Think about those New Year #Resolutions or health goals


When you have a chronic illness New Years Resolutions can be somewhat intimidating. There are many health orientated resolutions or goals you might want to attain but seem too large to overcome. The guilt of not succeeding can make a person not even want to attempt the process at all. However when you look at your wellbeing as a whole there may be small goals worth adding to your life that can make a significant difference. Each small goal you attain adds up and improves your overall wellbeing. We can even break up larger resolutions into smaller manageable goals.

We all know there are a vast amount of health orientated goals for us to choose from. When it comes to a New Years resolution however this is a very specific goal you want to achieve over the year. So of the vast array of health goals pick one precise thing you think will improve your overall wellbeing in some way. Look at the ways you can achieve this goal and how you want to begin. Remember every improvement is meaningful. 

There are different areas you can choose goals within that will improve your wellbeing:
Lifestyle changes: This can include things like improving sleep quality, changing diet, exercise, relaxation techniques, meditation and mental health.
Life Engagement: This includes increasing social interactions, hobbies, employment and financial wellness or volunteering. 

I know we would all like to 'decrease stress' but that makes for a poor resolution because the factors needed to change that when you are chronically ill are multi-factor. Things you might want to consider that would help would be working on your diet (small changes even), working on your sleep routine and exercise (small amounts at first, going at your own pace). Or conversely adding in the things that help combat stress such as relaxation techniques, meditation, social interaction or that well needed downtime you don't think you deserve. All of those are separate goals.

I think it is important to understand with these sorts of goals that we cannot do everything at once without feeling overwhelmed. And not everything is achieved quickly. So KISS Keep It Simple Sweetie. 

Never compare your health to others and choose goals of things you believe will benefit your Wellbeing as you are now... not what you believe will because that is what you are told. Never let people say they must be large lifestyle changes, when the small goals may improve your thinking, your mental and emotional wellbeing, just as vital and important.

Make a list of long term and short term goals you want to achieve and brainstorm some methods you will use to get you there in a journal. Then make a copy of that list and put it somewhere where you will see it as a reminder. Review these goals Spring, Summer, Fall and Winter... you may have achieve short term ones, some may be habit by then, and some may need to be removed or modified if they are not working for you. But journal or blog about how you are doing with them, what progress you are making, what benefits you get from it.

Try to have defined time lines for short term and long term goals. Short term goals 1- 6 months maybe. And the long term ones can be a year or more.



I had made a list recently on a post of things I was going to incorporate into my week and goals I had... went like this:

1) mediation/relaxation/biofeedback half and hour each day- I choose which one to do but this is not taxing and I think it is beneficial. (This is to reduce stress, potentially help with migraines and something I have been working on with my pain psychologist)

2) some sort of cognitive workout- Do a puzzle or play a game on my Brain Games. Read some non-fiction if my brain lets me. Also half-an hour each day. Likely in the evening when I am alert. (This is to just choose to do something to help keep me cognitively alert. Prevent some of that mental stagnation and lethargy I feel)

3) Do something to boost mood- listen to music, dance to music, watch something funny. For half an hour. (Mood boosting is pretty important and some simple remedies are music, moving to music and, indeed, just exposing yourself to funny things)

4) Exercise- now this can vary. I have a video I can do that is low impact. But I will also be buying Kinect video games so that exercising will be also fun to encourage me to get into it. Three times a week. Whatever I am capable of to start, the aim being to half-an hour... the end goal to an hour. (This is a neuro recommendation, as always. But I do a little exercise to help with fatigue. I choose the type though at this point, meaning the types that do not cause harm. And I choose the pace which works for me.)

5) Get out of the house once a week to socialize. Go for coffee with my mom is the most common option here. But maybe I can call my work friend and go for coffee with them. Or go play card again with my spouses work friend. Has to be mellow, but social interaction is on the list of things that helps so I will add it in there as something I will try to do. (Difficult one for a hermit, with chronic migraines, but I added it because social interaction has positive benefits to our wellbeing. But, that being said, I get some social interaction online, and that counts. I'm just added some out of the house interaction, so that I also get out of the house. But really adding in chatting on Skype, or on Facebook is the same here.)

6) Quit smoking- as you can imagine this would be the neuro recommendation (in addition to the exercise) and will be a hard one. It is going to be done one way or another. (I say as I am smoking) But honestly this time will Be the effing Time. (This seriously could count as a typical New Years resolution, but in fact it is just me wanting to quit again and my neuro saying I really should due to stroke risk. And wanting my spouse to quit, who will not, until I do.)

So I have some goals and not all of them are going to be achieved right away. Exercise is a Long Term goal since FM complicates it and I need to start slow. Others will need to become habit like number 1 there. And 6 hopefully will be a hard but Short Term goal. All of them are designed to improve my wellbeing in some way though. Because I want a foundation on which to do other goals later. I do not want to do too much at once and this seems sufficient for now. 

When I was working before I went on long term leave... a little over a year ago one goal I made was to improve my emotional health. I was in a difficult state, unable to cope with the levels of pain I was enduring on a daily basis, the status migraines, the sleep deprivation and still having bouts of depression with suicidal ideation. Rather scary considering I had tried to kill myself a few years prior, so I knew the potential was there with every one of those migraine induced bouts. How do you improve your mood when you are in that much pain and working, which is causing a great deal of pain? My solution was... I will go to a psychologist and they should have some ideas on how to manage unmanaged pain, stress, sleep and hopefully prevent me from getting into a bad state. It was a very good choice to make because I would not think about the things I need to do to cope with chronic pain quite the same way without them. All the smaller things we can do that help our wellbeing that are just as important. Also helping me with new ideas such as meditation and biofeedback. Obviously treating depression related to pain is a long term goal. So is trying to manage my sleep. But at least they changed my perspective on the issue from just this pain to the whole picture. So choosing goals that help us mentally and emotionally and are not these massive lifestyle changes... are just as fundamental. Maybe a goal is to give yourself more downtime. More necessary time to help yourself recover from a migraine, de-stress, do things that help you.


Peristent migraine #auras (PMA) and #photosensitivity

Persistent migraine auras and photosensitivity do not actually work well together. I'm not sure I have talked about the two issues combined but there is a bit of irony here.

Some persistent migraine auras do there own thing and there is nothing you can do about them. Some seem to be triggered by extreme light. Like a migraine is. Almost seems like you are triggering a silent migraine by the intensity of the aura phenomena and maybe that is the case... hard to say really. All I know is that some aura phenomena statistically occurs when I go outside into a bright day, a lot.

Now photosensitivity for me is not entirely migraine related. It is severe with migraines but it is really quite intense all the time. Maybe that is because of fibromyalgia. Either way I am a sunglasses whenever I go outside sort of person. And I have an affinity for hats as well, since the combo means I can choose different sorts of sunglasses that can be worn indoors as well. But light of all sorts is painful, especially with a migraine. So you restrict it a lot. Especially in your home. Close the blinds. Get dark black out curtains. Use filters on your computer screens, or the Flux program or both. Use lamps in certain areas, indirectly, with nice lampshades... and dim bulbs.

Even a little light in the house when you have the Halo aura Explodes into the blur and fuzziness around it. With starbursts reaching out. Totally obscuring the area around the light, so light in fact obscures your vision with that unpleasant and annoying aura.

But there is one visual problem I get associated with my migraines called Visual Snow that brings out the irony of also having photosensitivity. Visual snow can occur with migraines, also not with migraines. It is not an aura but many neurologists will refer to it as a persistent migraine aura for lack of a better term. It causes the appearance of this constant static in the vision... rapidly moving particles in the vision. This is more noticeable on darker fields and dimmer environments, but it distorts the entire visual field to some extent. Unfortunately the dimmer or darker the room the more distortion there is. So the more comfortable you are light wise, the less visual acuity you have visual snow wise.

So I find it ironic that to reduce pain I like a dim enviroment. In order to use the computer or read it is literally necessary. But I have to tolerate a reduction in visual acuity at the same time. A weird compromise I must say. Because with visual snow you cannot put on glasses and make things clear. You just have to accept there is no clarity. That there is this wall of moving, ephemeral field of particles dancing over everything. I lose details in there. Color. I cannot read the names on the spines of books three feet from me, even though my vision is quite good... and I wear glasses right now (with prescriptions so weak I don't even need to wear them but am told maybe they will help with eye fatigue). So i should be able to. Indeed in daylight I can if I do not also get the warping distortion, the shimmering distortion, the heatwave distortion... all that limits my capacity for fine details. So in dim light, and worse in dark, it is all the pixelized vision.

But a compromise. If I had more direct, bright light. Made the screen brighter. The room brighter. Then yes there would be more clarity, the visual snow would be less intense. But then I would not be able to be on the computer long at all. Other aura distortions would also come into play and make it difficult to see well while I Was on the computer.

When I need clarity though for fine detail... I need light. Light means pain really. I have noticed when attempting to do images on the computer at night... I have some real troubles. I cannot see the details well, or tell color well... it is tricky to know how it Really looks and I wonder if I should save such things for 'daylight' or as much daylight as I permit around here.


Twenty one pilots 'Migraine'


Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I'm alone
I've got a migraine
And my pain will range from up down and sideways
Thank God it's Friday
'Cause Fridays will always be better than Sundays
'Cause Sundays are my suicide days
I don't know why they always seem so dismal
Thunderstorms, cloud, snow, and a slight drizzle
Whether it's the weather or the letters by my bed
Sometimes death seems better than the migraine in my head
Let it be said what the headache represents
It's me defending in suspense
It's me suspending in a defenseless test
Being tested by a ruthless examiner
That's represented best by my despress...ing thoughts
I do not have writer's block
My writer just hates the clock
It will not let me sleep, I'll get some sleep when I'm dead
And sometimes death seems better than the migraine in my head

Am I the only one I know
Waging my wars behind my face and above my throat
 Shadows will scream that I'm alone
But I know we've made it this far, kid
yeah, yeah, yeah
I'm not as fine as I seem, pardon
Me for yelling I'm telling you that green gardens
Are what's growing in my psyche
It's a different me
A difficult beast feasting on lumbered down trees
freeze frame
Please let me paint a mental picture portrait
Something you won't forget, it's all about my forehead
Deny what is important, holds back contents that make Pandora's box contents' look non-violent
Behind my eyelids are islands of violence
My mind ship-wrecked, this is the only land my mind could find
I did not know it was such a violent island
Full of tidal waves, suicidal crazed lions
They're trying to eat me, blood running down their chin
And I know that I can fight it or let the lion win
I begin to assemble what weapons I can find
'Cause sometimes to stay alive you gotta kill your mind

Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I'm alone
But I know we've made it this far, kid
yeah, yeah, yeah
And I will say that we should take a day to break away from all the pain our brain has made
The game is not played alone
And I will say that we should take a moment and hold it
And keep it frozen and know that life has a hopeful undertone


Am I the only one I know
Waging my wars behind my face and above my throat
Shadows will scream that I'm alone
But I know we've made it this far, kid
We've made it this far, we've made it this

I really do love this song. The lyrics express the experience pretty well don't they? 'Am I the only one I know Waging my wars behind my face and above my throat Shadows will scream that I'm alone' ... 'Being tested by a ruthless examiner That's represented best by my despress...ing thoughts I do not have writer's block  My writer just hates the clock It will not let me sleep, I'll get some sleep when I'm dead And sometimes death seems better than the migraine in my head.' ... 'And I know that I can fight it or let the lion win I begin to assemble what weapons I can find 'Cause sometimes to stay alive you gotta kill your mind.'

I really have to thank this guy for making a song that truly expresses the experience as the battle it is. I think that makes the chorus all that more powerful to me really. Raises awareness. And... we battle on right? We made it this far, right?

How Meditation Can Reshape Our Brains: Sara Lazar at TEDxCambridge 2011

My Christmas

I always remember with chronic illness that when it comes to Christmas and holidays really to keep your expectations realistic. You cannot live with this ideal fantasy Christmas that never exists let alone have unreal expectations of yourself or you could give yourself more pain, more fatigue and possibly depression.

What I have always understood also is that I cannot go to every invite I get. When I was working, well, that took pretty much everything I really had in me. And weekends were recuperation time. So I really had to choose any celebration wisely based on the amount of energy it would consume and when it was. Was it a Friday for example, a Saturday... a impossible weekday or Sunday? Was it going to have a lot of people or be loud? Or just  few people or a small dinner? Was it far or close? Had I not gone to that person's last year. Is it for family or just work? All considerations. All variables. A social life and working with chronic pain and chronic migraines, well, they didn't go together but I sometimes squeezed one or two events in at Christmas. Depending on the day. Not always. Not every year.

But there was always family which was the most important thing of all. I have a fondness for Christmas. A lot of nostalgia mostly.

I love my memories of it but I do not expect the present to adhere to them. I don't have children so I don't have them to create memories for. And I don't have the energy to be more than for my family than I am or wish I were. I don't expect more and I cannot be more. I just want to touch the golden bits of my memories I love so much. I just want to hold onto the love I feel for people close to me. I want to buy presents for people I love and watch them open them. I love the anticipation of presents. I love the thought and love that goes into them. I love what is wrapped around Christmas. I love eating and talking and gathering. I love the essence of it, although it changes each time, it is the same. I wish I could have more of everybody I know and care about, but know I can't have too much so I will take what I can take and hold onto to. And I will never be disappointed in that.


So this year I went to a Christmas work party of my spouses'. We had a small party at our house for a few of his work friends. And we went to play cards at one of those person's houses. That is pretty impressive social interaction for two introverts if you ask me. Two hermits really. Intentional on my part. Pain makes your life small. Especially when you have too much of it, it exceeds your capacity to cope and you are working. Your life shrinks in an attempt to compensate. Which mine did a long time ago. It doesn't work of course. Well, it does and it doesn't. You manage to hold down a job, sort of. But people are not designed that way. To cut up their lives until just one part is left. You suffer from that. And that is why your coping strategies begin to crumble. You begin to have nothing left to Live for because you are Not Living. One of the first things a psychologist will tell you for mental health, with pain, or depression, or both... is leave the house, see people, socialize, go for a walk, just be around people... Be In the World. And you wonder 'how do I do this?' People are gone. They left long ago. I had good, wonderful people and in order to work, to be the functioning person in society you all told me is good I had to stop doing things, seeing people, being in the world. And you then wonder 'how can I do this? I have no energy. I'm in too much pain after work. I need to rest on the weekend. There is no pain gap for people if I find them. People need attention and I have none to give them.' That is the sad thing about chronic pain. And the awesome thing about the internet. But I will say introverts like me... we slowly seep into hermits without even noticing because the lack of a social life is so less painful. But the complete lack, isn't healthy. And it isn't fair I think on my spouse, as introverted and sweet as he is, and as nice as he is to say it never bothered him that we only went out every six months. Even though I encouraged him to do so on his own once my brother moved out he sort of just became more of a hermit too. I didn't want him to lack engagement in reality because of me.

So being off work, and trying to see if this does improve one's outlook on life, I thought Tis the season to be Merry. I doubt I would have done so on my own but my spouse works with someone who is a little more extroverted than we are. We went to the Christmas party because a few people he knew were going to be there, otherwise that likely would not have happened. But this particular friend decided it would be a fine idea we have a gathering at our house and set it on us that we should go about doing that such that we went about doing that, even though we had no idea how to do that. It was a great idea. Since then I didn't have to travel. I got to meet a small amount of people in my own home. Then she invited us to her house to play cards which I loved the idea of since my spouse and I used to play cards all the time when we were younger. Again small groups of people and I love that sort of thing. And I love that my spouse is getting out there doing things. And sure not all these things were pain free for me. But I managed them fine. I still enjoyed myself. Price and consequence are easier when there is time for recovery. I enjoyed seeing my spouse enjoy himself. I rarely leave the house, so it is likely a good thing all things considered to see people and talk to people... in real life once in a while. That has made this Christmas different than many years. Many, many years. I hope this is a habit. I get that the daily migraines limit my capacity for doing much and what I do. But a few hours of select socializing once in a while I think is beneficial mentally. Being a recluse I think might not be. I think of it like laughter, good for the spirit. And I can laugh while I am in pain too.

I also went to Christmas at my mom's this year as usual. However, my brother and step brother both did not come this year for different reasons. Which was sort of sad in a way. You expect people to have the same sense of family gather on Christmas that you do and went they don't you get this sense of... disappointment in them. Because they should understand that it means something. But you realize that Christmas is just a day to some people and it means something more to you than it does to them. My brother did send my spouse and I, and my mother as well, a text inviting us to his girlfriends for dinner... that day. Maybe had he said those were his plans a few days ago we might have rearranged things. But my brain is not spontaneous. And it doesn't do two visits in one day. Apparently it cannot handle that. It has not been able to for years. It is One thing a day. And that one thing always triggers a migraine and always brings on pain. Just the light I expect. I cannot control light exposure. And migraines are daily, they will come, problem is once they do and you are in bright light conditions it means it will be acute. Point is, there was no way I was going to make it to that even though it would have been nice to see my brother. I have not seen him in a while as he has not been doing the family thing for a bit. But when my migraine did kick it, it kicked in with digestive symptoms first. So that wasn't fun. After that I took a nap thinking that would help. Didn't. I worked up a real acute migraine. Which I still have. But because I took a triptan last night, I had not woken up with one... that at least worked out quite well for me really. So I have a few good hours of no migraine at all at mom's.

We snacked on some food. Opened our presents. I chatted with my Grandma and aunt on the phone. Chatted with my mom. I got my mom these wee speakers for the lap top or computer that have water spouts in them that light up with color... you plug them in and they spout up rhythmically to sound. We tested them out and I think they are the damned coolest little things ever. She got me these plush, purple pillows for my couch... so soft. These headphones that hand on your earlobes that I have been looking for everywhere! I cannot use the buds or bands because of scalp and ear pain from the migraines... but depending on phonophobia for meditation or relaxation or going for a walk I need some music because I have horrible tinnitus, and I loath the ringing noise (hard to meditate with that sound) and also need headphones so as not to disturb my spouse when using the meditation sleep tracks lol. Anyway, what an awesome gift right? She also got me a wonderful shirt and two t-shirts that fit awesomely. And cannot forget she still does a stocking full of nicknacks for me as well. I love stockings... one of my favorite Christmas things is the wee little surprises in there! So she still does it for me! Becasue she is awesome! My grandmother also sent me a 50buck Chapters gift card... one of my favorite gifts! (As everyone in the family knows. lol). And my mom got me a book as well, as she knew I had not read it, being as it is non-fiction and I don't go through those quite so quickly... and she knew I would love it... looks absolutely fascinating! Just awesome gifts really.

I got my spouse a shirt and a long sleeved shirt for this frigid weather. And three video games (from the place that sells used ones... good deals). I was thinking he might get into them as a hobby when there is nothing on. And they are all two player so we could play together. All sort of the type we like to play on the computer but I got them for his X-box.

He got me 100 bucks in Chapters gift Cards. He knows me so well. lol. A camera for my computer. I had mentioned I had wanted one because there are a few things I could use it for and potentially one day if I can work from home it would be useful to have. And he also got me two video games because I mentioned I wanted video games that require a lot of movement to be used as a 'fun form of exercise'... motivate me to move more and exercise.

Then we came home and after my nap since I was full on migraine we watched a movie a friend lent us (his choice there... horrible country movie blah) and then watched another from our Direct TV I wanted to watch. Nice and relaxing in our PJs.

Christmas has been good to me this year. I have done a lot. I have met new people. Spent some time with some family. Talk to some on the phone. I also hope to get a hold of my other brother tomorrow, since today that migraine really got too painful for a intelligible phone conversation. I am hoping to get to see them sometime soon as well. Then I will have all my family down, except the missing two.

#Depression, the secret we share

“The opposite of depression is not happiness, but vitality, and it was vitality that seemed to seep away from me in that moment.”



In the land of #pain... everybody will get used to it but me

One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.
—  -New Yorker, “What’s Wrong With Me?”
In the land of pain... everybody will get used to it but me. That sentence there makes a lot of sense to me. It is rather true isn't it that pain is always with us but loses its 'freshness' to those around us. We can't really keep saying 'hey, by the way this still damn well hurts' because it just loses 'meaning' and we become 'complainers'. We are trapped in this essence of experience and language fails us.


And in this constant experiential reality you do want to somehow express what is incomprehensible. Like trying to explain color to the colorblind you cannot quite cross this barrier. You are locked in this pain land but they live somewhere else. In another realm. You can try to say 'In this land the rules and laws of my existence run like this...' but in the end the rules of the land they live in are so very different it is hard to grasp the reality you live in. Maybe they might just understand your framework but not why you cannot bend the rules, change the laws and eventually come back to their land. I live in the land of pain and I don't want to. I want to go to your land but I never will. I'll always be this side of the border with my rules and laws to follow. 

And in the land of pain... pain is always part of the framework. Always on the mind. Always present in the moment. Always interfering with reality. That is something people cannot comprehend that is a very simple fact. Pain is Always there and to a minor, moderate or major degree interfering with every aspect of life one can think of. Because we are quite used to it, we can mask it, get around it in some degree, function with it to some degree... but it has an influence all the time. Hovering there in the background. When you have a conversation, it is there, making you stumble with words or forget facts or affects your short term and long term memory or makes you a real zombie. Do you get used to this constant companion? Yes and no. You do in the sense that you begin to cope with it; your limits and moderating your activities. You learn to hide it. You learn to function through levels a normal person would not tolerate. Yet you cannot get 'used' to it like you might an annoying symptom. Pain is unique in that it is a symptom that demands attention. Demands and demands and demands. While you may function with certain levels of it, and hide it well from others... you are not 'ignoring' it... your mind is aware of it and compromised by that awareness. It is saying 'I'm in this amount of pain and also doing this activity or having this conversation'... the more pain the more focus and concentration is lost to the pain. We can never be 'used' to it because our Awareness of it is constant, even if we 'function' with the minor and moderate levels of it. It is really quite a simple concept. If your stomach growls you become aware you are hungry. If it growled all the time, it would be something you would be aware of. Pain being this demanding sensation is not normally there, when it is chronic it is a chronic demand... more pain more demand. So more awareness is taken away from your mind, your focus, consternation when pain is present. Studies have shown how it impairs short term, long term and working memory. Not exactly shocking results, but people seem to just not think about how constant pain can impact a person constantly. And... that is just on their awareness. That is not even talking about lifestyle impact, career impact, social life, emotional, mental, financial, overall well-being and quality of life. How pain leads to suffering and suffering has an impact.

It is our very capacity to function with the minor and moderate levels and mask it behind our facade of well-being... these aspects we must learn to survive in the world with chronic pain that makes it lose its originality to those around us. For if we do not appear to constantly suffer, then we must not be suffering, right? Not only is it impossible for someone to comprehend chronic pain because it is beyond their experience but they cannot observe the behaviors they know to expect from pain with people who have chronic pain... so then they cannot see how much we suffer, they fail to understand the level of pain we experience everyday if we can seem to tolerate it, language fails us because words have no power without the pain behaviors to back them. Yes, indeed, you just cannot say 'Hey I'm still in pain here'... it just loses its meaning.


In the land of pain... everybody will get used to it but me.

#Muscle #Fatigue and #fibromyalgia

We know that fibromyalgia pain isn't in the muscles but rather in pain dysfunction in the brain... and indications in new research suggesting possibly in small fiber neuropathy as well (which is an intriguing line of research to be sure). But what about muscle fatigue?

I know that some of our muscle fatigue must come from inactivity. We are told to exercise and like most people who are inactive... not all those muscles are used to that much activity, or the sort of exercises we might be trying. But clearly it isn't all due to that. I know in my case it has Always been the case, since I was quite young. I just lacked muscle endurance. They fatigued very quickly. I Could lift something. I had the Capacity to do so. My muscles could handle it. But... not for very long. They would tremble and shake, almost immediately and I would have to put it down... or drop it. In fact, I know from experience if something weighs a certain amount I have to lift it a certain way so that when this happens I will not drop it. This is to the extent that some of us have problems holding our arms above our heads for short periods of time... the strength is just sapped right out of the damn things right away. If our Muscles are fine, why is this?

I had always assumed it had something to do with fatigue to be honest. I didn't get why my muscles would just crap out so suddenly when there was nothing physically wrong with them. Even when I was consistently, if mildly, exercising. Made no difference in this jelly weakness issue.

One study suggests it is a brain issue as well... and maybe that is why we get this. Perhaps not the only reason. I mean if there is a neuropathy issue I expect it is more complicated than this. And I expect lack of mobility in severe cases makes this a great deal more complicated. But this might be a component to it. It does make partial sense because no matter how much you do... this issue never goes away.

"Abstract
Objective To investigate relationships between perceived and objectively measured muscle fatigue during exhausting muscle contractions in women with fibromyalgia (FM) compared with healthy controls (HC).
Methods Women with FM and HC completed an isometric muscle exhaustion task at 90° shoulder abduction. Surface electromyographic (EMG) activity in the deltoid muscle was recorded together with self-reported level of muscle fatigue.
Results 25 participants with FM and 23 HC were included. Average time to exhaustion was 254 s shorter in participants with FM than in HC. Participants with FM did not exhibit the same level of objective signs of muscle fatigue, seen as fewer changes in the EMG activity, as the HC during the exhaustion task. The task did not provoke pain in the HC, while participants with FM reported a doubling of pain.
Conclusions Women with FM had shorter exhaustion times and showed fewer objective signs of muscle fatigue during an exhausting isometric shoulder abduction compared with younger HC. This indicates that perceived muscle fatigue may be of central origin and supports the notion of central nervous dysfunction as basic pathological changes in FM" Ann Rheum Dis
So that is an interesting small study that suggests it is central nervous system dysfunction... which does fit in line with the FM MO really.


What can we do about this though? Other than know that certain limitations on lifting are an issue obviously. It is difficult I know for just general chores. And exercising. So basically what I have learned to 'get around' this is essentially break it up. You cannot exercise in large chunks of time I find when you are exercising areas of the body that involve this muscle fatigue and endurance issues... it feels like you have utterly exhausted yourself, even though you really have not. So I find I just exercise in small chunks. I reach that point, take a break, then do more later. And I get in my half hour or whatever, through the day. The exact same with housecleaning... except some things, like washing the bathtub apparently are a marathon freaking event that also cause a great deal of pain the next day. But such is life with FM. Nevertheless, we can accomplish more if we segment it up.

I do find repetitive motions with my arms absolutely draining though. Have to keep switching hands. And also the pain cannot be underestimated there. And can lead to that nasty chestwall pain. So I always had trouble with any job that required any kind of repetitive lifting, actions, heavy lifting... so you know, anything other than a desk job. And also always regret washing walls and the bathtub and so forth. My arms are just weak limp noodles really.

Migraines in the dark... pictures of my life

There is so much of my house that is catered to darkness or soft light. Limited light. Directing light. Making it indirect light. Or softer.


Black out shades in my computer room with blinds down

The hallways to the front door.

Curtains in the front window, with wooden blinds behind... lifted slightly before cat perch so they can look outside.

Bobby on the perch in the room with open blinds on his perch. The 'light' room.

My sunglasses collection.

Going outside means sunglasses for sure. Although I have taken to sunglasses and a hat.

Ah, photophobia...

And all the meds of course... can't forget them



I will rebuild myself stronger than before... a rather easy task in my case I would say


Doesn't that poster make you feel a little stronger? Want to fight a little harder? The fact is with chronic pain and chronic illness our drive to fight cycles up and down because it is a hard battle and hope sometimes is lost. When we regain some glimmer of hope we are boosted up with possibilities again. Not of cures and massive recuperation nonsense but of doing things we believe may make a different. Small, medium or, you never know, could be large differences. We just know with the right tools, or tool-set, it is conceivable we can have some improvement. And the idea of some improvement sounds so damn good. I mean just even a few migraine free days a month sounds like blissful to me... just a nice break in the pain every month.

And, yes, I get my fighting attitude back. Instead of that lackluster existence is what it is attitude. My fighting attitude says to me you need to look at all angles of your health and figure you ways to treat each of them. It says you need to make concise goals to attack that are agreed on by your neuro that make sense.

Then my brain says whoa slow down there. You run into all that you are going to hit a whole wall of resistance from your body that will beat you down a few notches and make you reconsider making too many goals at once.

I say this is not exactly true if I choose to tackle each area carefully.

1) mediation/relaxation/biofeedback half and hour each day- I choose which one to do but this is not taxing and I think it is beneficial.
2) some sort of cognitive workout- Do a puzzle or play a game on my Brain Games. Read some non-fiction if my brain lets me. Also half-an hour each day. Likely in the evening when I am alert.
3) Do something to boost mood- listen to music, dance to music, watch something funny. For half an hour.
4) Exercise- now this can vary. I have a video I can do that is low impact. But I will also be buying Kinect video games so that exercising will be also fun to encourage me to get into it. Three times a week. Half and hour to start.
5) Get out of the house once a week to socialize. Go for coffee with my mom is the most common option here. But maybe I can call my work friend and go for coffee with them. Or go play card again with my spouses work friend. Has to be mellow, but social interaction is on the list of things that helps so I will add it in there as something I will try to do.
6) Quit smoking- as you can imagine this would be the neuro recommendation (in addition to the exercise) and will be a hard one. It is going to be done one way or another. (I say as I am smoking) But honestly this time will Be the effing Time.

And these will be my new list of habits to maintain, not all them of course. I have the existing ones. And others I want to tackle... like my damned sleep. But I want these to be routine daily habits. Get them going now and maybe by the new year I will have a good do on them. Although my quit smoking will not have started until the new year... I'm cutting down as we speak in preparation for the event. And maybe some of these things seem off but some of them are just as important as any other. They all play a role in chronic illness.



The new neuro

It is always interesting when you meet a new neurologist when you have had chronic migraines for a long time. Way back in the beginning you have this optimism that they know a vast amount about migraines and that the medication they recommend has a great deal of potential to do something. After time you realize both of those are flawed assumptions. Generally neuros seem to know the migraine basics but some know more and some are vastly better than others. You sort of just hope you win the lottery there. When you don't it is a horrible disappointment. You can sort of tell immediately that their knowledge base is not that broad. That they do not answer your questions with a great deal of experience. And their recommendations for treatment are simplistic and flawed. And while you have to simply take what you can get at the time it takes a very long time to see a neuro where I am... so a very long wait to see if the next one is any better. A very long time for stagnant treatment options and just enduring pain with absolutely no progress. And yet I am very aware that medications are equally flawed. That they do not provide a great results often. It is like winning the lottery to get any sort of positive result and even that may not last. Few medications even have great ratings for potential positive results. And you run through all the good ones fairly quickly. And then some of the cruddy ones. And then combos. So good neuro or not, medications are not a end all solution. But a good neuro will help with a treatment plan. Will understand migraines are quite a bit more than just pain... although, yes, pain is quite up there on the list of major problems.

The point is, at this point, I have rather low expectations for a neuro. I have had one very good neuro in the past and I was rather left hopeless when he ran out of idea. Not that he just left me hanging... he did refer me on to somewhere else... although I think that referral disappeared when my doc at the time refereed me for a 'second opinion' to another neuro who I was not very fond off. I got rather pissed off with that doctor, just one too many times his disinterest led to more issues and I got around the massive doctor shortage around here by going to my spouses doctor who is beyond awesome. Nevertheless, I was left without a good neuro. So my new doc refereed me on and I was left wondering if this one would be good or not. If he would have general knowledge of migraines or more. If I could work with him or just tolerate him. It was my doctors opinion by the way that because I had run through all those preventatives with no results that a neuro might not be the way to go so she referred me to a pain clinic with the belief that fibromyalgia complicated the situation and treating both might be best. I asked to be refereed to a neuro as well simply because migraines are more than pain... and vertigo and persistent migraine auras are an issue. I thought having a neuro might be helpful in a basic sense as well if they could recommend preventatives geared towards that.

I go meet the new neuro and you know the fellow is quite nice. Younger than most I have encountered and perhaps that is why he was more personable. I certainly know they are not known for their bedside manners but this one was quite friendly. No arrogance or ego to be found. I have liked most of my neuros even if sometimes I disagreed with them or found them lacking in knowledge or they were a bit dismissive about something I thought was pretty important. Personality wise most of them were fine people, except one. This one though was quite nice and Approachable I suppose.

Now beyond that he also was knowledgeable. We had a conversation that made sense. I know some of the research he was talking about and he referenced research which I appreciate... I like to know why he thinks something is important... and telling the a study helps me validate it a bit. It says to me he thinks this because he read up on it. He has looked into this. The fact he new the new way migraines work... means he has looked at recent research. I quite like that is is knowledgeable in this. Everything I asked he answered with a clear understanding. That sounds like a good one for me.

What he said for me though sort of sucks. He said for chronic migraines the best researched effective treatments are Topamax and Botox. Personally I disagree of the Botox from the studies I have read, but then maybe with chronic is does have better potential results. Either way a no-go for me when I tried it. I am on topamax and it isn't doing anything.

So what to do...

First: He wants me to quit smoking. I have the increased stroke risk with my migraines with aura. And then with smoking. He said I really should stop smoking.

Second: Exercise. I need to exercise. He reference a study you can see on my previous post. But he knows fibromyalgia compromises me in this area and to help with this the clinc he works at has a team of doctors, including a physical rehabilitation worker, and psychologist all geared to help me attain that goal. And I said sure that sounds like a plan there.

Third: Since the vertigo inhibits my ability to exercise he will start me on Sibelium 
"Why it is prescribed (Indications) : 
This medication is a calcium channel blocker, prescribed for migraine occlusive peripheral vascular disease, vertigo of central and peripheral origin and as an adjuvant in the therapy of epilepsy. 

When it is not to be taken (Contraindications): 
Contraindicated in patients with history of depression or pre-existing extra pyramidal disorders and hypersensitivity."
I don't mind this med. I have in fact taken it before. Didn't have the vertigo then mind you, or not to this extent anyway. So we shall see. Have to watch out for depression signs though.

So I will be on this for four months. See how it goes. If it goes well then I may be going to their pain management section for the exercise goal.

Now I just have to get a plan of action on the quitting smoking business, which is not an easy feat by any means for me. It has been on my mind for months but pain being as it is, just have not yet done anything about it.

On a side note this neuro does not believe my nerve damage in my hands was due to the migraines at all for the same reasons I do. The one neuro who said it was a stroke...well he really was dismissive and didn't listen that well... the nerve damage is my entire right hand, but also part of the left... that doesn't sound like a stroke. This neuro agrees. As to my original neuro who speculated it was because I always have persistent migraines and then that status migraine such that it caused nerve damage? I never heard of that happening... certainly not in peripheral nerves. And this neuro agreed. He literally said all the things I thought. So since it was never looked into I have no idea what caused the damage, which means it could be idiopathic or something else. Hard to say.

Exercise, migraines and fibromyalgia... what a fun combo


On my visit to the neuro he said one of the goals he wanted to help me with was exercise. The clinic he works at has a multidisciplinary outlook and has a chronic pain treatment force there to help with such cases as mine. Where exercise may help with the migraines but other comorbid conditions sort of have been resisting to exercise. Like in that picture above I have some problems with exercise due to the fibromyalgia. Can't seem to get above a mild level without a pretty significant increase in pain... or really significant back pain that totally screws my mobility for months. So I said this was a damned fine idea because if I have problems it is likely because no one ever said maybe someone should help with telling me what I can and cannot do and how to do it with the body I have. Although I would have though yoga was a good choice, but whatever.

Anyway, all neuros say exercise. And you want to punch them in the face. Repeatedly. And hard. Because we have chronic migraines. When do we exercise? Do they have any idea how painful that would Be? I was always doing it in the small gap before a migraine or with a mild migraine I could do a wee bit as long as I didn't move my head... but it is clear exercise does on thing... it makes the throbbing pain worse, fast. And a mild amount does nothing.

Yes, exercise has benefits. It helps with mood regulation. Even fatigue. It helps to just move when you are chronically ill. I know this, and that is why I do it. But the level needed to show any benefit otherwise I was having extreme difficulties with.

What this neuro did was throw a study at me. And since that is how my brain works, feeding on information, theories and studies... this was of far more value to me than 'go forth and exercise. More than you are. You suck right now.' He said a study on about 1500 people comparing Topamax and exercise (aerobic exercise of 1 hour a day, three days a week) found that exercise had the results as the Topamax did. Topamax being ranked the number one preventative. Imagine if you added the both together. I have no verified that information but it isn't like it doesn't make sense to a degree.

It is just the fact that I immediately thought about three hours a week of aerobic exercise and winced. I wondered how long it would take me to be able to achieve that goal. I knew such a thing would be impossible if I was working given the pain and the fatigue from enduring the pain leaves nothing left for such things. But the potential for such goals is obviously there when you are not working but it also means a lot more Other pain. A lot more fibromyalgia pain while you are adjusting to it. It is exactly what they recommend for FM as well by the way and it is suggested it has good benefits as shown by studies... and that it does not take too long for the initial pain increase to decrease. Unfortunately I have found otherwise with my efforts. I tried increasing the Lyrica in hopes of dampening the pain a bit to no effect. So i do hope with people to guide me in the right direction, with a crapload of pain, I can make strides in this direction.

First though, the neuro is going after the vertigo. Can't rightly exercise a lot if I can't stand or move a lot with vertigo. Until then though I will continue my mild exercise so that I will be as prepared as I can be for the increase.

#SuperBetter... Jane McGonigal talks about how to think about your illness and improve living with it as well




If this method appeals to you then there is a site with introductions into it as well as an iPhone app.  And it is a method... a mind set... we all need ways to think about our illness and cope with the secondary suffering components of it as well as ways to help reduce those secondary components.  Problem is often they seem like a chore, or they don't seem that effective, or the suffering seems so damn overwhelming. But the fact is it is the small things that are effective. A little exercise is effective for this purpose... despite what what doctors might say to the contrary, a little actually goes a long way for mood and mental fatigue. And this does look at all the factors that do improve various areas and help boost things. Hell I have heard all the things I should focus on before and it is really just the same thing but it always seemed like a lot more effort... and when you consider you are in a lot of pain that effort to get out and socialize and do things to boost your mood just seems exhausting.

Superbetter site and game

Superbetter on Twitter

SuperBetter iPhone App


Cold hands warm heart... cold hands and nose and #migraines?

My hands are always blocks of ice. I always use the saying 'cold hands, warm heart'. Especially when I freeze people with my hands. I honestly had not considered it a migraine thing to be honest until I began the thermal biofeedback where they say that your hands get constricted bloodflow with the migraines and cold hands are an indication of this... so they instruct you to try and heat your hands up through the process of biofeedback. And my hands were quite a bit colder than I though they were... running in the low 70's rather than I high 80's and 90's for norm. My right hand slightly colder and more sluggish, but it also feels quite a bit colder, even if the degree difference is slight... I suspect that is from the nerve damage, it feels temperature quite a bit more.
The study compared skin temperature in the face and hands of 41 Finnish women, 12 with migraines and 29 without headaches. A family history of migraine headaches was reported by 85% of migraine subjects and 31% of controls.
Half of the migraine subjects had headaches only on the right side and five had migraines accompanied by visual disturbances called aura. A digital infrared camera was used to measure skin temperature on the nose, cheeks, forehead, hands and fingertips in migraine subjects during a headache-free period, and in controls. The results were compared.
The average temperature of the nose and hands was about 3.6-degrees Fahrenheit lower in migraine subjects than controls. Of the migraine patients, 58% had skin temperatures below 86 degrees Fahrenheit, which is considered a normal skin temperature, in both the nose and fingers.
By comparison, the nose and finger temperatures were below 86 Fahrenheit in 31% and 40% of controls respectively.
Subjects with right-sided migraines had significantly higher blood pressure and lower hand and finger temperatures than healthy controls. The difference in fingertip temperatures was almost 9 degrees Fahrenheit, researchers said. Wall Street Journal

My neuro appointment on the mysterious Paresthesia issue

I had my appointment with the neurologist about the intense Paresthesia sensations have been getting below the waist. The good thing is that there is no problems with my spine from the lumbar area down. He said the last MRI that was done was done on the entire area. Even though one would think the symptoms would indicate something in this area, it definitely is not that. Which is good, none of that sounded in the least bit freaking fun at all. He also said my file reflected my doctor had checked my B12 which was good. I had wondered about that, since it can also cause Paresthesia... sort of thought that might have been a nice easy one. Still reflects my doctor is on the ball there.

He wants to do a MRI from the lumbar area upward to the neck to check for anything that may be affecting the spine in those areas. I had assumed none of those areas could cause such symptoms but I guess not. Still he said I had to be prepared for that to not show anything. Unfortunately I am prepared for that. Having fibromyalgia essentially does prepare one for having things Not show up on tests. But in this case you really do want it to because then they can do something about it. And I admit this symptom is freaking me out in its intensity and the loss of sensation in areas.

Yet Paresthesia, even if it is just this specific area, still is a symptom, while you know is something CNS doesn't really narrow it down that much. Even with the loss of sensation issue, that just suggests I guess that whatever has been going on is blocking something from getting through to the area where the Paresthesia has started at... but then got worse and began to spread to a larger area. I know what makes it worse, but nothing seems to make it better. He asked me what makes it better... and seriously nothing does... it isn't like position is at all a factor. I do know what makes it worse... walking a lot, standing still a lot can do it, exercise most definitely, and going to sleep... as in lying down in one position, especially on my stomach. I know it began with the exercise increase I did that coincidentally came with lower back pain (one sort of makes the leap that the two were connected), but the lower back pain which was very odd and very painful did diminish after I stopped exercising for more than a few months to recover, whereas these symptoms have not... and the exercises I was doing were all muscle groups, as that was the point... but very mild in nature, as that seemed to be all my FM was allowing pain wise.

What puzzles him and I suppose really doesn't make sense when you think about it... is that it is intermittent symptoms. Yes, they are damned intense tingling sensations, and yes at night it can spread down to my feet, can cause numbness in the main area and even weird sensations, even sharp sensations and pain in my feet. But I would say at night and after exercise would be the longest durations of bouts, lasting about two hours? And the rest is sort of intermittent through the day. I sit down I feel it, then it goes away. Get up and walk about, feel it again, maybe it gets more intense, then goes away in about a half hour or hour. Sort of stop and go, but not constant. No constant tingling or numbness like the nerve damage in my hand, which you sort of expect if there is an area of your spine that is literally wonky in whatever way backs can be so. He is not sure what could be the cause of the symptoms right now. I don't blame him considering the area of the back one would think would be generating them is fine and the symptoms themself while strong are not always 'on'.

I should have asked if this could be some really strong reaction to Topamax. I didn't think of it. Should have though. Might be worth going off it just to see. I know back in the day when I was on it the first time it caused Paresthesia as a side effect in my hands, feet and face... but not that strong and not in the body area.

I just don't like it. I don't like having peripheral neuropathy that doesn't make sense and I don't like this 'haywire' sensation and lack of sensation business that likewise does not make sense. That is a lot of CNS business that does not make sense. So when i say I rather hope I have something wonky and treatable with my spine I only mean that in the sense that it is preferable than something unknown and wonky lurking there under the water. I will deal with it as with all things if I am told it is under 'random miscellaneous nerve issues' but I would rather not, say ten years down the road get permanent nerve damage in my feet and have them go 'oh right Now we know what it is'. That would just suck. Also I know from experience that intense tingling Paresthesia may be very annoying and preventing me from getting comfortable at night... but prickling, electrical, stabbing or burning Paresthesia which are still the same thing in that region would be Far worse. And that is aside from the lack of sensation issue, which is a rather big issue... since That is not intermittent, which isn't Paresthesia as far as I know but may be caused by it, isn't numbness but is just a lot less sensation.

He did suggest I think about the type of exercises I do. Which actually my mom suggested as well. It does seem to be just activity in itself. But I do know a very low impact video I got to replace the exercise I was doing did seem to not be as bad... well not on my back anyway. I suppose I will have to test whether it affects anything else. But really sort of have to move the back and if it is in fact somewhere else in my back sort hard to figure that one out.

Prolonged migraine auras and Triptans

I just had a WTF moment as I randomly was looking at information for something else. Sometimes you hit something and it just knocks you upside the head. In this case because I have had permanent nerve damage in my hand I was told was caused by the viscous status migraine I had, as it occurred during it, but that it has happened because of the status migraine and the fact I always have as it were this pre-migraine state... the persistent migraine auras. Another neuro said, well, it was likely a stroke in your sleep, which then caused the nerve damage. Either way, nerve damage from migraine. Sucks, but there you go.


But... then this wee tidbit. it turns out that triptans and ergotamines are contradicted for treatment in prolonged auras, just as they are for HM and basilar migraines and for the same reason... an increase in stroke risk. Advanced Therapy of Headache Book It Is a good place to find a reference for what I was talking about.

Third, triptans probably do not work for aura,
and may in fact be contraindicated in prolonged aura.
Three randomized controlled trials found administra-
tion of triptans during aura did not terminate aura or
prevent the migraine which followed the aura, using
sumatriptan 6 mg subcutaneous, zolmitriptan oral
20 mg, and eletriptan.
4-6
However, 1 small controlled
study with oral sumatriptan 100 mg reported success
in preventing the migraine in 34/38 (89%) of auras
treated.
7
These 4 trials show triptans do not work to elimi-
nate aura. Use of a triptan to try to clear a persistent
aura is not evidence-based, and is bound for failure.
The question as to whether a vasoconstrictive agent
might be harmful for a patient with a fresh infarction
is another concern.
Clinical pearl: don’t use triptans
during aura or for persistent aura. (TEACHING CASE: MIGRAINE STROKE)
Juan Gonzalez, MD
Chief Resident in Neurology, Dartmouth Hitch-
cock Medical Center

Over and over I have read it is contradicted and not to be used. In one article I read it said some headache specialists might use them 'with caution' and supervision' and I would assume... if their patient had nerve damage or a stroke, they might reconsider that. One would think.

This would have been nice to know since I have had a persistent migraine aura for decades and have been on triptans since I was diagnosed. And for a while there even estrogen birth control. And that I actually had nerve damage from a status migraine, which is very odd indeed, blamed on the my prolonged auras and the status migraine, or as the other neuro asserts I must have had a stroke.

And knowing this as they did... I am Still on triptans. Even though clearly that could be a freaking factor. I think the neuros treaking me are not aware of this risk at all. Or simply did not find it to be a valid risk. But can we pick and choose risks when migraine with aura comes with more stroke risk already? I mean the birth control with estrogen is an absolute no now... so what about this one? No, but maybe, depends on whether your neuro likes triptans and has a stigma against other treatments?

Or they read this very small study with 13 participants, which meant maybe one or two had persistent migraine auras.:

Triptans in the treatment of basilar migraine and migraine with prolonged aura.

Colorado Neurology and Headache Center, Denver, CO 80218, USA.

 OBJECTIVE:To report on the use of triptans in migraine with prominent neurologic symptoms.

BACKGROUND:

As stated in their package inserts, the triptans are contraindicated in patients with basilar or familial hemiplegic migraine, and physicians are reluctant to prescribe these drugs to other patients with prominent or prolonged aura.

METHODS:

We evaluated 13 patients with basilar migraine, familial hemiplegic migraine, or migraine with prominent or prolonged aura who had received triptans.

RESULTS:

Excellent; no adverse events.

CONCLUSION:

The contraindication of triptans in basilar migraine should be reconsidered. Similarly, prominent or prolonged aura may not represent a reasonable contraindication to triptan therapy.
Well I don't feel very comforted on that one thank you very much. Your very small study of 13 individuals does little to assure me there are not complications that can occur in All of those, even if it was 13 of Each, and it wasn't. I think you might want to research that a little bit more. So I think they should 'reconsider' that a whole lot more. I have known people who have had strokes from changing triptans. Known people who had strokes from trying triptans. So if a person has a contradiction based on type of migraine or prolonged auras... I take that seriously.

Also... migraine with auras are contradicted with use with beta blockers. Same reason. And before I had asthma... I had tried out two beta blockers that I remember. So clearly that was Also not something that was considered, even though That one was not something that was waffled on... it was a do not put them on beta blockers thing.

Sort of freaky that I was not aware of this. And sort of freaky I don't think all the neuros I have seen are aware of this.
 

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...