The hard truth about pain

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Those of us with chronic pain on the outside look fine. People will call us lazy because we do not look disabled. They will think we are scamming this system. That we don't 'look sick enough'. That we are smiling so we 'can't be in that much pain.' Didn't we take that smiling selfie and put it on Facebook... since Facebook reveals a true reflection of our real lives then clearly we were happy and not in pain, right? Of course not. Pictures are tiny moments of happiness or they are moments where we find the need to smile to be socially acceptable. Where we are masking our pain the hardest. 

First hard truth about pain- They will doubt you. They will always doubt you. How much pain you are in. If you are in pain. Your pain number when you say it. How bad you really hurt. You have learned to mask you pain. They need pain behaviors to believe pain. But let's be honest even if you didn't mask your pain then you'd be exaggerating and complaining... so there is no winning on this front. There is stigma to the left of you, stigma to the right and you are caught in the middle. Fact is you will have to prove it over and over and over again to so many people for years and years. They will ignore the impact it has had on you. Ignore pretty much everything. You will have no power over what they believe or do not believe, but they will have a lot of power over decisions in your life such as disability and insurance and doctor care.

Second hard truth about pain- This is not an easy life. Pain that never goes away is mentally, physically and emotionally exhausting. It stresses the body and makes a person insanely fatigued. It affects the brain; concentration and memory. You often feel in a pain haze where it is hard to remember the details of anything. It takes a great deal of strength and determination to continue day after day knowing the pain will be there day after day. The impact of chronic pain is continuous as well. And that impact can dramatically affect our lives. Such that it seems like we don't even recognize the life we wanted to what we are left with. What we are left with seems narrow, confining and limited. And somewhere in there we have to Try to find a way to live some sort of life with some sort of quality of life with the pain. And we can fail at this, as sometimes the pain is far too high for a proper quality of life or to have much of a life to live in there. But that is the aim. And that is not an easy life.

The third hard truth about pain-There is no magic pill. There are a lot of things we can do. A lot of medications. A lot of alternative treatments... out of pocket. Lots of things to try. None of them will eradicate the pain, but some will help. That is the hard truth, there will be pain regardless but there can be less. You just have to find your formula as it were. 

The fourth hard truth about pain- most of us will be susceptible to depression and anxiety. We have a high risk of suicidal ideation and a high risk of suicidal actions. Just the thoughts though occur to many of us. Because at some point the pain gets to us and we will wonder if continuing to fight it is worth it. For most of us, they are just thoughts. For some of us they can turn to plans and then actions. And for some of us we can develop depression and anxiety. One hard truth is that we can have suicidal ideation and even suicidal intent without depression, but from the pain alone. It is an important risk factor to be aware of.

The fifth truth about pain- there is an obvious shift in society where they are not considered about pain patients. They are concerned about addicts. By reducing pain medications pain patients suffer because no thought at all was put into consideration of what was to replace those medications such as proper and complex chronic pain management. No consideration given that some of those patients actually needed those medications. The media slanted the argument. Everyone's opinions have been slanted. Opiates bad. Everyone who uses them... gets addicted. It has been completely warped without a shred of decency paid to facts. So the future of pain management looks grim indeed. With nothing and a side of nothing for pain management.

Relentless nausea #MigraineImpact

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When I was younger I would get severe nausea with my migraines. I would throw up until I couldn't throw up anymore. It was pretty severe to the point they put me on a triptan (abortive med) that dissolved in the mouth rather than a pill because the pill never lasted in my stomach long enough to work.
That symptom seemed to diminish for some time into periodic nausea and vomiting. To which I was grateful, but was replaced with bouts of diarrhea which I was Not grateful. Had to hit somewhere digestive wise apparently. No winning.
Then about a year and a half ago the nausea returned. And it didn't go away. At all. Ever. Constant relentless nausea. Some vomiting, but I loath this so mostly gagging and trying to prevent myself from tossing my cookies and sometimes losing. But nausea so severe I had no appetite and had a hard time eating. And lost thirty pounds. I was put on zofran 4 mgs. Then 8 mgs. And I eat it like candy. But it doesn't do much to be honest. Migraine nausea when migraines are daily is a brutal affair.
There are other things to try:
  • peppermint tea
  • ginger tea, pills, just ginger
  • motion sickness pills
  • sipping water, tea
  • blander than bland meals... the odor you see gets to us.
Basically I do all of the above and my zofran and barely manage it. Thus the weight loss. I mean food is so not appealing to me now. Keeping it down is a struggle. But I eat a little and immediately regret that choice. It is a necessity, but not a joy at this point.
I don't think people truly get how horrible migraine related nausea can truly be. I am currently trying to get on leave from work but at work I would throw up three times a day... and I am not the sort of person that does that and looks fine after. I cry when I get sick. And get all blotchy red. It isn't pretty. Not to mention I want to brush my teeth and can't. Then spend the rest of the time trying desperately Not to be sick with that constant rolling sensation, dizzy spells and vertigo. When you are driving sometimes you have to pull over to be sick. Sometimes if you are lucky you make it home just in time to get sick. Yay! Sometimes when you wake up mid migraine you are so sick you do the throw up and can't stop deal and don't make it into work on time... or get the throwing up and diarrhea deal and definitely don't make it into work. That is a migraine hellish combo that can make you drained, dizzy and shaky so you need to take electrolytes or you'll just pass right out.
I want to enjoy food again so bad. I want to just enjoy what I eat again. I want an appetite. I have cake in the fridge right now but the nausea is very intense today and no way can I tolerate sugar. But I want to enjoy some cake.
Just one symptom can cause such havoc. I have been drinking Ensure to get some actual nutrition into me. One of many symptoms. 

What I do well: Hermiting

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I used this image because it is a great mantra to get some stress out and I have been stressed. I also have been in a substantial amount of pain due to FM flaring and daily migraines. 
And I am in Hermit Mode. 
It happens when I am in a lot of pain and also depressed. I sort of just hermit. And I hermit well. It is difficult to leave the house when that involves increasing my pain. When it involves exposing my sensitized senses to sensory overload. 
Friends invite me out and I pass. I was working recently and that was my excuse to be honest. Too much pain to go out and have to work the next day. Need to get the pain down so I can hopefully get some sleep to manage the pain the next day. So I kept declining. I went recently because I felt obliged to a friend who moved here recently... and I was so nauseated. I tried to have fun but felt so fake doing it. I had dulled the pain with a triptan but that gave me a 2 hour window before it returned. I did have fun in that window, just felt horrible and wasn't myself. I would have preferred to skip it. 
It isn't bad to hermit a bit. Sometimes it can help get a grip on the depression. Sometimes depression just needs some alone time and a plan. A plan I don't have but will. 
Sometimes the pain is a bit much and hermiting is the best way to get a grip on it with a new angle on how to cope with it. Because we can't get rid of it. It is going to be there day after day. We just need to cope with it. 
But you can never get into it too much. Give it a week or two. Then force yourself out to run an errand. Start going for a short walk at twilight if you are sun adverse as me. Go for coffee with a friend. Force yourself to get out and about. Because too much hermitting leads to isolation and can make depression worse. God knows, depression makes it easy to fall into for sure. 

Found me a troll today on my page

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I always wonder why people who discriminate against disabled people seek out groups like that one Facebook to spit their hate. Seek it out. Can't keep their vile to themselves. However, they do distress people. I find them particularly funny and easy to rile up. But they need to be rid of quickly because they will and do start to insult people and that is uncalled for. No one deserves a personal attack from some random hateful little prat. Anyway, I will use him as a prime example of some stigma we still face because clearly it is still quite alive.
He said on an image that said 'Pain doesn't go away, you just make room for it'...Get off your phat ass an live with it, just like everyone else!
On an article about depression... There you have it, it's psychological. Now go see a good therapist and get back to work, you shirking POS.
On an image that said 'My pain is invisible but I am not': cry me an 'effin river you whiney douchebag.
On image that said 'stuck between Hell and Hope.' : You want to know what hell is? It's listening to you vapid brainless bloggers run on about your "pain" and every little ache you have. Don't eat like a pig, eat healthily, do some freakin' exercises, and then get a job and pay back this country for all the down-time you've gotten and sucking off the workmen's compensation, SSI and SSDI funding. Parasites!
I responded to that last one: Illness comes to us all. You'll figure it out someday. And when that day comes no one will pity you. Not to mention you have no idea what we do for our health; we actually have quite a few things including diet, exercise, physio and more we have to do ,minimum, in addition to medications. Only a moron thinks chronically ill do nothing to maintain and improve their health. The fact you came here to say that makes me think you are a very sad, little, pathetic man.

Women with Invisible disabilities and work

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The Working Mother research included case studies of women with such disabilities as Asperger’s and fibromyalgia. What distinguishes this group of disabled workers area, among other characteristics, the following:
  • They tend not to report their disability to management.
  • When they do report it, they often do not receive any accommodation.
  • They are less satisfied on the job than those with visible disabilities.
Nearly 1 in 4 who requested a flexible work schedule to accommodate their disability did not get one, compared to fewer than 3 in 10 of those with a visible disability who made the same request.
As with all disabilities, disabled women statistically fare worse at work than do men. And those with nonvisible disabilities fare even worse. Men are more likely to ask for and receive accommodation for a nonvisible disability, they face less “prejudice” during the recruitment phase, they advance in their careers faster, and they are paid more.
“Indeed, when we look at the workplace supports people with disabilities want versus what they get, we find women have ‘satisfaction gaps’ that are three-fold larger than men. In particular, women are significantly less likely to say their compensation is fair, their opinion counts, their coworkers respect them, and/or their supervisor supports them in work life balance,” the researchers write.Study: Women with invisible disabilities suffer more at work
I find these results hardly surprising. The first place I offered accommodation to my hours flat out denied me. The second place I offered several ways to accommodate me and they said 'I didn't have disabilities according to the company'... in other words no visible. However, their HR talked all about invisible disabilities and all about ways to accommodate. They also never did a workplace evaluation of my office. Promised to after working their 9 years but then canceled it.
Same company, different manager and I received one form of accommodation. A job demotion to accommodation my request for lesser hours. I could not work the full-time hours according to my pain clinic, psychologist and doctor.
As for job satisfaction that second place was a nightmare for me. The sicker I got the worse my work environment got. The worse I was made to feel for being ill. The guiltier I felt and the more stressed I became. I was demoted and promoted, and demoted and promoted. I was the lowest paid worker in my profession given the years I was there and my performance. While I, well I became suicidal.

Between hope and hell

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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. 

MRI brain scans show FM 'brain signature'

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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

I own my pain

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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.

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?

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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  http://www.surveyophthalmol.com/article/S0039-6257(15)30007-2/abstract
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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. 
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Flaring and weather

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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.

Fatigue and Fibromyalgia

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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.
WebMD
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. 

Dear Dr: The doctor who changed my life

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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. 

I am not a failure

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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.

Mental Illness awareness week

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Believe it or not I try to be rather hopeful when I express things on this blog. It is my better self. It is my desire and wants and needs expressed in words. But you know I struggle. I do mention that. The pain. Fatigue. Cognitive impairments. With work. And with depression.
Depression is something that has haunted me since I really manifested fibromyaliga. Whenever I really have to cope with the impact of pain it rears its head. So when i was younger I went through a pretty bad bout of it when it came to coping with FM. And it seemed to diminish. Only to raise up again with chronic daily migraines. And it hasn't subsided since, since neither has the pain or my struggles to cope with this additional pain.
When I am optimistic this is what I think to do about depression: Things to consider for depression
And this is the reasons I hid my depression for as long as I did, for really, as long as I possibly could: 6 reasons I masked my depression for years
Two suicide attempts in I can hardly deny it to anyone, least of all myself. I am on Abilify now which takes away my sudden abrupt plummets in mood that generally lead to suicidal intent. Yet there is still suicidal ideation. Still thoughts of worthlessness. Still hopelessness. Still this idea everything would be resolved neatly with my demise. Still this overwhelming feeling I get sometimes when I think I just can't handle things like working. All the pain and suffering it causes. It gives me anxiety in the morning just knowing about the pain I will endure. Never had anxiety until now and I do not enjoy the experience. 
The fatigue is something rarely talked about. We talk about the sadness. The numbness. The disinterest in things we enjoyed. The isolation and distance we feel. The thoughts and longing for death. But this immense fatigue that grips you isn't much talked about. Like your body weighs a ton and it takes too much effort to move. I already have fatigue from chronic migraines and FM and this addition is profound. I feel so tired all the time. I have to crash every day on the couch from just... existing. I am exhausted every moment of the day.
The lack of motivation is another. Because of the fatigue and the disinterest in activities there is this lack of drive to do things and this lack of pleasure in having done them. Like the reward is gone, whatever reward is gained from doing said activity well is poofed out. It is do it, because you should, because you must. And you just lack the energy to do it so you procrastinate, push it off, sleep instead.
It isn't fair that I feel cognitively not there was well. I have cognitive issues with migraines and FM... I hardly need this foggy mental fatigue settling in as well. 
Then you wonder, what does it matter? Nothing really matters anymore. 
But I have good days and bad days. Bad weeks and good weeks. On good weeks I just think I can get through the other side by doing the work and seeing my psychologist, and staying on my med obviously. On bad weeks the physical pain drives me to distraction pushing my depression more and more and I have to fight my brain every damn day. 
Pain is the most tangible part of my reality. It is as real to me as my five senses. There at every moment of existence. There to be though through, around, over... but always a distinct presence. And how can one not suffer from that? How can one not want to suffer less? And how can my mind not by twisted by it? The pain is more real to me than people telling me it might end one day. I have no concept of what that means. Tell me I will suffer less. Tell me I can do that and I will want to believe you. But don't tell me something my reality doesn't even understand.
And on a good day I believe I can decrease my suffering. And on a bad day I believe it is hopeless and always has been because society doesn't care about my suffering. And never will. On a good day I believe if I suffer less I can cope better. On a bad day I believe people just want me to pretend I am suffering less so they can force me to endure the pain more. Be more 'functional'. And on bad days I think they are so blind to suffering they simply do not care and will try to force me to be functional. As it always is. And I get hopeless. And suicidal intent is my depressions answer to being forced to being functional.
I am in a pattern on repeat and I know how to stop it and manage my depression and pain better, but it requires other people. Other people that understand I cannot work. Otherwise this pattern of going on leave, returning to work, being non-functional, getting severely stressed by the pain, and then depressed with the failure to manage the pain and work and then the depression becoming severe and dangerous... with repeat, until it doesn't. I am depressed and I am in pain, you add in work and I cannot manage either. It increases suffering and pain exponentially. Until i mentally just give up. Each time I push myself to succeed, each time I fail and each time I feel worse as a person. I know what I need but... life isn't about what you need, it is about what others think you need and about their bottom line and about sufficient evidence.
I am glad I am on the Abilify. I fear what the case would be without it. Work has been difficult lately to say the least. But I am appealing my long term leave. And I hope people will understand mental illness is a significant factor in chronic illness and managing chronic pain. Untreated pain is dangerous all by itself, add in depression and that is some significant risk factors there. 
And I am not ashamed to say I have a mental illness now. Not when I am here and I could easily not have been here. Depression is a thought away from one action that can't be taken back. And it isn't to say I don't fight this and treat this and do all I can about living with this illness. Because I do. However, I struggle a lot sometimes. And this is one of those sometimes. I hold on for as long as I can when I am working but the pain gets the best of me and the depression gets out of control. It peaks. I admit it at least, this time and that is at least a step in the right direction.

In limbo



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I am in a limbo of pain and depression. This place where I want to lay down and just not. Just Not. Every feel like you want to sleep for a thousand years? Yes. Or just not exist. Or aware you exist. Just want it to stop spinning… stop thinking. Stop doing.
I am in a funk still with the pain and the depression. I am stressed. And I think I need to go on a leave from work soon. Just don’t know if my spouse wants that. But it has to be soon. I keep tearing up unexpectedly when I think about the pain or about work. I keep getting surges of sadness and despair. Hopelessness. I feel like he doesn’t want me to go on a leave. It is making me distraught with me choices. I feel unstable.
I am tired of fighting and yet I will have to fight the insurance company. Go though all that hell again.Feels so useless with the way they look at my disability.
It would be nice if I could just Be for a bit. Just be in pain and rest. Without having to work. Without any stresses. Just be. Then maybe I could get a handle on these overly sensitive emotions I am having. This despair and hopelessness.


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