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Saturday, October 22, 2016

Between hope and hell

Stuck between hope and hell. I am in hell right now. I can't work. I can't function. Daily migraines, fibromyalgia and depression. It is depressing and frustrating. It fills with me with anxiety because I don't know if the insurance company will comprehend my situation enough to support my appeal for long term disability. Which I need due to not being able to work. But I Hope for my botox trial which will take 9 months to work and actually improve my pain in Some way. I hope that new migraine med coming on the market next year comes out in Canada at the same time because I hear it is so promising. Because I Hope for some pain relief and some return to some functionality. 
Yes, I cannot work in any outside of the house job full-time or part-time. But I Hope to find a niche online where I can work from home. It may require schooling or training or I may find something I am qualified to do. But I hope to do that in the future because it appears to be the only work option available to me that will work in any way. 
No one wants disability long term but we need it sometimes in the short term while waiting for treatments to help us hopefully function better. I am in such a bad spot with everything right now and of course I can't function outside of the house. Not with the pain the way that it is. When you try to push through pain, it simply pushes back in the worst way possible and you just end up missing work as a result. Finding viable treatments though is the first step... waiting for them, then waiting for them to work that is what takes time. Then you are still left with chronic migraines, so you still need to find viable work options, which is why working from home is what I need to seek out.
It is always hope and hell. Hope is what keeps us setting goals, trying new treatments and persisting and striving. Hell is where we Live. We need to think there is a light at the end of the tunnel. Or make a light there. So we can strive for something. So while I need to get on disability I hope to get treatment and find a remote job. What I Need though is to manage this pain. I need that bad. 

Thursday, October 20, 2016

MRI brain scans show FM 'brain signature'

In the study found the journal of Pain August 31, 2016 it looks like they may have found a way to diagnosis Fibromyalgia using MRI scans. They identified a brain signature that specifically characterizes fibromyalgia central pathophysiology at the neural system level using fMRI.
The study included 37 FM patients matched with 35 healthy controls; and it analyzed responses to a) painful pressure and b) non-painful multisensory (visual-auditory-tactile) stimulation with a fMRI machine. 
We used machine-learning techniques to identify a brain-based FM signature. When exposed to the same painful stimuli, FM patients showed greater Neurologic Pain Signature (NPS, Wager 2013) responses. In addition, a new pain-related classifier ('FM-pain') revealed augmented responses in sensory integration (insula/operculum) and self-referential (e.g., medial prefrontal) regions in FM, and reduced responses in the lateral frontal cortex. A 'Multisensory' classifier trained on non-painful sensory stimulation revealed augmented responses in insula/operculum, posterior cingulate, and medial prefrontal regions, and reduced responses in primary/secondary sensory cortices, basal ganglia and cerebellum. Combined activity in the NPS, FM-pain, and Multisensory patterns classified patients vs. controls with 92% sensitivity and 94% specificity in out-of-sample individuals. Enhanced NPS responses partly mediated mechanical hypersensitivity, and correlated with depression and disability(puncorrected<0 .05="" and="" clinical="" correlated="" fm-pain="" multisensory="" p="" pain="" puncorrected="" responses="" with="">
If this can be replicated this characterization based on pathophysiological, symptom-related brain features may enable for objective neural targets for therapeutic interventions. It looks to be about 93% accurate. 
"The novelty of this study is that it provides potential neuroimaging-based tools that can be used with new patients to inform about the degree of certain neural pathology underlying their pain symptoms," said Marina López-Solà, a post-doctoral researcher at CU Boulder and lead author of a study published in the journalPain. "This is a helpful first step that builds off of other important previous work and is a natural step in the evolution of our understanding of fibromyalgia as a brain disorder."
One patient advocate calls the use of MRI brain scans a breakthrough in fibromyalgia research.
"New cutting-edge neurological imaging used by CU Boulder researchers advances fibromyalgia research by light years," said Jan Chambers, founder of the National Fibromyalgia & Chronic Pain Association. "It allows scientists to see in real time what is happening in the brains of people with fibromyalgia. 
"In fibromyalgia, the misfiring and irregular engagement of different parts of the brain to process normal sensory stimuli like light, sound, pressure, temperature and odor, results in pain, flu-like sensations or other symptoms.  Research also shows that irregular activity in the peripheral nervous system may be ramping up the central nervous system (brain and spinal cord).  So the effect is like a loop of maladjustment going back and forth while the brain is trying to find a balance.  This extra brain work can be exhausting." 
Pain News Network

Wednesday, October 19, 2016

I own my pain

Just because you cannot see my pain doesn't mean I have to validate its existence to you. I don't owe anyone proof or an explanation of my pain. If they doubt its existence that is on them, not me. What I do need to do is manage my pain to live the best life that I can with it. And that is a damn hard job to do. Chronic pain is very difficult to manage and with comorbid depression I have a bit of a battle on my hands the best of times. I generally don't care to explain that battle. I generally don't care to express it. Or share it. And I don't have to. We have a select few who truly matter that may get a window into our existence that really matter. The rest? We owe them nothing.
Coping is a deeply difficult journey that we are on. I doubt anyone can comprehend it that hasn't experienced it. It is not just that it affects every aspect of our lives, all the people in our lives but it changes who we are as well. It is also something we have to Live with. It actually never stops. And accepting that fact is also extremely difficult. We all want a cure, but we have to accept that realistically it is in our best interests to pursue the most improvement we can. Live the best life we can. Knowing that might mean compromises we never wanted to make.

Saturday, October 15, 2016

Review: AxonOptics

"I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "
I have the pleasure to review and try out Axon optics migraine glasses. I have been looking to try these out for some time to replace my rose colored specs.Due to the fact my rose specs are just a rose tint and the Axon glasses have the FL-41 tint that has been specifically researched for photosensitivity. It has been on my Want list for some time.
I thought this picture was too perfect Not to take. How cute is that?

Here is me modeling my new specs of the Hannik model. My first impression visually was that they were too big for my small head, as most specs are. And the style suggests medium small to large, but I had not noted that. So, I assume my head is small small. I actually didn't need to be told that. I have an issue with buying glasses due to the narrowness of my wee head. Anyway, these sort of give me a Bono look as a result... which I rather like. I could use the cool factor. Well, my mom said Bono. My spouse said Elton John. Let's just say, I look awesome and leave it at that.
Second impression I like the full coverage. And to be honest I like the fact that they cover a large area visually. This whole visual field is enclosed in within the glasses so the entire area is with the filter... and that is a real bonus from my experience with my rose specs, where since they are normal specs there is obvious gaps. I always found that a limitation with my regular specs. So this particular style of migraine specs, is definitely full coverage. I think, as well, this style would make an awesome outdoor pair, so with the darker tint.
They have soft spots for the ears that makes them easier to wear long term. However due to my FM, TMJ and migraine allodynia the hugging style causes sensitivity there for me. I may have to adjust that. They have soft rubber around the inside of the frame at the front so it sits snug to your face, lets in little light and sits smoothly to the face without discomfort. Very smoothly sits to the face, letting no alternate light in there. That alone, makes them perfect. They sort of just hug the face gently.
This pick shows some aggressive light. My spouse often leaves this bit of the blinds open for the cats or he can see out. And it is very stabby stabby lighty lighty. Wearing the glasses I didn't even notice then i took them off and got stabbed right in the eye socket. So this just shows that, yes, indeed it was calming the light spectrum down quite well for me.
Here is the thing about photosensitivity. We light avoid. Because it is painful. And we wear dark sunglasses. But this actually makes our eyes adapt to that, making them more sensitive to light. Which is why these sort of specs are what we need, they are eliminating the light spectrum that is causing issues with light sensitivity but leaving the remainder, so we are not adapting to a darker environment
There is research behind this. I read about it at the time in fact. They have a list of the studies you can look into yourself HERE... it is interesting work.
Here is but one:

Specially tinted Lenses Are Effective in Relieving Migraine Symptoms and Other Photophoba Conditions

A review of photophobia treatments conducted by researchers from the John A Moran Eye Center at the University of Utah Health Sciences Center found FL-41 lenses to be effective in alleviating migraine pain and frequency, as well as overall light sensitivity in patients with photophobia. They suggest patients with migraine are especially sensitive to light with specific wavelengths, and FL-41 lenses help reduce symptoms by filtering out these wavelengths from the light spectrum.
Source: Katz B, Digre K. Diagnosis, Pathophysiology and Treatment of Photophobia.  Survey of Ophthalmology. 2016.02.001
And they work. Simple as that. The light is far less aggressive. Wearing them you barely even notice the tint but light is softer and less painful to endure. These quite simply put are a migraine necessity. And frankly I have photosensitivity even when i do not have a migraine due to FM, just not as aggressive as when I have a migraine, so these are something value to have available all the time. It is like having Flux on your computer, it is one of those aids we can have that enables us to be in areas with horrible light conditions like florescent and so forth without having more aggravation from the existing migraine or triggering a migraine. 

Thursday, October 13, 2016

Flaring and weather


I am in a great deal of pain. My ankles hurt, the bottom of me feet, my knees, my hips, my back, my butt muscles.  My neck, my shoulders, my elbows. In other words take a picture of me and circle it, that is where the pain is. I would call it a flare, but I can't. It had been high for months. Just getting a little worse due to the cold weather. So I had a baseline of around a 6 and now I am in about a 7. It is hard to move, get comfortable, ever, any position. Have to flip constantly, sit up, lay down, turn over, it up. It is relentless pain. Unable to rest without the pain starting and then getting worse and worse and worse until you have to move into another position...and repeat.
Why is my baseline higher than usual? I have no idea. Sometimes it happens where pain just gets worse for a few years. Just happens. All I know is tramadol does nothing for it.
Why is it worse than my baseline lately? Well that I think we have to look at the weather.
Here is a good study to look at and the commentary
And then there is this:
The study found no association between weather changes and fibromyalgia pain on the same or the next day.
Further the onset or severity of pain does not predict weather changes on either the same or the next day.
The study also found that patients who had been diagnosed with fibromyalgia for less than 10 years had significantly greater weather sensitivity for pain.
Furthermore presence of anxiety and depression lead to an increased reporting of weather sensitive pain.
One the other side things that affect us in the winter are things like:
Rapid changes in temperature going Down- then air pressure decreases. Leading to the soft tissues and fluids around the body's joints to expand
Lack of sunlight can affect comorbid depression
Lack of sleep can affect mood, and fatigue and pain.

But maybe we scientifically have no link between FM and the weather. We do have temperature allodynia. And other forms of Allodynia. Point is the winter can be painful if we are not dressed appropriately. Our depressed moods from the darkness can make use feel worse physically. And we may lack sleep which can affect mood, pain and fatigue. So not weather per sa but associated with. 
Maybe we are just flaring more in the winter. And that is that. Maybe the flares last longer in the winter. Maybe it is the stiffness of the joints. Maybe the lack of exercise. My psychologist says pretty much everyone with chronic pain says it is worse in the winter. 
But a correlation between worsening weather and FM, studies have not shown it. The fact my pain is getting quite up there even with my tramadol and we have a snow fall warning for the area as the temperatures drop? Coincidence? Or not?
I should track my pain all year and see if winter is actually worse than any other time of year. I know this last couple of years my pain has been quite a bit worse but I don't know if it is seasonal. I have not tracked FM like I have migraines, which definitely get worse in certain seasons.

Monday, October 10, 2016

Fatigue and Fibromyalgia

Persistent and chronic fatigue is one of the most common symptoms of fibromyalgia, second only to the deep muscle pain and body aches. But unlike normal fatigue, the feelings of fatigue, weakness, and exhaustion that come with fibromyalgia can often lead to unending social isolation, even depression.
Fatigue with fibromyalgia is described as crippling, exhausting, and flu-like. You may experience fatigue on arising, even after hours of bed rest. And many people with fibromyalgia have disturbances in deep-level or restful sleep, so the fatigue they feel is not easy to treat.
The fatigue with fibromyalgia syndrome (FMS) often coincides with mood disturbances, anxiety, or depression. People with fibromyalgia may describe their sleep as unrefreshing or light. Some people with fibromyalgia have pain and achiness around the joints in the neck,shoulder, back, and hips. This makes it even more difficult to sleep and worsens their daytime feelings of sleepiness and fatigue.
I have been having an immense problem with fatigue for some time now. It is insane how bad it is. Like dragging your body around when it doesn't want to move and just wants to sleep. It is horrible in the morning, but it doesn't really improve much. Sometimes on my way to work I have almost fallen asleep. With long blinks and grogginess. Sometimes that lasts all day. And nap attacks all the time. But the weight of the fatigue makes it hard to think or do anything at all. It is so exhausting to just move. You can't rest though, because laying down for a nap, well that hurts... laying down for any period of time hurts the ankles, knees, hips and shoulders. But I want to. I want to just rest. 
Results of qualitative studies provide insights into the encumbrance that fatigue inflicts on patients with fibromyalgia and the concomitant problem of articulating to their doctors what is wrong. Patients with fibromyalgia describe fatigue as 'an inescapable or overwhelming feeling of profound physical tiredness’, 'weakness in the muscles’, 'an uncontrollable, unpredictable constant state of never being rested’, 'a ghastly sensation of being totally drained of every fiber of energy’, 'not proportional to effort exerted’, 'not relieved by rest’, 'having to do things more slowly’, and 'an invisible foe that creeps upon them unannounced and without warning’ [81819]. Patients also report that fatigue is interwoven, influenced, and intensified by pain, and is sometimes more severe than pain [18]. Although fatigue is reported by both men and women with fibromyalgia, one study demonstrated that men had less fatigue compared to women and a second study reported that men tend to focus more on pain and women on fatigue [820]Beyond pain in fibromyalgia: insights into the symptom of fatigue
Basic tips for fatigue are:
  • Planning rest times- because we literally need to build up energy to do anything.
  • Change routines- to fit your fatigue, if you can in fact do this. So plan down times. Plan rest times. Plan recover times. Pacing in the extreme, people, pacing, pacing, pacing.
  • Exercise- is a big one. Not major exercise. Mild exercise. Whatever you can literally manage. Start real slow. Like a ten minute walk sort of exercise. But it can be stimulating. 
  • Short naps- like power naps. Not late in the day. 90 minutes being the longest because that is a sleep cycle. 
  • Sleep hygiene- well we have serious issues with sleep as is, so always a go idea to have good sleep hygiene.
  • Stress reduction- I think this is always on the list and likely because the fatigue is caused by a lot of other factors including pain, so reducing stress can sometimes help manage our other symptoms.

Personally I am increasing my B12 and starting Rhodiola supplement wise, hoping for Some sort of boost. 

Saturday, October 8, 2016

Dear Dr: The doctor who changed my life

Medical physician doctor hands. Healthcare background banner.
Dear Dr: The doctor who changed my life
So I have had a lot of bad doctors in my life. Man I could tell you some stories, my friends. I have also had mediocre doctors and disinterested doctors, who simply were fine for refills of medications but not much else. A good doctor is hard to find. Around here where there is a doctor shortage a good doctor is near impossible to find, because people know it and they are patient heavy and not taking patients on. 
My current doctor though, she is special. I found her because I had a very disinterested doctor who didn't seem all that interested in how I was actually doing. Not willing to do any more than necessary even when things got worse. So I looked, and found no one was available to take on patients. But, then I thought about my spouses doctor who had been managing his Gastroparesis. Who in fact got him diagnosed with it and sent him to the specialist to get treated for it. The one who sent him for a MRI to check on it, just to see what was going on, and caught his kidney cancer in stage 1. The one who could handle my very quiet spouse who does Not like going to the doctor. Ever. I knew she wasn't taking patients but I called to ask since it would be under 'family' and sometimes doctors who are full of patients will take you on if you are related to another patient. So that is what I did, and I got in with her.
Right off the top she did a thorough case history and she was the only one that said, hey, those chronic migraines and fibromyalgia are not playing nice together and you need to go to a pain clinic. I had of course heard about pain clinics, but I had never been referred to one. And that has made a lot of difference. They have put me on painkillers, which sort of help with FM. They had a pain 101 class with other people with pain that was very enlightening. I will be getting botox there for the chronic migraines, even though I get since I was non-responsive the first go around it may not do a thing this go around. I see their psychologist there. Their psychiatrist is the one that pretty much said I am highly sensitive to anti-depressants and cannot be on them, due to the worsening depression and suicidal ideation and put me on Abilify. They are the ones that flat out told me I could not work full-time and I was exceeding my pain limits too much to even do so. That I needed to come to terms with that and understand I had limitations. Although, now it seems I cannot even function part-time. 
The one thing I really like about her is that she is exceptionally thorough. She was the only one that sent me for a bunch of tests to ensure I actually had IBS rather than another digestive disease. She is currently investigating my persistent nausea/vomiting, which could very well be migraine related but it is a concern I am losing weight so she has sent me for tests for that as well. 
She asks and cares about my mental health which has been an issue for me for some time. My previous doctor, after my first suicide attempt, said it was an excessive response to pain put me on a short term leave 'due to stress' and then pretty much wanted me back to work. And I felt... very hopeless at that time. It would have been nice had someone had my back and understood that I was really struggling. And still am. So having a doctor who asks about this is important. You don't ask and I will likely not mention. Just the way I am. I hide my depression and I hide it well. 
She understands the impact the pain is having on me. And the depression due to the pain. Mostly because she listens to what I say and how I say it. Communication is very important between patient and doctor. And hard to find. 

Thursday, October 6, 2016

I am not a failure

I was struggling to work. I was failing. This was making be feel worthless. A failure. And depressed. You work So damn hard to do something and you cannot function at your job, cannot concentrate, you are so fatigued mentally and physically, trying to think through the pain… that your performance seriously suffers. Then you miss work when the pain is mind-blowing level, unable to drive, unable to think, unable to move. And then you feel that profound guilt. And how much you suck.
So you go on disability, or I am trying to anyway, because my emotional stability is taking a turn down. I don’t do well when I struggle to do something I just can’t and fail. I keep pushing and fail anyway. And it crushes me. And I feel my only way out is death in the end. I wanted to not get to that point this time.
But you have these feelings like you are a failure. It is your weakness that led to all this. If you could just Push through the Pain more. And ignore those depressive thoughts. And come to work in high pain anyway. Just suffer and do it. But of course productivity would take a nose dive then. Considering the errors I made on the days they called me in anyway.
My psychologist says we have to separate ourselves from our pain. As in I am not the failure. He asked me to say something more realistic. So I said ‘My body is failing me‘ To which we laughed. He said it was more realistic to say that I tried my damnedest. I want to work. I want to have a career. Financial stability. But I just cannot because it is beyond my capacity and limits. Not that I am personally a failure, it is just beyond my pain limitations.
It made me feel better when he said it. It did. I understand it is the limitations of my body making it impossible to work. He wants me to think of the next step. How to manage my day. Ensure my depression is managed. My sleep cycle. And I replace work with something that interests me. I on the other had am thinking about the step before which is my appeal to insurance company for long term disability. I don’t understand what they believe disabled is if it isn’t FM, chronic intractable migraines and depression. But it was difficult last time. And they may deny me. The places my brain goes when I think about that are not pleasant. Can’t go on disability and can’t work? What would any depressed person think in that scenario? But I am telling myself I don’t know yet. I don’t know how it will play out. I just have to try to manage my emotions as best I can and let my doctor fight for me. And I will write my letter, which I doubt means anything to them but at least makes me feel like I can explain a little on what it feels like to me. I will try and be precise with the symptoms and impact.
Maybe it isn’t my fault. But I still feel horrible about it. It is like setting someone up for failure by placing them in a no win situation but telling them ‘they are perfectly capable of doing it’. And when they fail, of course they feel like a failure. Do that enough and of course your self-worth suffers.
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