do not have too much in the day.
This is the basic template of stress management I have been told many, many times. And have gone through in a pain 101 class at the pain clinic. These are things to help us cope with chronic pain on a daily basis. We may not agree with all of them, but in a way all of them affect different things from stress hormones, to mood, to neurotransmitters and other benefits. All of them put together in fact do help cope with pain and stress if you do them regularly. Sleep being one I cannot do well, but the others I have done.

For life events that cause addition outside stressors that then cause flare-ups. I tend to slack on my routine due to the pain levels, which happens dueing flare ups. I think really the best answer I can think of for these high stress times is.

  • Rest: Take your rest to deal with the flare up of pain. And don't feel guilty about it. It is time you need to deal with the increase in pain.
  • Distract: You can't think about the stressful event all the time so you must distract yourself from it. Either verbally tell yourself not to think about it, stop, and turn your mind to something else. I do this often. Or distract your mind with an activity that uses up your brain like reading or a hobby your enjoy.
  • Sit down for a particular time in the day to write down what you are stressed about. Then plan what you can do about it. Do you have any control over this? Yes, then write down steps you need to take. No? Then make a plan to stop stressing about it. Give yourself half an our of thinking about it a day and no more. Work of your plan 15mins a day, more if it is required by your plan. At no other time are you to think about this stressor.

Nikki- Keep on keeping on

Stress is seriously stressing me out

You know dealing with chronic pain, fatigue, stress, chronic illness and depression is a raw deal. It is sort of this daily battle of crap just from getting out of bed. The first battle: getting out of bed. The next battle trying to pretend it isn't in fact a battle.

This is our every day existence. We have our baseline pain days. Our moderate pain days. And our horrifically bad pain days. We moderate our activities. We have defined limits. We feel like we never get anything done. We feel guilty about what we cannot do. We feel like our brains are balls of cotton balls and just all hazed out. We fumble along just trying to manage things and trying to not think about the pain, that is very much top of mind. The pain eats at our concentration and memory capacity. We feel so very drained of energy from this constant struggle to get our bodies to do things. The fight with chronic pain leaves us with no motivation and no sense of accomplishment.

Yet we get used to the status quo. Or at least try. I have depression as well and so the status quo is very much a problem for me at this time.

However, when any life stress comes along the way, which happens to us all, it is immensely hard to deal with. It just slams into us. Increasing the pain. Increasing the fatigue. Certainly not helping with mood or coping. Not with depression certainly. We don't handle stresses well. Our body doesn't handle it well... due to the fact it is Always at the peak of stress already, by compounding it it is just getting slammed with too much stress. It has a serious impact.

That is where I find myself. Struggling with mood and pain flare ups that are seriously nasty and can't be explained on anything other than the fact I am immensely stressed out. About something I have no control over. It has to do with my insurance company and long term disability and a creditor insurance claim... both of which I have heard nothing from and it is now the end of the year. I expected to hear from both two weeks ago. But again no power to do anything about it. So the stress eats at me. Messing with pain levels. Messing with my already very unpredictable mood.

I am not sure what we are supposed to do with these situations and this high stress. Not think about it? This does not work when you have some very real concerns you have to think about. Not get depressed? Easily said not so easily done. Not worry? That boat has sailed, my friends. I have been trying to just take one day at a time and just do it that way. But Christmas is stressful enough I think without all this added on top. I have been oversleeping because I don't need to think when sleeping and I am very aware that is a sign of depression. But not thinking is better than thinking. The stress remind me of working... because stress of any sort brings with it more pain. Like working does.

Fighting with my moods

 The pain levels this month have been quite high. With hormonal migraine stretches and status migraine stretches and just plain high pain days, with fibro flares. And in waltzes the darker emotions. Leading to those thoughts that are very much darker, emptier and simpler.

They say to me how is it even possible you can return to work Like This? When you can barely get through the day as it is? And I think, I don't have an answer for that. Because getting through that pain level is extremely hard for me mentally and emotionally. I have to monitor my thoughts and emotions. Make sure everything is under control. And even at my best I think will this last forever? When will it end? Can I hold on that long? I must, I must, I must.

But I know if I was working there would be dark suicidal ideation saying to me you can't work, you can't not work. What is this madness? What is this horrific game you play? Why do you have to torment yourself and who makes these rules? That you have to suffer like this? I try to fight it with reason but is it in fact reasonable that someone has to suffer more just to work when they can barely function? It does seem like madness. It does seem like a game I am forced to play for the benefit of others. Like 'look what a success story we got her to work!' All I get is mindless pain.

And with the pain I feel now... I don't want to feel that pain. I don't want to play that game again. I don't want that madness. But they say, it will just be part time. It will be less stressful. But it will be just as stressful. A 9 migraine does not wait until I am off. A status migraine doesn't stop for work days.

I get tired fighting these thoughts all the time. And the stress of it all. Right now the financial strain I am under because of insurance companies debating my long term disability. The fear when I go back to work I will have serious issues because I am still depressed. The pain seems to just rule my days and nights at this point. It is scary to add to that.

drugged driving

 Migraines and driving are a topic all their own, especially when you have chronic migraines. Medications though is something we all have to deal with. We often feel they do not compromise us when we get used to them, but do they? I know when I take a triptan that I feel dopey and excessively tired. I have difficulty thinking. So much so I often hesitate to even take them at work because I have problems working after I take them. But the migraine is worse... so there you go. Driving like that? Not great.

“This limits their exposure to verbal warnings, and increases the likelihood of people having to rely on labels.”
She said more research was needed to understand the effects of medication, as individual responses often varied.
“Some medications can cause a variety of impairments including drowsiness, increased reaction time, loss of mental concentration, shakiness and affect coordination and these all make it unsafe to drive, cycle or use machinery.
“Worse still, impairment can be compounded when combined with other medications or taken with alcohol.” Migraine Again

What concerns me however with chronic migraines is that fact I have chronic migraines. I have persistent migraine auras. I have migraine associated vertigo, which is aggravated by Driving. We wonder about Treated migraines and I wonder about, well, Migraines. A severe acute migraine of about 8 or 9 on the pain scale and Driving? How much of my brain is taken up just thinking about the pain? How much concentration is lost? How much focus is consumed? But we have to work because that migraine is just like the migraine the next day and the next day and the next day. Is it dangerous? Yes.

Some of the scariest driving I have ever experienced is when I was driving and a massive bout of vertigo hit me. It was terrifying. And not to mention vertigo messes with your perception of space... just warps everything. In this incident I felt like I was just falling, then not, then falling... like a freaky rollercoaster. On the highway.

Not to mention auras. Everyone knows you should not drive while experiencing an aura. What if you get persistent migraine auras? What then? Well you have to get to work somehow and so then you drive when they are not severe. Of course it compromises your vision. My vision is literally always compromised.

Then you add the medications, plural, to treat the migraines.

And None of this concerns any doctor I have ever seen. Or any neuro. Because it is more important to them that I work and less important how I get there. They tell me they have no treatment for my migraines. Therefore no treatment for the persistent migraine auras or vertigo. So this is what I have to deal with. If I was able to work in town I believe I would have options, but commuting there is nothing I can do.

Yet people with chronic pain, on medications, drive every day and is this any different? I believe it is important but clearly we are cleared to do it. No one but us considers it an issue. 

That smile

The chronic pain facade is always an interesting topic for me because it is instinctual. We all rapidly develop it to some degree and generally for the same reasons.

Partly to get through the work day if we work in a situation where we have to mask our pain with a smile... for the sake of customers or for appearances.

We often mask our pain from loved ones, to a degree, because we don't want them to worry. However, this is only moderately effective because they are the most likely to notice our pain and be effected by it in some way.

We mask out pain because we ourselves do not want to feel the intensity of it and by hiding it we do not have to communicate how difficult it is to handle.

We mask it because people do not understand it and we tire of explaining it.

And we mask it because our pain makes people distinctly uncomfortable and we realize this, so we try to minimize it to make Others comfortable. So they believe we are not having a problem coping.

We mask it because we do not want to be seen as complaining. As exaggerating the level of our pain. As being hypochondriacs.

And in the end... people understand our pain less. So very much can be hidden behind a smile. My favorite facade is a smile, a joke and a laugh. I am well known for it. And they are stunned when they discover I cannot in fact cope with my pain because I 'present' so very well. It is in fact a very easy skill to develop. And we all have our reasons for developing it. I just believe that sometimes we just do it too well. We stop communicating the pain well to the people that count. When we really are having a problem coping we fail to mention a thing. We internalize far too much. Not everyone I assume. It could be a specific fault of mine. I have been told I am very stoic about my pain. That I minimize it even to doctors, especially to them in fact. I lie very well and I want to believe the lie. I tell it so often I want it to be true. But you can't lie to yourself.

Should we be lying to make others comfortable anyway? I wonder about that. I get there are things people just do not feel comfortable about. But that is reality. The fact I suffer every day is a fact I have to deal with every day. And if I am having a bad day, I am simply not able to function well at all. I should be able to explain that in simple terms. Hell on a moderate day i should be able to say I have my defined limits. I should be able to excuse myself when the pain is too much without an excuse. And I in fact can with certain people. My family and close friends. This is because I understand the reality of my life and I know to not hide around these people.

I still smile through the pain. I still joke my way through it. Laugh it off. Minimize it. Try to make people at ease around me because it makes things easier. I have seen others do it as well with chronic illness. I hear that easy version and see that smile and hear they laugh it off... and see through it. So I think it is a very common thing to do. Because it is common that people are so very uncomfortable with suffering and illness. We feel it and we adapt to it. It is a damn good thing when we have people in our lives that we don't have to do that with. Find them and cherish them.

The looming future of pain.

Thinking about that infinite road of pain is never a good place to linger. It leads to thoughts of hopelessness. It feels overwhelming. It reminds of that past we have gone through. Years or decades of pain and how damn hard it was. We imagine how much worse it will be in the future. How will we do it?

Maybe we won't have to. Treatments come on the market. There is potential things will get better in that future. So there is some flawed thinking when we think of all that pain. Not to mention we lump it all together in a Mass of Pain. Like some massive monster looming in our future waiting to conquer us. That is not how we get through pain. It is day by day.

That is how we should think about the pain. Not this future of it. But today. Every day a new day. Coping with it one day at a time. With our goals small, precise and specific.

Thoughts about this horrible pain future I see often hit me late at night with high pain. I think... this is what there is for me. This is it. And this is false. The future will be like the past. High pain days, moderate pain days and even some low pain days. It will be variable. Then I think, but I will be older, pain does not get better it gets worse. And to some extend this is true as we gain things like arthritis and other pains. But again who is to say the pain we have does not improve as well? We just do not know.

Just don't get lost in thoughts about the future. Don't let the thought of pain consume you.

#Fibromyalgia is a central nervous system disorder

Some researchers are now suggesting that Fibromyalgia is a lifelong central nervous system disorder.

“Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies,” said Clauw. “The condition can be hard to diagnose if one isn’t familiar with classic symptoms because there isn’t a single cause and no outward signs.” Daniel Clauw, M.D
 The pain is essentially being amplified and at its core is coming from the brain and spinal cord. The syndrome is believed to be a disturbance with how the brain processes pain and sensory information.

“Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition,” Daniel Clauw, M.D
A lot of research suggests that opiates are not the best treatment for FM because they do not affect the neurotransmitters involved. It is even implied that with FM and other centralized pain states opiates can make the pain worse. Rather the treatment revolves around gabapentinoids, trycyclics and serotonoin reuptake inhibitors as well as CBT (cognitive behavioral therapy), exercise and stress reduction.

This is not so much research as a statement of fact. Yes, indeed, they have finally settled on the idea that FM affects the nervous system. That is is basically a syndrome of pain central sensitization and pain signals being amplified by the brain. A lot of accumulated research has suggested this in the past. We are long past looking at the muscles to explain FM pain. So there is nothing profound in this statement and I strongly suspect researchers still don't agree on it, despite the evidence.

Locked in the #StatusMigraine zone

I have been in a status migraine since November 27th. 12 days of hell. Status migraines are acute migraines that last longer than 3 days. The pain is immense. Indescribable. It swallows you whole.

You begin to just not see an end to it. It begins to just warp your perception of time. You get locked into the moment of it. Every damned second of pain stretches on and on. You can't focus on anything because the pain is so very loud... it drowns out every other thought.

Thoughts get darker and darker. How can this be manageable? Must just push through... But it is unbearable. Yet there is nothing to be done. All the things that could be done, are done, and nothing works. A status migraine is one single migraine. If nothing works in the beginning nothing works in the middle. It just persists and persists and persists.

You are supposed to go to the ER because this sort of migraine is dangerous. The ER here does not comprehend what a status migraine is so I no longer do that. However, I do recommend it. Because this sort of migraine has caused me a lot of suicidal ideation in the past and I would highly recommend treatment over suicide.

I have taken more triptans than I usually ever take. I am supposed to take them rarely due to side effects, but this pain is demanding it. And as a result breathing issues, chest pains and irregular heart rates. There is no winning with those. But I got these slight breaks. Like a dulling of the pain for a few hours that gave me some sanity back before the pain cranked back up to a 9. However, trying to fall asleep when your heart is skipping and all of a sudden you can't breath is not good either. So I stopped taking them for a few days for a break. Can't take more than 3 a week anyway or run the risk of making a crappy situation worse.

My step-father is getting a pace maker in and I could not even fathom going for a visit to the hospital. The drive alone was beyond me. However, he gets home tomorrow so I think I can manage a visit to my mom's house then. This pain puts a brake on life. All life. On every single thing. I wake up as late as possible. Staying in bed until the FM pain makes that too uncomfortable because as soon as I get up, into the light the pain just gets worse and worse. I have not been able to do anything around the house. I can't think straight.

The blessing is that I am not working. If I was, I would be having suicidal ideation days ago. This pain and being forced to function is too damn much. It pushes me over the edge. I just can't handle the thought of having to perform the next day, smile on face, with this pain. Driving to and from work as well is a torture worth mentioning... one I believe with the pain that much of a distraction is not safe at all. With status migraines I Always miss some work and it always is a problem. But I attend for all the other days of the status migraine hell. And it is agonizing. It is madness. It is torment.

Some things cannot be fixed

We want to fix things. Like they are these little complex puzzles that if we only find the key we can resolve it. Done. But life is not like that. Some things cannot be fixed, which we learn with chronic illness and chronic pain. They can only be carried. We have to cope and deal with the symptoms we have.

There is treatment but there is only so much treatment can do. When we first get diagnosed often we expect great things from medications and treatment. That it will do the fixing. That it may not cure, but it will make us feel significantly better. Like I have had happen with asthma medication and hypothyroid medication.

Then we learn things like chronic pain have complicated treatment for a very complicated problem. One that is not even truly understood by science yet, so the treatment is pretty lacking. So in that respect we will feel pain and suffering even with treatment.

We have to learn how to live with it. To carry it and live with it. To live as well as we can with it. Which takes a lot of coping strategies to do. This is difficult I find. My mind works against me. It says this is not a life. This is not something I should want to live with. I suffer. I suffer more when I attempt more. Doing all the things that are said to be good for me exhaust me because I am already exhausted. So learning how to live well with pain is something we could spend years learning. As well as treating any comorbid anxiety or depression we have as well.

Pain should not stop us from living. From seeing the people we love and spending time with them. From seeing our friends and spending time with them. From working, moderately and in an amount that works for us. When that is possible, because there does come a time when it is not, but when it is there are benefits to it. From engaging in leisure activities we enjoy, and if not the ones we Did, then new ones.

This Cannot be fixed. It must be endured and lived with. We have to find a way to live well with it. As best as we conceivably can. And then be content with that. With that moderation and limits. Not expecting more than that. Not feeling guilty that we should be doing more. Once we understand and know how we should live that makes us happy and content with our lives, we should do that. It should in no way make us feel we are not productive enough, or not enough or not worthy. This is the goal my friends. To live and live well with the pain. To not exceed our limits. To find what happiness we can.

What you #think you #become

The story we tell ourselves about ourselves is important. We tell it to ourselves in all the things we think and we believe it. So what you think is what you become. The good thing is when you notice that is not such a good thing, as in the case of depression, you can change what you think.

It is true as well with our story of chronic pain and what we tell ourselves about our pain. If we say this pain will never end and there is nothing we can do about it we will convince ourselves that nothing will work and it is not worth even attempting new things.

If we say to ourselves this pain is something I have to cope with in order to live my life. I have to find methods and things that will decrease my suffering to increase my quality of that life. Then you will be open to new things that will help you with your pain and suffering.

However just because our thoughts make us doesn't mean changing them is easy. It takes a lot of consistent work. The thoughts we have are habitual. They have burned a neural path in our brain and we think them easily and quickly without even thinking about it. 'This pain is endless and my future will be consumed by it.' So we have to catch them and think what is it about that thought that we would change? 'This pain is endless but it varies. I have good days and bad. My future is unknown. There may be a treatment I do not know about that could be vastly beneficial down the road. I cannot know what comes ahead.'

Depression shoots a lot of negative thoughts at me over and over again. It weights me down quite a bit to have to deal with the stress of thinking about them. Dwelling on them all the time. I know many of them are emotional reasoning, magnification and castastrophizing. But to get rid of habitual responses to stress we have to continually make new neural pathways with our new thoughts. New ideas and rationals. New ways of thinking. Of being.

It isn't impossible I'll tell you that. When I was younger, about 18. I fell into a depression dealing with chronic pain away from home at university for the first time in my life. It was difficult to cope and I became quite depressed. My brain was a broken record of negative thoughts. Over and over. My doctor put me on Paxil. It made me sleep all day and not eat. I flunked classes and got really thin. So I took myself off that crap. Took a year off and recovered myself. And one thing I did was read a book on cognitive therapy which I practiced on myself. Stopping each negative thought I had and analyzing it and replacing it with a more rational one. Eventually it began to work and my mood adjusted, my outlook adjusted, how I dealt with stress adjusted... the way I saw the world changed. I went back to school and achieved honors. So it is possible to do. Now I think my main problem is the pain is so much worse and it conflicts a lot with my goals. But thoughts are thoughts. We can break them down.

Punishing the #pain patient

“We propose that pain intensity is not the best measure of the success of chronic-pain treatment. When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Suffering may be related as much to the meaning of pain as to its intensity,” they wrote.
“Patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substance use or other mental health conditions,” they added.
Instead of opioids, the doctors say that an interdisciplinary and multimodal treatment coupled with coping and acceptance strategies are critical.  In addition, they conclude that a “willingness to accept pain and engagement in life activities despite pain, may reduce suffering and disability without necessarily reducing pain intensity.”hNational Pain Report

In essence what they are saying in the article is that they are trying to find new ways without opiates to treat chronic pain. And one is well teach them to deal with a pain that will never go away.  interdisciplinary and multimodal. It is actually some pretty basic things that we are all familiar with already anyway. So we can accept our pain and still engage in Life, despite it... maybe reducing suffering, but not the pain.

I get that pain is a complicated machine. I get doctors suck at treating it. And I know the approach has to be multifaceted. That is very obvious. We do in fact have to learn things to cope with the pain that will Always be there. We do in fact want to do things that will reduce out suffering.

However, part of this treatment is the medications. For example exercise is an important facet to treatment without medication we have a very hard time even wanting to attempt exercise given the pain we are Already in... why make it so much worse? How does that make sense? And then wait what three days to recover? With the proper pain killers we are able to do the exercise routine recommended to us.

We are also able to function in ways we normally would not be able to. Treatment is meant to help a personal be functional in some respect. Able to walk. Work. Get out of the house. Without it, no treatment is going to enable them to function through work or be mobile.

Without pain management with medications the pain itself is dangerous. The pain itself causes suffering. The pain itself is a suicide risk. These doctors are fools if they do not understand that untreated pain itself is dangerous. What they are doing will work in conjunction with pain medication but I doubt very much without it. You are telling people to suffer and just deal with it. Forever. When they are already frustrated, depressed and tired of dealing with it. Can you see what is wrong with this?

Drop that damn guilt

I was thinking today about work. How this leave is longer than I intended and how I feel very guilty about this. How I went on leave at all and let down my boss who is a great boss. How I wish I was well and this wasn't an issue.

Then I stopped myself and said. No. It is not my Fault I am ill. Not my fault. Not my fault.
And I have to do the things to improve and maintain that health. Ensure it does not get worse. Sometimes these things are necessary and this one was necessary, due to my mental health at the time. I know improvements need to be made. And I should not feel guilty about this necessity.

We have a right to care for health. We should without the guilt of it plaguing us. Situations do not always make us comfortable, but we shouldn't be caring for everyone but ourselves, should we? No we should have our own well-being in mind. When we do it makes it easier to then do the things we can do Within our limits. Taking care of ourselves actually makes easier to handle things with less stress and worry. Because we know we will Not exceed our limits. We will only do what we can and no more.

Catch a guilty that and just tell yourself to stop. You are only human. A human with defined limits. Or do what I said. It is not my fault I am ill. Not my fault I cannot do all the things others can do. I should not be guilty about it if it is not my Fault.

If you exceed them you will feel significantly worse and then the pain will flare and you cannot do anything and will feel more guilty. That is a run-on sentence because that is how it goes and goes and goes.

Think positive... wellll

Why You Shouldn't Tell Someone With Depression to Adopt a 'Positive Outlook' 

When you tell someone with depression that they should try having a "positive outlook", you might think that you are being helpful or that you are providing genuine advice, perhaps on the basis of your own experiences. But what needs to be understood is that, for most depression sufferers, it is simply not the case that it hasn't occurred to them not to be in a state of intense and asphyxiating sadness that engulfs them entirely. Rather, it's that having a "positive outlook" is not possible. Telling someone that they should be happy when they are not presupposes the idea that we somehow have complete agency over our own emotions- after all, we are perfectly able to change the way we interact with and perceive the world if we just made more an effort to think happy thoughts. This is probably not true of people in general, and it is certainly not true of depression sufferers. In that respect, telling someone to change their outlook is simply unhelpful.

But there's a bigger problem here. It is also important to bear in mind that the lack of general awareness of and information about depression applies to depression sufferers as well. Many have never received a diagnosis or believe that their depression is something else, something temporary rather than clinical. Even those who recognise their depression have still internalized the stigma surrounding mental illness and absorbed the narrative that it is something other than what it is- an illness which ought to be given treatment. That means that many people who suffer from depression will continue to absorb the negative messages fed to them by others, rather than simply ignoring unhelpful advice. So when you tell someone that they can alleviate their suffering through a self-initiated act such as changing the way they feel, the fact that they have not done so becomes a personal failure. In effect, this is equivalent to telling them that it is their fault that they are suffering in that way, and their continued suffering is a result of them failing to change things for themselves. Their condition is self-inflicted because they are incapable of cheering up, unlike all the happy, capable people around them.

The fact is I have a talent for thinking negative. You could pretty much mention anything and I could put some doom and gloom on it without much thought at all. It is the natural thought process when you are depressed and one we have to confront all the time.

I have to tell myself that it is fine to feel certain emotions. Like I am very stressed about my long term disability application and I am telling myself any normal person would feel stressed about this. But I have to stop myself from dwelling on it. From making it so much worse than it is. From creating horrific scenarios.  From making myself more stressed and then feeling hopeless and worthless. Because that is the natural track for my thoughts to just spiral down on.

So instead of think positively which, to be honest seem fundamentally empty to me... I think more think rationally. Think realistically. I try to tame these thoughts and contain them before they get out of control. Or that is the general idea.

Fact is when I make myself think a positive thought... I Immediately think of a contrary thought. It just pops in my head. And it feels more real to me. More profoundly real than that flimsy positive thought I put in there just to make myself feel better. Like I am trying to fool myself. And I can't fool myself. I live with this chronic pain reality and it is a difficult one. There are very real facts I have to deal with.

I think of it like slippery slope arguments. You have a negative thought. The premise is sound or skewed. But you don't even pay attention to it. Instead you load on premise after premise that are more and more skewed until you have the worst possible outlook or outcome. And then think that is reality. I loath the irrationality of it but there you go. It is the automatic program my brain runs on. I will argue against a positive premise because it doesn't feel accurate to me.

So the idea, which is damn difficult in practice, is to stop yourself at that negative thought and think about it. What are you really saying there? Does it even make sense? Is it slanted or skewed? And then try and replace it with a more realistic thought. And apparently if we do this over and over and over again we will break our programming. Or affect our mood anyway.

Telling me to think positive is far too simplistic for what I actually need to do. And I will just counter it with something negative. My brain won't allow it to get in. So then I have to counter that with something realistic anyway. It is like I have a broken antenna. It is picking up the negative signals really clearly but only partially picking up the positive ones. At my worst when I am in a lot of pain and depression is this deep dark hole in my brain... a positive thought is like an insult. I bitterly laugh at it. Its insignificance makes me feel worse.

Holiday Article about #Fibromyalgia and #ChronicPain

This is an article I wrote about the holidays. Always a good idea to post it early since part of the holidays is shopping other social obligations like work parties and other events.

The holidays can be a stressful time of year there is no doubt about that. They are busy and hectic. A lot of your time and energy seems to be given out that you simply do not have. It is a joyful time of year but if we are not careful it can be overwhelming as well.
With fibromyalgia there is often a struggle with guilt. Guilt that we can no longer be a great employee or provider. Guilt that we let down our family. Guilt that we simply cannot be what we would have been. For some reason this can rear its ugly head during the holidays because again we have these expectations of ourselves that we simply cannot live up to. Unfortunately we all also have this wonderful idea of what the perfect holiday should be like; there should be family, friends, food and parties along with holiday joy. Yet the fact is on the best of days fibromyalgia limits what we can accomplish. This discord between reality and our ideal image of what should be causes this guilt. Instead we should be focusing on what we really want to achieve and how to achieve it. The holidays are about expressing how much we care for our loved ones and our friends. We are still capable of that without running ourselves into the ground in the process.

What makes your holiday memorable?

Essentially you need to decide what parts of the holidays make it memorable and important to you and your family. Take those important things and eliminate the rest so you are free to focus on the essentials. You can discuss with our family which traditions they find to be most important and defining to them. Some of which can then be delegated to them. Some people have a tradition of a big family meal that is home cooked but maybe going out for dinner, or having take-in where everyone is free to just relax and visit might be fine as well. Some people have decorations all over the house but maybe just less with a tree might suffice. There might be a tradition of baking lots of home baked goods and appetizers but if these were bought instead would that not be a willing compromise? What traditions does your family have that make the holidays special to the family as a whole? Keep the ones that are important and let yourself compromise on the small ones.

Remember the mighty list

Fibrofog hits at the worst times and planning is your friend as are lists. Gift lists are very helpful because you can cross off as you go along. If you are doing a lot of planning for an event yourself then a to-do list or even a menu list might help as well. Remember not every item has to be completed by you

A large portion of holiday stress comes from the last-minute rush to get everything done. Begin to plan your holiday season at least two months in advance. Put your plans on paper so that they are not lost in an unexpected attack of "fibro-fog." Make a gift list, write out menus and formulate a "to do" agenda. The next step is to simplify and delegate. Look at each item on your list and ask yourself, "Is this really important to me and/or my family?" If not, take it off the list. If it meets the importance criteria, ask, "Can someone else do this for me?" If so, delegate it. If not, your final question should be, "What is the easiest way to accomplish this?" Sometimes we make things harder on ourselves than they have to be simply because we don't take time to figure out whether there is an easier way.
Once you have fine-tuned your list, look at the remaining items and try to accomplish at least a portion of your plan each week. Accept the fact that you will have some bad days. Allow yourself extra time in your schedule so that one or two bad days will not ruin your entire holiday season. By not waiting until the last minute to do everything, you might just have enough energy left over to actually enjoy the holidays.

Budget your time: Shopping can be done online and if you have done so then you are a step ahead of the game. If not then decide what you are getting, choose low peak times to go get it and go for the quick in and out. Not everything has to be bought in one day. Shopping all day in a mall can be quite taxing. Plan your own day with what baking you plan to do, what family obligations you plan to fill as well as regular obligations and ensure there is plenty of down time and these are spread out enough. Not everything has to be done immediately. Allow for time for anything last minute so you are not rushing to get something done in a hurry.

Remember to say No: We have limited energy and pain flares for stress and strain can occur if we exceed our limitations. Therefore do not feel obligated to attend every event or gathering you are invited to. Choose which ones you can attend and stick with those ones.

Plan ahead: Prior to going anywhere whether it is to a work party or family events ensure you have everything you might need to assist you. Have any medications you might need to have on hand. Anything that might help makes you more comfortable as well. 

Consider your budget: In these times when money can be more strained it is important to stick to a firm budget and avoid any additional financial stress.

Maintain your schedule: just because it is the holiday season does not mean you should change your routines. Keeping your regular eating habits and sleeping habits are important to maintaining energy and low stress.

Having company over: In regards to housekeeping we often feel the need to clean the entire house for company, which is an exhausting feat. However, people do not trek through the entire house on a visit so clean the areas people will be in such as the living room, dining room, bathroom and maybe the kitchen. Appetizers do not have to be made they can be bought and appetizer trays are a fine compromise. For the meal it-self other compromises can be made such as having someone in the family cook with you or having parts of the meal be bought cooked already. Or alternatively you can ask the gusts to each bring a dish and you can do the main course. Anything that can ease the overall stress of the preparation of the event.

Wrapping presents- If you have problems wrapping presents then remember you can do this task as soon as you have the gift and no need to wait until later. Or use gift bags which are a nice easy alternative.

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