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Showing posts from January, 2014

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 tim…

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, s…

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 me…

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…

“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 …

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 o…

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 a…

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…

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:

patients struggling with the fundamental relationship with their body, and a sense that it is no longer “the real me.”a loss of certainty for the future, and being constantly aware of the restrictions of their body.feeling lost in the health care system; feeling as though there is no answer to their pain.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 limita…

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 Bl…

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, c…

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…

#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…

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 fun…