sibelium update: The #fatigue but far less #vertigo

Fatigue side effect and fatigue symptom together? Immovable object vs. unstoppable force complex.

I have a lot of tricks to try and help with fatigue. Both physical and mental fatigue. But when it comes to adding in that fatigue that comes from a symptom, in this case from a calcium channel blocker sibelium, damn, it is like you just added lead into my blood. And while it isn't a cure for insomnia... what is, right? It is a cure for getting Up. Normally I sleep at most five hours (In bed for 8) before it becomes a futile effort. Now? I struggle to get up at ten. With an alarm clock. Not even sure how I keep hitting snooze for Two Hours without Being Aware of it. But I do. That is some thick grogginess there.

I'm thinking of doing some gentle stretches I say online to help get the blood flowing before I get out of bed. Maybe that will 'shake' some of that infernal grogginess.

But you know sleep isn't exactly a bad thing. I wake up without a migraine most of the time. But sleep isn't guaranteed either. I have to get to sleep in order to have this not waking up effect and wicked acute migraines at night sometimes delay sleep a great deal and pain levels of any sort in high intensity can delay it altogether. So getting ten hours (in bed, not actual sleep. Not sure the actual sleep time but it is obviously more than my five) is not a bad thing in the scheme of things. It just makes me feel like my day is wasted. Even though I noticed the sleep itself helps delay my migraine onset. So on these days I wake with no migraine and the migraine does not hit until the evening. That is pretty nice. Whereas less sleep wake with a pre-headache and migraine onset within a few hours of waking. Sort of sucks. But better than it would be without a sleeping pill... migraine before or at waking. Really sucks. And this insane fatigue has enabled me to start adjusting my sleep cycle. I have been meaning to start going to bed a little earlier each night... it just has not worked. Pain makes my sleep too erratic to make it a habit. Yet for the last week I have so far gone to bed an hour earlier consistently than my norm. And I hope to drop it back another hour within the month. Partly this is the fatigue and partly some additions of nice mellow tunes at night, some relaxation breathing and some sleepy time tea. No idea how much those are helping, but I think they are having some sort of effect all combined together.

So sleepy good for sleepy time. Not so good when I wake up later than I want to and still feel so drained I can't seem to do anything. It isn't a 'zombie' drug. Thankfully. But you constantly feel sluggish, lethargic, like an eminent nap attack is about to hit but you Don't want to nap and like working up the motivation to do anything is way beyond comprehension. Unfortunately one way to combat fatigue is Doing things... but it doesn't work when it is a side effect. You still feel exhausted and sluggish. Like, well i did one thing, time for a sit down. Phew. Tired.

So I think I need to get my blood flowing. Exercise is an excellent way to combat fatigue; both mental and physical. But not when the side effect also includes dizziness. I suspect it is lowering my blood pressure a smidgen, but likely not too much, or I would feel significantly worse. Not like a beta blocker would do to me. However, I do have black spots in my eyes and get dizzy spells and feel utterly drained from... standing.

Yet from my experience once you get 'used' to these meds this side effect diminishes and I think it will help if I force myself to do small bouts of exercise each day.

Now I was put on this migraine preventative to see if it would help with the migraine associated vertigo (vestibular migraines). And indeed I had been in this month and a half long daily vertigo bout at the time I had started the medication. In fact, wasn't sure it was going to End. Started with a severe drop attack, as in, floor, gone. And then persisted for the first few weeks with severe drop attack vertigo... so floor constantly very unstable, then, poof, gone. Then for the remainder it was moderate to mild fluctuating of the ground just mooshy and dipping all the time. And being on this medication once at the full dosage has stopped it completely. No drop attacks at all. No moosh ground. Some internal vertigo, but that is sort of expected given the drug is causing dizziness on its own. I noticed some balance issues today with internal vertigo on the car ride to the city, so perhaps the internal vertigo still being triggered. But if so, that is still much more manageable. Really so far it seems quite effective for lowering the intensity, duration and frequency of the vertigo attacks. Also I have seem some decrease in migraine intensity, but that might be from all the sleep I have been getting. No complaints mind you.

So the plan from here is to see the neuro again come March and I believe to go to his pain rehabilitation center for some uber exercise. Sounds painful, yes, but sounds like a fine plan to me. Didn't with the vertigo... as that would be a lot of falling on my part, but since I have had some success with the sibelium we can totally bring on the burn.

Just can't escape those triptan side effects

In this case I intentionally didn't avoid them. I full on engaged them. My doctor wants me to get an EKG at the hospital for triptan side effects and I have been really procrastinating on it. So one wicked migraine and some perfect timing I figured this would be the time to go right ahead and take medication like one would with a wicked migraine.

I took a triptan yesterday and then thought if the migraine was still around this morning... I would take another. Now, keep in mind, if I were to take as directed I could in fact take three a day if the mood struck me. But the side effects are brutal so I never take more than one a day or two days in a row. Otherwise the side effects seem to compound. Just has led to some really freaky stuff that I would rather avoid. Because it isn't like I rush off to the ER when freaky things occur. Nope. Not me. I go, oh, bad chest pains... I'll wait and see if I die, if I do... it was bad, if I don't... then it's all good. Clearly, so far, all good. Wake up not breathing and gasping for air? Unpleasant. Yes, unpleasant indeed. So, don't go back to sleep, because that might lead to death or something. I don't know. There is just freaky things that occur even on the milder end. Like heart rhythm issues and heart rate issues, which I thought were rather mild concerns but rather disturbed my doctor when I explained them in the course of explaining something else entirely. So apparently those are not to be ignored either. And here I was ignoring the chest pains and issues with breathing. Apparently I am way more advanced at the ignoring side effects than I should be then. Don't blame me for that though. Blame doctors. I have been taken off triptans before, for breathing problems and angina. No one ever said anything about the other stuff being problematic. Literally no one said those were anything I should be concerned about in the least bit. I thought pretty much a normal occurrence but that I must be on the upper range of side effects related to them. And to be honest some doctors said for the breathing issues I should just 'take more asthma medication' or 'triptans don't aggravate asthma' (well they do cause side effects that resemble those symptoms dumbass). So sometimes I am taken off one and put on another and sometimes there is no change at all. And that is why I made my own very specific rules. To reduce occurrences that even freak me out, which is rather hard to do. But even the best of times tripans do not make me feel good. I try to time taking them so I can rest. I used to wait at work to take them at lunch... I know you should take them 'right away' but doing so could cause unpleasantness. Like chest pains and wow I can't seem to catch my breath to talk to this customer. And what the hell is my heart even doing right now? I needed to rest a good hour to dampen the effect. Sometimes take my inhaler. never rush around. I always felt so damn short of breath. Like the air was sucked out of my lungs.

But my 'don't want to make a fuss' rules of ignoring symptoms really is not a good idea because those symptoms are not good really. I don't know what it means to be honest. My doctor thinks I am just sensitive to them. Maybe she is right. I think maybe allergic to them in some way given the breathing issues.

Either way she is concerned about the heart arrhythmia it seems. The heart flippy thing and skipped beats and palpitations that never really concerned me at all. I knew they were not great but I have indeed experienced worse in my lifetime. Prior to being diagnosed with hypothyroidism my heart beat did some things that were so disturbing I was scared to move. I would have gone to the ER for sure had I not been terrified movement might actually cause my heart to do something worse than it was. It was that erratic. So what it does on triptans, while, yes it skips and causes that hitch in my breathing and flip flops that I can feel in my chest... it isn't going so erratic I am terrified to Move. The really fast or really slow thing I think happens frequently to people on triptans, and with migraines. I think we get a weird POTs like thing going on. So while that isn't great either, especially when your heart is pounding so damn hard you cannot sleep, I don't think that is particularly harmful. Nor do I think there is anything wrong with my heart at all. Just like there wasn't when my thyroid was out of whack. I think I cannot breath so great when I take a triptan and that doesn't do wonders for one's heart rate. That is what I think. Plain and simple. And the more not breathing so great I do the less great my heart does during the day, which then leads to palpitations later and sometimes chest pains.

Because taking a triptan is like being punched in the chest. It cuts my breathing quality down in half. That is why I say it resembles asthma like symptoms. Because I have to 'breath more'. It takes effort. There is immediately shortness of breath, sometimes raspy, sometimes I cough, sometimes I wheeze, but always a shortness of breath. And a heaviness in the lungs that lingers through the day. Sometimes I will catch myself breathing more heavily because I feel like I am not getting enough air, and of course this causes my heart to jack up. Either way, the reason I often go to sleep with an acute migraine is because I Never, ever take a triptan anywhere near bed time. The decrease in breathing without, say, taking my inhaler or more asthma medication can cause breathing issues while I am sleeping. And waking up with no air in my lungs... not suffocating, more like I let out all the air, have no air, and am having trouble taking a breath back In. And also waking up with something similar to an asthma attack, even though I have never had an asthma attack with the asthma I have. Lets just say, you don't want compromised breathing when you are lying down and sleeping I guess is the idea there.

Let's just say I am symptomatic and leave it at that. But if I am careful I can keep the symptoms fairly tolerable. At least my level of tolerable, which apparently is not what it should be. I thought if I quit smoking I would be off my asthma medication. It has become clear to me if I remain on triptans... that is not the case at all. But I doubt very much that is the treatment for whatever side effect this is. The inhaler does help and so I suspect the Symbicort at night does to. But necessary? No. Not at all. I want to be off that medication.

Anyway. I took the Maxalt two days in a row knowing full well how crappy I would feel. Maybe I forgot just how crappy. Quite crappy it turns out. Just so that I would be able to go to the hospital and get the EKG my doctor wants to 'catch' the erratic heart thingy. Because usually I don't have a migraine in the morning and I take the triptan in the afternoon. I thing the first little heart flippies are minor so I ignore them. If it gets wonky at night by then my spouse is tired and the lab at the hospital is closed. If it gets even worse and I think this would be a prime time to clock this fast heart rate and hard beat... well my car is blocked in and I can't get out to drive myself by then. So I have procrastinated. The last time I saw my doctor she specifically said 'any heart irregularity' so including the first heart flippies and skips. So I timed it so I would be able to drive myself. But had to wait till the med kicked in, migraine quit, then rushed to get there... doubt the very, very brief test caught anything. And now, I feel extremely cruddy for a test that literally lasted two seconds. Feel like a damn elephant is sitting on my chest. And a dry cough that will not quit. My chest Aches. Yeah, that was so not bloody well worth it.

It is a standing order though. Can do this anytime I want. Joy. Not. But if they do not catch anything my doc said they might do they send home version. You know... I think all they need to do is have me at the hospital, take the triptan, and test my breathing quality and have me hooked up to a heart monitor for a few hours. Done. The breathing test Alone and it will be a done deal. That is if they cannot take my bloody word for it and all. Or, just let me keep taking them, as they have for years. I have not died yet and clearly alternative medications are way too taboo. However my current doctor is far too good to risk having me on a medication that could be... not too great for the health as it were. She isn't going to ignore me. She in fact suggested I really, really not take my triptan often. But that makes it hard to get this damn test done. And treat the migraines. But she isn't like any other doctor either, who would just switch me to another triptan. And I am running out of triptans to try here. So the fact she is trying to figure this out shows how good she is. I like to think it is something random that can be fixed that has nothing to do with the triptans. It is why I mentioned it to begin with. I wondered out loud to her if my side effects were something to do with my erratic blood pressure or migraine related POTs... something like that. She asked for more details and that is how I find myself in this situation. As I said, she thinks it is possible I am just really sensitive to them. I think she is doing her due diligence here. Either way she is looking at the heart, but I am positive it is the lungs. I am positive the smack to the lungs causes all the heart wonkiness. And in fact the very first 'reaction' I had to a triptan was a breathing related one. I did have skipped beats as well, but when you get the shortness of breath and that heaviness to the lungs, that happens. And there has not been a triptan since I have not had that reaction to.

So yeah I can go anytime I please to get it done again. Given this is the only time since she gave me this in the last three month I can see that not happening anytime soon. Have to wait for a morning migraine for one. So I can drive myself and I still think all the rushing around makes it moot.

the stuff I take and being irked at 'judgy' people

I got a little irate from something I read recently about people judging others about what they do for their health. And these are chronically ill people. And it bothered me a great deal. We are all in the same boat they should understand the difficulties in all the problems with all the changes we have to make that might help. The difficulties with lifestyle choices that are by no means easy. Or the fact that sometimes we have comorbid disorders that make it even more difficult to make those changes. Or the cost involved in supplements, vitamins and alternative treatments many of us struggle with what to choose and how much of. So here is my list of what I take daily right now....

Actual prescription medications taken regularly

Lyrica (Fibromyalgia)

sibelium (Migraines)

Topamax (Migraines)

zopiclone (Sleep due to FM and complicated by pain)

Synthroid (Hypothyroidism)

Symbicort (Asthma)

Medications I take as needed

Maxalt (My main migraine triptan abortive medication)

T3s (A migraine rescue medication)

buscopan (A medication for IBS flares)

The supplements and vitamins
I know supplements have side effects and can contradict with medications. And I know a lot of vitamins either don't make a difference or don't with my digestive system. So I don't like to have Too many on my potential list. It is... expensive.

Calcium (I have lower bone density than I should, so this is a must)

Vitamin D 5000 IU (This is recommended by my doctor and neuro, so a must)

B12 (Potentially benificially for FM fatigue but as I have it on hand thought I would add it in and see since I am having an issue with that, also having an issue with 'mysterious nerve' sensations and B12 issues can be a cause of that. My B12 blood work is fine, but that isn't always a good marker, so since it does no particular harm at the amount I am taking I have adding it in till the bottle is done.)

Gingko (Helps with tinnitus, and as a perk maybe will do something for the migraines)

Ginseng (Comes combined with the Ginkgo and may help with the FM as a perk)

Butterbur 75mgs (I got a bottle for Christmas and it is one of the supplements studies have shown can help with migraines so I am giving it a go. Why not, right?)

Vitamin E (I have a lot of bottles of it... so I'll be taking it for a while. lol)

Grapeseed extract (This is a FM one, but also a asthma and eczema perk, so another two for one. Grapeseed extract and benefits to FM). And I have actually run out so I need more. You really don't need to take it with the E I think, so I usually alternate them. I prefer this one though as a supplement.

This is my basic list. I have others I take like stomach enzymes (because I have digestive issues and it helps with lactose for sure) and a vegetable supplement thing. I also have a multivitamin in mint form since I have such issues with multivitamins digestive wise... it is not packed full, but helps me quit smoking so I like them. Also have a mint version that is C and zinc for immune boost, that I also use and again great for the quitting smoking I figure as well as boost that crappy immune system. The brand has no added flavors or lactose as a binder. And a vitamin water with B's. You won't see magnesium on the list, which is a good one for migraines and FM both but I have not found one I can handle digestive wise yet; I have one version yet to try that I hope I'll be able to handle. I'm not fond of laxatives, so, so far it is not on my list. But I have a line on a specific brand that may suit my needs. And no, it is not the liquid version, apparently that also does not agree with me. Cormorbid conditions do suck in that way I suppose. Either way, the main ones have a specific purpose. If I find they do not work for it, I switch them up for something else to try.

As you can see Nutrilite is the brand of vitamins I use generally

Now in addition to meditation, relaxation, biofeedback and exercise (which I do as I can)... I think this should be a sufficient start. Now this isn't counting other things I do to help prevent or treat migraine or pain. Because there are other things. Hot and cold treatment. Topical treatments: menthol based or capsaicin based or migraine balms which are rather soothing. And more, and more and more.

It is difficult when a person has more than one illness. A lot of symptoms. A lot of side effects. Not always easy to distinguish between the two. But you know we do the best we can. So I thought I would lay out what I am taking, right now. Which isn't actually a lot since my medications were cut down a bit and I have reduced my supplements down as much as I can (Due to cost). Which can change on a moments notice by the way. Doctors, specialists and who the hell knows what else can change the plan of action. We often get judged on what we are doing. Or not doing. But we are doing, or have done, or will do... a great deal, constantly in the name of our health and wellbeing. At a lot of cost and time. A great deal more than the average person does I'll tell you that. I didn't add in diet or 'mood boosting' exercises in here because, damn, then it just gets to be an even longer post. So, it is a long, complicated story that healthy people do not want to actually hear but love to judge. Like 'drink more water'... duh. Or 'cut your hair'... wtf? Have you tried massage, acupuncture, chiropractor... you name it. And of course I have. The only thing I have never tried is migraine related surgery and neurofeedback. And I would be willing to do the neurofeedback. I don't think the surgery is quite proven enough and I think I can do more with other methods, rather than risking it. And some of it was covered, to a point. And some of it not. Currently I'm seeing a psychologist, who specializes in chronic pain, thus the biofeedback but that means anything else would be out of pocket and, well, half the year so is he. So, cost wise, all these 'extra' things are not cheap by any means. But we all do them because they are basically necessary for our health, so we do them as much as we can afford to. If we can do them a lot, awesome. If moderately, great. If not at all, then that is just the way it is.

So what do we actually deserve for all our efforts? All the little and great things we do every day? For just getting through the day? For just managing the pain and learning to cope in new ways?


This is not to say we will not learn new ways. Try new things. Cope in new ways. Change medications. Change supplements. Because we do. We must. We must change and adapt. Do you think all those chronic illnesses were there at once because trust me they were not. That took some adaptation. And they changed. And so I had to change.

I think all the effort we go through is worth something. I think any judgements people have are quite uncalled for really. I don't even know if any of the things I do will even have the slightest of impacts but I have the hope they will have the slightest of impacts. That is the aim... the slightest of impact. Any gain at all motivates me. And I will do anything that I can for any improvement. And therefore I do not like being mocked for what I try or being judged for not doing enough. I have done more than enough over the years compounded by infinity. Trust me on that. That I continue to try is worth something. And if you think it is right to judge someone on their lack of perfection then be prepared to be judged in return. That is all I am saying. No one has a perfect lifestyle. Not people in perfect 'health' and not people with an illness who think their way of coping is better. No one. So no judgy-mc-judgy-pants. Pisses me off.

The Fibro Flare smacked into me

Ever had one of those days where you wake up and you're just like 'what the hell happened while I was sleeping? Did I take a tour of the underworld and get beaten by a cohort of rampaging demons?'

That is what I felt like when I woke up yesterday and continue to feel like because the pain level was so high I could not sleep. So I did not sleep. At all. I did work in a nap eventually in the afternoon. I managed that because the migraine that really kicked in from that not sleeping idea forced me to take a triptan and those, rather fortunately in this case, cause insane drowsiness plus the fact I was really tired on top got me a couple hours of sleep.

It was what I like to call a massive tendon and ligament malfunction or otherwise known as a fibro flare. Like every damn tendon and ligament and muscle has been over-worked so insanely they all hurt like burning hell to move. It was really bad from the waist down. And moderate from the waist up. And... completely uncalled for. Not like I did anything that would have ignited a flare. I know the weather turned cold today... so maybe that? Or random turn of fate I guess. They are so damn unpredictable.

So immediately I think maybe I should 'stretch' out that pain a bit in my legs. I do some stretches, a few yoga moves... that sort of thing. One... very painful. Two... now weak in the legs. Three... now the tingling in my feet hurts too. So that was a bad idea.

I really desired a nice hot bath to submerged all the pain into. But I knew I had to resist that idea. Hot baths drop my low blood pressure into some low range that makes me dizzy, weak and horrible feeling for hours. Not worth it really.

At least the migraine is mostly under control. And after I rubbed menthol cream on me pretty much everywhere, twice, I seem to be able to move my legs a bit more. So that is something. Maybe if I sleep the flare will be done. One can hope because I am forcing myself to do my easy yoga tomorrow no matter what.

“It is sometimes an appropriate response to reality to go insane.”

It is sometimes an appropriate response to reality to go insane.
—  Philip K. Dick, VALIS

I think is is hard to understand 'normal' when you have chronic pain. I think your perspective on reality changes too much to fit into the realm of normal quite so well. Which is fine, normal people don't fit into normal as well as they want to or think. I think normal is an 'average' not a thing in itself. However, people with chronic pain are far from the average.

Why do I think that? Because pain can be a real torment. And people who suffer a real torment think a great deal about suffering. Suffering and life. Life and suffering. This is not to say we get any profound wisdom from it. Some perhaps do. But the fact we think about it a great deal means we are just more reflective than the average person. We are reflecting a great deal on what this life means. Sometimes it seems all the pain drives a person mad and that is the appropriate response to existing in such a state... insanity. Or sometimes I think we must be the sane ones in an insane world. Sometimes depression comes from the failure to find meaning in this existence. Sometimes we get out of depression by finding meaning in places others do not because we must find meaning somewhere to survive.

Unfortunately it is difficult to turn off our thought process because we cannot turn of the pain. That is something that is a constant part of our existence that we must come to terms with. And our thought process is part of coming to terms with it.

I know I am my worst enemy when it comes to my thoughts. Maybe that is because the pain is a special sort of madness. One that makes you realize the insanity of the situation you are in. And the insanity of the world around you. And how no one, but you, can seem to grasp this fact.

But fine. We are wise, mad, eccentric hermits who wear our sunglasses at night. People don't get our chronic pain, because they don't have chronic pain. Makes sense. They don't get how we feel about the entire experience of living with chronic pain because it is so far beyond their comprehension they need to experience it to earn the madness and wisdom a decade or so will get you before they 'get' the philosophical angst of it, the lived experience of it and the existential being in it. Then we can share a tale or two. Because when we are all old pain pals, we all know what it is like on all the levels of our existence.

Living with Chronic Pain: Discovering Gratitude

Living with Chronic Pain: Discovering Gratitude "It can be difficult to feel thankful when you live with chronic pain.  Because pain may interfere with important areas of life, you may have suffered some difficult losses. Over time, you may have become more resentful and less thankful.   But, if you take the time to notice, you may find that there are relationships, activities, and experiences to be grateful for, even though you have chronic pain. With practice, you can discover gratitude again and experience the many benefits of feeling thankful."

I know what you are thinking:
As soon as someone suggests you should think about all the good things and things you should be grateful for... you might want to bitch slap them. Especially if in that moment you are in a great deal of pain.

Well, as the wise poets of Monty Python once said:

It is in fact easy to be resentful and bitter. Or feel like you lost a lot of your life to pain. Or compromised on a lot of things. Given up on a lot of things. You can see how things could have been a great deal different. But they aren't. So we do have to deal with that fact. And part of that is just acknowledging one awesome or positive fact every day about your life, not the what if life.

Fact is it takes something like three positive thoughts to replace one negative one. So I think those of us with chronic illnesses and chronic pain face an uphill battle as it is. It is difficult. We have a fine facade sometimes, but it is difficult to keep our inward mood balanced and up and maintained. We know all the things to boost our moods... listen to music, take a walk, sleep well, eat well... and more tips and tricks. But it can be a real struggle. Yet one thing is to simple reflect on our day and note one thing we are thankful or grateful about it, or our lives, at that moment and write that down. Does not seem too much to ask in the scheme of things right? Like we often say 'it is a bad day, not a bad life' so we must be able to pull out one thing a day about our lives we are grateful for.

Drs. Robert Emmons and Robin Stern study the therapeutic effects of gratitude. They say that gratitude is “… an affirming of goodness or “good things” in one’s life and the recognition that the sources of this goodness lie at least partially outside the self”.

According to Drs. Randy and Lori  Sansone, feeling thankful is: “The appreciation of what is valuable and meaningful to oneself; it is a general state of thankfulness and/or appreciation”.Dr. Alex Wood and colleagues define gratitude as: “Involving a life orientation towards noticing and appreciating the positive in life”.

And basically exercising this has merit. "The idea of gratitude as a “general state of thankfulness”  or a “life orientation” is interesting. It suggests a way of life in which you regularly focus on what is positive and less on what is negative, on what you can do  rather than on what you can’t do, and on what you have rather than on what you don’t have. People who genuinely feel grateful on a day-to-day basis tend to report greater well-being, better functioning, and less depression. The better you feel overall, the better you will manage your pain."

How do you cultivate your inner gratitude? Some people have a gratitude diary. And they write something they are thankful for in it each day. Helps you focus on something positive you get from each day. And it can literally be anything. Today I was thankful my spouse cooked supper. And that he brought me home a coffee and a chocolate chip cookie on his way home from work.... just because. When he does those small things just because, it means he is thinking of me and it gives me that warm fuzzy feeling. And I am grateful for a considerate spouse.

And here is "a Gratitude Worksheet. Take your time and work your way slowly through the worksheet.  Click here to see an example."

It is a good idea to write it down as well. There is something to contemplating what we are grateful for and then every day writing down something. Getting into that practice. It might be for you the perfect time is first thing in the morning. For me, not grateful for too much then. Don't really have a functioning brain. So for me the perfect time is in the evening as I am preparing to go to bed.

A few of mine the last week have been...

I am grateful the weather as turned nice. Seems we have a wee break from the winter. Thanks winter!

I am grateful for low pain days. I suspect the fine, stable weather might be why I am thankful for a rather nice low pain day today. A nice pain free gap too before the migraine hit. And when it did, it was rather tolerable. Much thanks for tolerable days!

I am grateful for some good tunes. I am trying out ways to relax before bed and today mellowed out with some sleepy time tea and retro 80's tunes. Put me in a downright good mood. And nice and sleepy too. 

I am grateful my spouse cooked supper today. To be honest I was pretty knocked out today and really could not think of anything to make. So thanks my awesome man! You rock!

Dermatologic Manifestations of Fibromyalgia

I have the Pruritus... which apparently is real itchy sensations. Had to Google that. I also have eczema which isn't listed. And the two do not go together. I scratch and then get hicky like rashes as a result, in lines of where I scratched, which then bruise. It can look quite impressive considering all I did was scratch my leg. So no scratching is the moral of that story. Unfortunately, when I say itchy, I mean Itchy. Especially my calf muscles. Drives me insane. I use a lot of lotions, of which have no extra chemicals or fragrances... but can be oatmeal based, or aloe, to help with this sort of thing. Anyway, I never used to have eczema. It just cropped up some 8 years ago out of the blue... after I had been scratching my torso. And I was like 'what the hell?' as I had all these red welts and tiny red dots all over the place. I went to the ER and they said I had an allergic reaction. Gave me a shot of benadryl. I was like allergic to what? But no one would test me for anything. Second time, I was told, no, it is eczema. Even though it isn't dry skin or around joints. I can say, for certain, the itchy skin issue has been around as long as the FM though... just now, sort of have, consequences to it so have to really resist ever scratching.

Dermatologic Manifestations of Fibromyalgia.

By Valerie Laniosz, David A. Wetter and Desiree A. Godar


The aim of this study was to determine the common dermatologic diagnoses and skin-related symptoms in a cohort of patients with fibromyalgia seen in a tertiary referral center.

A retrospective chart review was performed of all patients with a fibromyalgia diagnosis from January 1 to December 31, 2008, whose diagnosis was confirmed in the Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic in Rochester, Minnesota. Charts were reviewed for dermatologic conditions and cutaneous symptoms. Demographic and clinical data were collected to assess the frequency of skin-related issues in patients with fibromyalgia.

Of 2,233 patients screened, 845 patients met the inclusion criteria of having a confirmed diagnosis of fibromyalgia. Among these fibromyalgia patients, various dermatologic conditions and cutaneous problems were identified, including

  • hyperhidrosis in 270 (32.0 %),
  • burning sensation of the skin or mucous membranes in 29 (3.4 %),
  • and various unusual cutaneous sensations in 14 (1.7 %).
  • Pruritus without identified cause was noted by 28 patients (3.3 %),
  • with another 16 patients (1.9 %) reporting neurotic excoriations, prurigo nodules, or lichen simplex chronicus.
  • Some form of dermatitis other than neurodermatitis was found in 77 patients (9.1 %).

Patients with fibromyalgia may have skin-related symptoms associated with their fibromyalgia. No single dermatologic diagnosis appears to be overrepresented in this population, with the exception of a subjective increase in sweating. Prohealth
 Here what happens to me when I scratch. As I said I avoid it. This happened one day when I had that damn itchy sensation and when I the shower I scratched along the side and back of my legs, to just relieve that itch. And didn't pay much attention that under the soap was the little red dot explosion. This is a picture taken a few days later, so while you can see the red dots in some spots it is already mostly merging into a bruise. Because those red pin prick dots are blood rising to the surface, and they spread out and what looks like a bruise forms. But a bruise that does not hurt. It can look red, purple or brown in color... so all bruise like, but no actually injury so no pain. But, if I were to say, scratch my arm, the skin is thinner and the pin prick blood spots rise to the top but may pop, so I can get scratches, no bruises... and that isn't good. I cannot even scratch through clothing, as even that friction has caused the same reactions. I personally don't think this is eczema. But what do I know. All I know is that I do have to avoid scratching, even if that damned itchiness drives me insane. As I said, it can be the worst in the calf muscles I find. In fact, is there right now. But I just have to not do anything about it. But really it can hit anywhere. I watch the material I wear and the type of laundry detergent I use. Use lotions to keep the skin moisturized. No fragrances. I only use Dove soap as well in the shower... no shower gels with those poofy sponges... because what you are going is essentially scrubbing your skin and that is just another form of scratching. Sigh.

And I should note that not too long ago I developed a reaction to Shampoo. Spontaneously.  My scalp would have this insane tingling itch all damn day and I could not figure out why. But obviously with my experience on the subject... did not scratch. The scalp is sensitive skin I can't imagine that would be good. Also notice right at the hairline was equally itchy and even sensitive. I knew it had to be my shampoo even though I used the same one for years, having found one that worked so nice. But no matter which brand I tried, same result. Even an organic one. Seems like I was reacting to the sodium lauryl sulfate in shampoo. And it is in damn near them all. So I used head and shoulders to control the itch factor, as I had heard it helps with eczema itch as well... but that brand also has sodium lauryl sulfate, so really I was controlling an itch but causing it as well. Finally I found a brand that had no sodium lauryl sulfate. An organic brand that actually takes the name seriously, and you have to look at the label to really ensure they do. And I do not react to it. So I am definitely sensitive to that chemical, which by the way is in a lot of products including body washes. It may be worth it to me to find a new body soap to be honest, one that is like this shampoo... completely organic.

This is the shampoo I have been using
And this is the ingredients is shows

When to disclose an Invisible #Disability in a #relationship?

The more extreme physical chronic illnesses can make dating seem unrealistic or especially difficult, causing people like Pierce to think, “don’t even tempt me.”
One major issue chronically ill people face in dating is disclosure. The question of when to share the illness with a prospective partner fills online forums, videos, articles, blogs, conferences, and discussions. Sharing too soon may scare the person off and sharing too late may lead to a lack of trust. Love in the Time of Chronic Illnes
 If I were single and you asked me now. No. I would say no. Because I am a hermit. I have no energy and am in too much pain. I would feel I have nothing to offer someone. Hell, there are times the guilt consumes me of what I think I have taken from my common-law spouse. Yet I have had conversations with him about it and he doesn't see it that way. Maybe we have more to offer than just our health. Maybe we are more important than that. Maybe we should realize that many people develop chronic illnesses in their lifetimes and their spouses don't just ditch them. I did not break up with my common-law spouse when he developed gastroparesis or cancer. The first scares me, the second terrified me... but the suffering of our loved ones in many ways is harder than our own suffering. Chronic illness is a strain on relationships in many ways, but it isn't the defining characteristic about them.

When I met my common-law partner the only health condition I had was hypermobility syndrome and I really didn't know at the time that was anything other than 'really flexible with a side of pain'. But I did know that I had a lot of other mystery symptoms that didn't add up and had been seeing doctors since I was little. I had stopped all that when I went to university, although the symptoms got worse. I adapted and continued on. I met him and disclosed pretty much right away because part of my 'adapting and moving on' was moderating my social activities. I was in university after all. I had taken a year off to help develop ways to cope with the worsening of symptoms to an undiagnosed condition but when I returned I had every intention of achieving honors (Which I did. Yay me). Which meant not working while in school and not too many social activities either. But people at that age... lots of things to do. Always getting invited places, constantly. My roommate at the time was rather protective of me and would insist to others that I was 'studying' and I think she would have fought other more 'partying' friends off with a stick if she had to, because she got that I couldn't do both. And I had this other friend at the time who persistently wanted me to go out on school days or every weekend. Even though she knew I wasn't up for it. So I had to be open about the fact that I had issues with insomnia, fatigue and pain. And it was very shortly after I was diagnosed with fibromyalgia and then migraines.

I honestly had not been looking for a relationship. Felt I could not offer enough time and energy to someone. Felt I rather had failed at the last one. But when the relationship just happened rather spontaneously I did mention my health issues... like I would to anyone, sort of in a casual way. That completely undermined the seriousness of the symptoms because I always did that. Still do. Stoic is my middle freaking name. But also because at that age and because I didn't have a diagnosis it was sort of embarrassing. Like a weakness I could not explain. (Yeah I have this pain all over for no particular reason. And a bunch of random symptoms with no explanation. But, no, I'm not a hypochondriac.) So I believe I went with my chronic insomnia and hypermobility syndrome explanation... along with a vague 'have had a lot of tests for other things but have not yet found anything'. Yet I had to mention it because I Could Not keep the pace of other people and that also meant I could not, I expected, keep a normal dating pace either. I didn't want to seem like I was brushing him off. It worked out this way. We did go out every second Friday and had some good times. But we also would stay in and play cards, him, me and my roommates and I remember those times fondly. We taught ourselves card games from a book I had. One of the ones we played most often was Canasta. And this is low energy use for me, but with a group of people was great fun.  Seriously I remember those early days of our relationship quite fondly. I did awesome in school. We had some real awesome times. And were in loooooove.

He didn't think my health condition when it wasn't defined or when it was was that important. He didn't think my limitations were that big of a deal. My illness never defined our relationship. I have a way of laughing about my health nuances and maybe that made it a bit easier. It was never seen as something that serious. To this day he finds endless amusement in my complete lack of balance, but always, always holds my hand to prevent me from 'spraining an ankle' or 'falling down a slight incline'. After knowing him maybe a few months I had in fact severely spraining my ankle running up stairs, and then my back going down the same stairs not too long after. They were steep stairs. He also has a lot of empathy. He had problems with me working most of my summer jobs, which were to be honest all jobs I should not have been working with FM (all learning experiences at what jobs Not to work). And he saw the impact they had on me. And for one a doctor insisted I not continue, although was rather moot since the summer was over. He never doubted my pain or symptoms. But never had a problem dating someone with this health problem either. It was not something that could be treated (or there was, but all my doctors were douchebags and didn't treat it. I was too young you see) so I did the best I could to cope. He did the best he could to help. Always cooked for me. Always did the shopping for me. He was a real sweetheart. I think he cooked because I sucked at it, but still, sweet.

Chronic illness is no doubt a deal-breaker for many people. 
On, the question of whether people would date someone with a chronic illness has come up more than one time in the forums. Some would if they really liked the person. Some would if the disease or illness wasn’t contagious. Some have and realized it was too much for them and won’t again. And then there are people like the person in the forum who wrote, “No, no, and no!!” and explained that she doesn’t want anyone to interfere with her active life.
Freelance writer Sascha Rothchild, in an article on, considered the question of whether she’d date a chronically ill person. She wrote, “Was I really willing to step into a relationship with someone with health issues when love is hard enough healthy?” In her case, she was, but clearly not everyone is. Or, if they are willing to take the leap, find it too difficult later. There is a statistic—“75 percent of marriages dealing with a chronic illness end in divorce”—that floats around forums and sites like and Focus on the Family, but I was unable to find its origin.
Some people just don’t want to end up caregivers or to mix “that world and this world,” as the girlfriend put it in the film “50/50”—starring Joseph Gordon Levitt as a cancer patient. Others nip the idea in the bud, since they can’t imagine losing someone they love to a disease (even though 7 out of 10 deaths in the United States are from disease according to a report published by the Centers for Disease Control and Prevention.)
I think maybe it was easier to have begun a relationship so early with someone in the early part of my diagnosis. While I may have had that undiagnosed portion for many years, he was there for the diagnosis right at the get-go right in the beginning of our relationship. But it gave him an immediate understanding of what I had. He was there for the appointment and I explained it to him. I in fact already knew all about FM because it had been long suspected I had it, just not 'proven'. So he had all the information on hand right away. Had he ditched then, it would have been early and not bothered me. It takes me quite some time to become attached. Not a love at first sight type of personality type. However, my health did decline over the years with the onset of the chronic migraines. And that brings on a whole new level of pain and disability. It is true that can break a relationship. I can see how that might have added a strain he could not have handled as it became very hard for me to socialize and he still wanted to at that age. So that was a difficult time. We grew a bit apart there for a bit. He had to decide whether it was worth it. I have felt immense guilt about the cost there has been to him. Chronic illness affects everyone around us. It is just the way it is. He was willing to take on a lot for me. When I was working I was not capable of much other than working. He did all the shopping and cooking as a result. And with no complaints at all. And I was very thankful of that. But that was extra energy on top of his workday as well. Not exactly evenly distributed workload there. And a lot of stress and worry as well. He didn't want me to work but I continued because of student loans and bills. I should not have. I realize that, but I did. But all of this can turn to resentment and arguments and break a relationship. And we can feel like it should have been broken because we are so guilty we are ill. Not every year of our relationship was easy going for sure. But we have gone on for 16 years now so it is a good run so far anyway. I think you have to work through each issue that comes up with you as a couple and find the compromises you can make that work I guess. Most than one issue can arise, but if they are not dealt with both parties can feel wounded on these health related issues.

So maybe it is a deal-breaker for some in the beginning of a relationship but for me I think I was lucky to have it happen the way it did. For others I think they might be better to become ill when the bonds of love are strong. You can never know. So maybe you would not choose to be with someone with a chronic illness because of some misconception about it... but illness comes to us all and maybe you will choose to stay with a loved one when they become ill. Love is not infatuation. It is full of complex feelings and bonds that I doubt people fully comprehend. But I would not just leave someone I love due to illness. When my spouse told me he had cancer me stomach felt like it fell to the ground. I just shook with worry and fear and anxiety. No way in hell did I have one foot out the door. I asked a hundred questions and then began to Google and then had more anxiety. But I was There.

These are often the objections the chronically ill face from people who aren’t sick. Karen Swindells, 27, who has epilepsy, says a guy once dumped her right after she had a major brain surgery intended to reduce her seizures.
“He felt like nothing positive was going on in my life at that time,” said Swindells, who works at a college bookstore and is now married. “He couldn’t handle it. It was too much. Too depressing.”
And being There for someone with a chronic illness isn't an easy thing to do sometimes either. I have FM and I have chronic daily migraines. Those two together when I was working nearly killed me, literally because I decided that life really was not worth living. As I imagine many people with that kind of pain think about or contemplate or act on. However that had a profound impact on my spouse. He knew I had trouble with work obviously but he did not know how suicidal ideation comes into play with acute pain and sleep deprivation, expcially with those damn status migraines. Nor did he ever think I would contemplate that or act on it. I think it hurt him a great deal that I never said anything and that I thought of leaving him that way. It hurt me a great deal After to realize the impact I had. But pain, distorts a lot of that, you just want pain to end. So I had to explain a lot about the nature of acute pain when it lasts a little too long without any relief. And that is why he is so adamant I never return to work. I don't know if that is feasible however I do agree with his declaration I never return to my previous employer. However, depression, anxiety and mental illness are very comorbid with chronic pain. Hard to understand in themselves. Poorly understood. And while our loved ones want to help they feel helpless. They feel as helpless as they are with the pain itself. We have to understand that that feeling of helplessness people feel... people react differently to it. Including not talking about, which can make us feel isolated. Or anger and frustration, making us feel misunderstood.

If I were to date again, which as I said, not likely... Sure I would still disclose right away, due to the plain damn obviousness of it, but the fact is I would feel like there is nothing there to offer. My spouse knows me. I am who i am. I have things to offer him and he knows my limits. I would instead be a weird eccentric recluse. Or a cat woman. Something like that. And likely okay with it. I've never had an issue with being alone.

How do you disclose? That is easy enough. Slip it into conversation. I cannot have wine it is a migraine trigger. Or 'wow it is sparkly out here'. Or 'Yeah I totally do wear my sunglasses at night. I am that cool or photophobic or both.'

Living with Chronic Pain Challenges Sense of Self: Study on the obvious to those with chronic pain

I think some doctors could learn a great deal by listening to their patients from time to time. Having a conversation maybe. Maybe then they might grasp how people feel when they have chronic pain. Instead we get studies as done in the Health Services and Delivery Research journal posting such results as this:

  1. patients struggling with the fundamental relationship with their body, and a sense that it is no longer “the real me.”
  2. a loss of certainty for the future, and being constantly aware of the restrictions of their body.
  3. feeling lost in the health care system; feeling as though there is no answer to their pain.
  4. finding it impossible to “prove” their pain; “if I appear ‘too sick’ or ‘not sick enough’ then no one will believe me."

1) I know I went through this and I am sure many people do in some fashion or another. It is a sort of coping mechanism I suspect. I viewed it is a sort of Dualism. My body, physically, let me down and would continue to do so because it represented a limitation on all my possibilities. Sure it was still me, but the real me, that was my mind. My personlaity and my capacity to think... my 'I think therefore I am'. It wouldn't fail me or change. In some ways I was very wrong about that one given when you add FM cognitive dysfunction, fibrofog, migraine neurological issues, and migraine brain fog into a big package you really cannot predict brain function. And there are times 'I' am very much not present and accounted for. However, partly it is very true. I can do that Myers-Briggs personality test year after year and every time I will come up with an INTP type... so that is consistently Me. However, if we are our memories, then I am a hazy me at best. There is this sense that pain 'dampens who I am' such that the more pain there is, the less me there is. That is certainly true. But in the beginning I say it as a very dualistic thing... body this limited part of me I could not depend on and the mental me the part of me I could depend on. Eventually this falls apart and you see it is all interconnected mind-body connected entity. Yet, part of you never fails to talk about your illness as something Other than you, when clearly it is been a part of you so long hard to separate the two and really when you are talking about a chronic illness it is something that will be a part of you to some degree or another forever.

2) Of course we lose our certainty for the future. We are aware on the drop of a dime things could get worse, which then can drastically affect our circumstances. That rather makes you think a little differently about the future. And we are constantly aware of pain, which limits our movements and is, yes, a restriction on our body. Modifies our lives. Our plans. Our possibilities. We have to make sure we adapt to circumstances. And we are aware no one else has to plan things to that extent or has those limitations or is aware of every body part at every moment of every day.

3) Really? We are lost in the health care system. Because the health care system has no answers to chronic pain. Hell, they only have basic training on pain. Such basic training they have no clue what to do about it, how to handle it or what even to do with patients who have it. Or even where to send them. And that is where stigma is born. And we know all about stigma. And we actually have been told there is no answers for our pain... so not so much as a feeling as a fact.

4) This should be really obvious if anyone cared to think about it for more than a minute. Pain can only be really 'seen' if someone is crying, screaming or bleeding profusely. If there is no behavioral indicator it can, and often is doubted to some extent. I feel it, you don't. How can you know what I am feeling? You have to dig a bit deeper. But you have only a minimal amount of training and maybe don't even care that much or possibly think I'm depressed. But let's assume you do care and there is no stigma involved. So you point to a chart and say on a scale of 1 to 10, 10 being the most amount of pain you have ever experienced what sort of pain are you feeling right now? And knowing my relative pain scale I say 6, which for any normal person would be at least a 9. We are assuming in this scenario I don't have a migraine of course. What is the problem here? First of all, 6 doesn't sound like much. Certainly not anything I could not tolerate, right? At least not on my chronic pain relativity of tolerating pain anyway. The main problem is that pain is relative. And having chronic pain skews that pain chart a vast amount. I tolerate pain all the time. I am expected to Function in more pain than most people could ever be willing to tolerate. That rather skews it. But tolerance is just a learned behavior. The ability to Have pain and Not show it, Not that I don't Have it and am not Suffering. We fear if we say 'how much pain are you in' and answer '8' all the time... no one will believe us, even though that actually is the answer. We have just learned that people expect us to endure that. Ironically if we endure that with a smile, we fear that no one will believe we have pain at all. And unfortunately Both are actually true. People will not believe you if you express your true level of pain all the time, because how can you be in that much pain All the time? And people will certainly not believe you have any real pain if you actually learn to function in any capacity and have the audacity to smile through it. No one can be in pain and smile. And if you have the further audacity to be depressed and be in pain, then actually you must just be depressed and not be in pain at all. We know there is no winning with the pain game and stigma. We know pain is subjective and trying to express it, through the stigma is insanely hard. We are told to function, and punished for it. We are taught to mask the pain, then doubted we have pain at all when we do it so well. We break down, clearly we are depressed. You also don't want to complain, or make a fuss, or appear to be a drug seeker or ignite any other possible red flag that doctor may have.

Ask anyone with chronic pain... and they will say what a damned obvious study. But maybe we need some damned obvious studies, right? So they can grasp a little obvious. Maybe teach a little obvious to those new doctors.

Thinking about lyrics today

I sometimes use lyrics in a poster I am making for a health page because lets face it no wants to read my poetry on the subject. Or maybe they do, but I don't often feel comfortable letting people read it all the time. And music hits us in certain ways. Some lyrics can mean something different to you than they were designed to mean... and that is fine. They song and music still speaks to you in some way.

These lyrics come to mind when I am in the dark, huddled with my pain. 
So they have meaning to mean in that moment

These Bee Gees lyrics have meaning as well. When you think that life is
just playing some joke on you. You can laugh and smile with you facade, but
the joke is on you. And when the pain is too much to bear... no one notices.

But you know it occurred to me some of the the songs I think about as relating to a pain experience were written about addiction. I think that is because with addiction there is suffering as well as guilt and we can relate to both.

The first is Blue October's 'Hate me'

The chorus expresses that guilt we feel for all our failings and how maybe it would be better if others hated us for it.
 "Hate me today.
Hate me tomorrow.
Hate me for all the things i didn't do for you.
Hate me in ways, yeah ways hard to swallow.
Hate me so you can finally see what's good for you."

And lines like: "In a sick way I want to thank you for holding my head up late at night
While I was busy waging wars on myself, you were trying to stop the fight
You never doubted my warped opinions on things like suicidal hate.
You made me compliment myself when it was way too hard to take
So I'll drive so fucking far away that I'll never cross your mind
And do whatever it takes in your heart to leave me behind"

The second is 'Hurt' originally by Johnny Cash

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything

What have I become
My sweetest friend
Everyone I know goes away
In the end
And you could have it all
My empire of dirt
I will let you down
I will make you hurt

I wear this crown of thorns
Upon my liar's chair
Full of broken thoughts
I cannot repair
Beneath the stains of time
The feelings disappear
You are someone else
I am still right here

What have I become
My sweetest friend
Everyone I know goes away
In the end
And you could have it all
My empire of dirt
I will let you down
I will make you hurt

If I could start again
A million miles away
I would keep myself
I would find a way

Then I watch this to amuse myself. :)

Side Effects: Steve Martin

Side Effects: Steve Martin

Side Effects
by Steve Martin

The New Yorker
April 13, 1998

DOSAGE: take two tablets every six hours for joint pain.

SIDE EFFECTS: This drug may cause joint pain, nausea, head-ache, or shortness of breath. You may also experience muscle aches, rapid heartbeat, and ringing in the cars. If you feel faint, call your doctor.

Do not consume alcohol while taking this pill; likewise, avoid red meat, shellfish, and vegetables. O.K. foods: flounder. Under no circumstances eat yak. Men can expect painful urination while sitting, especially if the penis is caught between the toilet seat and the bowl.

Projectile vomiting is common in thirty per cent of users-sorry, fifty per cent. If you undergo disorienting nausea accompanied by migraine and raspy breathing, double the dosage. Leg cramps are to be expected; one knee-buckler per day is normal.

Bowel movements may become frequent-in fact, every ten minutes. If bowel movements become greater than twelve per hour, consult your doctor, or any doctor, or just anyone who will speak to you. You may find yourself becoming lost or vague; this would be a good time to write a screenplay.

Do not pilot a plane, unless you are among the ten per cent of users who experience "spontaneous test-pilot knowledge." If your hair begins to smell like burning tires, move away from any buildings or populated areas, and apply tincture of iodine to the head until you no longer hear what could be taken for a "countdown."

May cause stigmata in Mexicans. If a fungus starts to grow between your eyebrows, call the Guinness Book of World Records. May induce a tendency to compulsively repeat the phrase "no can do." This drug may cause visions of the Virgin Mary to appear in treetops. If this happens, open a souvenir shop. There may be an overwhelming impulse to shout out during a Catholic Mass, "I'm gonna wop you wid da ugly stick!" You may feel a powerful sense of impending doom; this is because you are about to die.

Men may experience impotence, but only during intercourse. Otherwise, a powerful erection will accompany your daily "walking-around time." Do not take this product if you are uneasy with lockjaw. Do not be near a ringing telephone that works at 900 MHz or you will be very dead, very fast. We are assuming you have had chicken pox. You also may experience a growing dissatisfaction with life along with a deep sense of melancholy-join the club! Do not be concerned if you arouse a few ticks from a Geiger counter. You might want to get a one-month trial subscription to Extreme Fighting.

The hook shape of the pill will often cause it to become caught in the larynx. To remove, jam a finger down your throat while a friend holds your nose to prevent the pill from lodging in a nasal passage. Then throw yourself stomach first on the back portion of a chair. The expulsion of air should eject the pill out of the mouth, unless it goes into a sinus cavity, or the brain.

WARNING: This drug may shorten your intestines by twenty-one feet. Has been known to cause birth defects in the user retroactively. Passing in front of TV may cause the screen to moiré. Women often feel a loss of libido, including a full-octave lowering of the voice, an increase in ankle hair, and perhaps the lowering of a testicle. If this happens, women should write a detailed description of their last three sexual encounters and mail it to me, Bob, Trailer Six, Fancyland Trailer Park, Encino, CA. Or E-mail me at

Discontinue use immediately if you feel that your teeth are receiving radio broadcasts. You may experience "lumpy back" syndrome, but we are actively seeking a cure. Bloated fingertips on the heart-side hand are common. When finished with the dosage, be sure to allow plenty of "quiet time" in order to retrain the eye to move off stationary objects. Flotation devices at sea will become pointless, as the user of this drug will develop a stone-like body density; therefore, if thrown overboard, contact your doctor.

(This product may contain one or more of the following: bungee cord, plankton, rubber, crack cocaine, pork bladders, aromatic oils, gunpowder, corn husk, glue, bee pollen, dung, English muffin, poached eggs, ham, Hollandaise sauce, crushed saxophone reeds.)

Sensations of levitation are illusory, as is the sensation of having a "phantom" third arm.

Users may experience certain inversions of language. Acceptable: "Hi, are how you?" Unacceptable: "The rain in Sprain slays blainly on the phsssst." Twenty minutes after taking the pills, you will feel an insatiable craving to take another dose. AVOID THIS WITH ALL YOUR POWER. It is advisable to have a friend handcuff you to a large kitchen appliance, ESPECIALLY ONE THAT WILL NOT FIT THROUGH THE DOORWAY TO WHERE THE PILLS ARE. You should also be out of reach of any weapon-like utensil with which you could threaten friends or family, who should also be briefed to not give you the pills, no matter how much you sweet-talk them.

Oh #pain, you are so not my quit smoking buddy

The best thing that helps me cut down on smoking is distraction techniques. Coincidentally this also helps with moderate pain. Coincidentally I smoke as a negative stress relieving technique when I am in pain, particularly severe pain that I have nothing else I can do about. And distraction techniques as we all know rather cannot be used once pain reaches a certain cannot be ignored, cannot function level. So cannot distract from the pain. Cannot distract myself from the desire to have a smoke. Smoke to relieve the tension of dealing with the unresolved pain.

And I mean smoke a lot. I don't mean have A smoke. I mean I smoke a lot when I am in a significant amount of pain.

Essentially it is this fact alone that has caused me to start smoking again after quitting. It was just impossible to make it through a work day with acute pain, that I could not treat, without some sort of stress relief. And there went all the effort I had done to quit. It sucked.

I get that I am simply going to have to get into the mindset that when I am in a crapload of pain that this coping strategy, while psychologically helping me, is just something I cannot do. So I will just have to get used to sitting there is a crapload of pain. Sucks. Sucks a lot. And while I know there are other coping strategies to utilize, they are the ones that are better used in the moderate pain levels and not so effective in the severe range as well.

It annoys me currently because I am in a lot of pain. And not smoking. And thinking how much that sucks. But that is how this habit will get broken. I've taken a painkiller today. Screw wallowing in pain... I did that All of yesterday... and smoked way too much I might add. I need to get serious about cutting down and utilizing my nicotine replacement tools... rather than giving in to the pain and falling back on that habit. Having it tied to pain though makes it rather hard to break.

Which is why I have my 'fake smoke' actually. Makes my brain think it is smoking because 'smoke' comes out but it has no nicotine in it and is menthol flavored. I use it with the mints, because they go well together. Get a little bit of nicotine and fake smoke feel. I also have an electronic smoke I can use if I want. Because it is the act itself that I find relaxing.

Anyway, my psychologist also gave me a CD to listen to which I will load to the iPod. It is just a relaxation CD geared towards the not smoking theme. And next time I see him we will be doing a hypnosis gearing towards quitting smoking... and that I hope will help take the edge off.

#Pain #Patients Shouldn't "Tough It Out": Stop being #Stoic

I have literally been called 'stoic' by a doctor. I have talked about it on my blog before how I have developed this tendency. I believe they teach us to be stoic by their attitudes. By the time you find a good one you are pretty stoic and locked into the habit of it. But we should not be. We should be brutally blunt about the realities of our pain.

I believe in my case it is likely both due to my personality and past medical stigma. My personality type is introverted and also reserved by nature. (INTP type) One of those personalities that doesn't like emotionally awkward conversations and will go out of her way to avoid them but if confronted with them, will approach them in a rational way, rather than emotionally... which comes off aloof and like I'm not addressing people's emotional needs and like I don't feel the emotions myself (which I do, obviously, just think a rational approach is more productive). So with this personality type I'm going to be the last one to admit I'm having a 'problem' emotionally dealing with anything, but I will rationally discuss the issue... like the facts, and maybe toss some research out there. My neuros often say how 'intelligent' I am, and how 'unfortunate' it is I have this 'problem' with migraines. And I often think this sort of gets in the way of things. How this is how I face things such that I present as pretty high functioning when in reality it is pretty low functioning for me. And that they are just seeing this facade and not the roiling, seething emotions beneath it. But it seemed like i was coping with them fine. Because I present that way. That is just my personality type. I really, really avoid any emotional type conversations. And besides that, I want to say, migraines don't make me an idiot. I'm still as intelligent as I was. I still have the same capacity. I am just crippled by pain. Which apparently they have no capacity to see. And expect me to endure. Nor can they understand that pain creates suffering, whether I express that or not in public... I keep it to myself to torment me in private.

And I'm sure it all appeared great up until i tried to kill myself. Granted I gave them ample opportunity to know I was not coping with the level of pain. I did say I was not coping with the pain. I did say the words. I did express myself very articulately. But doctors need to see the behaviors and emotion, which I didn't express. But I definitely told my doctor more than once the pain was getting to me and I could not cope with that level of pain and work. He simply was too dismissive. He didn't ask questions or care to acknowledge what I was saying. My words were not enough for him.

And I Always under-expressed the pain. For years I did so. Because of the stigma with Fibromyalgia which I had experienced for Years. So you don't want to be seen as a chronic complainer. Or as a drug seeker. So since they always ignored my needs in regards to fibromalgia pain I began to see how they saw chronic pain as something that must be endured. That it was something they didn't quite believe in. So you must just suffer with it because they don't feel like treating it, so I did, and I coped with it. That they suspected it might be 'all in my head' or 'enhanced' by depression. So you do begin to be stoic. You do say what you came in for, you say that you are in pain... but that you cope with it. That you deal with it. That you never, ever take much medication for it (migraines that is, as I said no treatment for FM for decades). Which I never did, because I knew they would take it away if I did. Pain killers are unpredictable, you only get them for short periods of time so never, ever use them when you need them, just when you absolutely must. I did express when the pain was getting too much to handle, but I do understand that my personality and my developed stoic attitude likely hindered their capacity to understand 'words'. And I loath that even actions do not even make some doctors understand how pain has exceeded the capacity to cope with it.

However, this video is exactly right we need to not be stoic. With my new doctor I laid it on the line. But you have to understand at that point something in me had fundamentally broken. I could not speak honestly about pain without emotion seeping into my words... so that brought a level of honesty that anyone could not fail to hear if I spoke about the reality of my existence. Rather than my usual vague statements that is. And then when I was applying for long term leave my spouse and I, who share the same doctor had appointments on the same day and I was very anxious about my long term leave documents. I thought she would be like all my doctors and dismiss the seriousness of my pain and the fact I could not at all cope long term in the state I was in. I thought I would have to convince her... and that I would ultimately fail. I worried about what that meant about my future. However, my spouse had his appointment first. And he, also, was deeply concerned about what would happen if I returned to work. He was concerned I would become seriously depressed, or suicidal, if I had to work with that level of pain... which in fact was my concern. He expressed that to my doctor. His anxiety that my leave would not continue and what that would mean for me. And in comes my doctor and I express my anxiety about my leave. She says to my flat out that she does not believe I should return to work yet. I was stunned. I could not believe I didn't have to say anything. I didn't have to express my level of pain or how hard it was to function with it at all. It made no sense to me. Until i spoke to my spouse later and realized he had mentioned me to her prior to me seeking her. Literally advocating on my behalf without even realizing it.

So yes, I believe bringing someone else, who sees the impact of pain on your life. Who worries about that is possibly a very good thing. Because when it comes down to it the habit of downplaying your pain and being stoic about it due to various reasons is hard to break... unless you have been traumatized by it and it seeps passed your facade. But we are forced to hide it so much and we are faced with stigma so often it is really hard to truly express the actual impact of that pain. While others, they can see the impact, and express it more clearly. I may lie about things, the level of pain, my coping and be really stoic. But my spouse would say honestly... she doesn't sleep, she doesn't drive, she doesn't go anywhere... he would be honest about the facts. And if he was with me, then I would be honest about more.

Lost a day

 “I laugh because I must not cry, that is all, that is all. ”
― Abraham Lincoln

There will be days where the pain wins. Lost days. When you cannot function because the pain level is too high. Nothing gets done. No thoughts get processed. Time is warped. The day is lost.

Even if I could count all the lost days I would not want to. They are horrible things to be trapped in. At first you think maybe you can treat the pain. Maybe it will get better. Maybe you can sleep a bit. It all fails and things get all hazed with it. Mental functioning is all distorted and you cannot distract yourself like you normally would because the methods do not work with that sort of pain. 

But when it comes to chronic pain we have to except that lost days will happen. We have to accept that other people will not be quite so accepting of them. We were fine the previous day, were we not? To all appearances anyway. We functioned anyway. Due to that awesome pain tolerance and variability of chronic pain we can function one day and be laid on our ass the next. Hell, we can function one moment and be laid on our ass the next.

So of course we feel guilty about being incapacitated by pain for some reason. Feel horrible about losing the day and not being productive enough in our agony. But this is insanity. It is horrible to lose a moment to such pain. It is horrible to have to have chronic pain let alone lose a moment to the higher levels of chronic pain but we should never lose a moment over guilt about it. Our time is better spent doing anything we can to survive it. Because it is more difficult at the higher levels than it is a the moderate to moderate severe levels. We have our ways at those levels. But at the severe to acute levels it far more difficult to distract the brain.

I think of all the ways I distract my brain when in pain. And we must do so. In studies it is demonstrated to be effective... not that the pain 'goes away' but that it is less focused on. And we know that helps. It is just unfortunate once you reach a level you just cannot. So you lay there like a lump... and there is just this pain, and you, so what do you do? Well, things that require less brain power, movement and effort really are the best options. What TV, a movie, sleep. Meditate. Relaxation techniques. Listen to music if possible. Options are pretty limited to be honest. Because really the day is lost and it is a matter of getting through it to a lower level of pain that is more bearable.

And I find one of the worst things about high pain days is the end of the day. The night can be problematic.  If the pain is too high at night I can think too much while in pain, which is what happens when we have no distractions. And thinking when in pain is not a good thing for me. Often a slippery slope into dark thoughts. I always have to watch that one.

And then of course is the fact that sleep is next to impossible with such pain.

So here is to a better tomorrow. A better pain day. One not consumed by pain.

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