A Proper Pain Scale – Update!

15th January 2012 By Leave a Comment

I’m seeing the doctor again tomorrow for another adjustment to my pain medications. The current ones (Topiramate, Imigran) are NOT working, and I’m on a waiting list – apparently a very long one, for intracranial pressure monitoring. Pain levels (intractable headaches) are far too high. Ideally they should be negligible, but since we don’t live in a perfect world, I’ll settle for “I’m not screaming two hours before I’m allowed to take the next dose of Gravol”.

I can handle pain that is below a 6/10 on my scale. My 6 is probably a non Spoonie’s [normal person's] 8.

I take Imigran whenever I damned well please, even though technically you’re only supposed to use it a few times a month. Sometimes it works, and sometimes it doesn’t.  They can kiss my tukhus. But luckily the doctors know I’m taking that much, because they refill it without a fuss.

Here’s the pain scale I use, written by Allie, over at Hyperbole and a Half (reprinted here): http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

“1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don’t want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I’m scared.

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers:  You probably have ebola.  It appears that you may also be suffering from Stigmata and/or pinkeye.”

 

How this applies to me: 

Below a 6 is basically nothing to me. I don’t take meds, and I just do my thing: knitting, posting online in Amazon, etc: ”Hey, I’m not wearing any pants. I didn’t know that about giraffes. I’m sorry your cat died; can we talk about something else?”

So, my 6: “Ow. Okay, my pain is super legit now.”

Is your 8: “I am experiencing a disturbing amount of pain. I might actually be dying. Please help.”

When I get to a 9 or higher (“I am actively being mauled by a bear.”), I lose the ability to talk, and just make vague sounds.

15 January 2012: I’m not leaving the office tomorrow without something, and mark my words – it will not be paracetamol or another migraine medication, because those won’t do beans.

16 January 2012: Idiot put me on Tegretol and insists on treating these as migraines. Refuses to explain why.

18 January 2012: Had to discontinue the Tegretol because it caused severe RLS. It didn’t do anything for the pain.

UPDATE! January 28, 2012

A different doctor at the practice finally relented, and, after an hour-long appointment of wrangling and discussion this past Thursday morning, put me on sustained-release morphine, plus instant-release Tramadol for breakthrough pain. Gravol for the nausea, and Diazepam so I have a better chance of getting some sleep (which also means DH gets a better chance of sleep).

[As I walk into the office on Thursday morning]: “I’m going to throw up. Where do I do it – the garbage bin or the sink?”

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Hamlet Takes Medication

27th October 2011 By Leave a Comment

Oh, that this too, too brittled flesh would melt
Thaw and resolve itself into a dew,
Or that the Everlasting had not fixed
His canon ‘gainst self-medication. Oh God, God,
How weary, stale, flat and unprofitable

Seem to me all the ERs of this world
Fie on’t, fie, tis an unweeded garden
That grows to seed. Things rank and painful in nature
Possess it merely. That it should come to this:
But two months in pain, nay, not so much, not two,
So excellent a painkiller, that was to this
Gravol to a Tylenol, so soothing to my headache
That he might beteem the winds of heaven
Visit my forehead too roughly. Heaven and earth,
Must I remember? Why, he would hang on my eyes
As if increase of appetite had grown
By what it fed on: yet within a month -
Let me not think on’t; frailty, thy name is Advil
A little month, or ere those pills were old
With which I drugged myself,
Like Sleepy, all yawns, why he, even he -
Oh God, a pill that wants discourse of pain
Would have worked longer! – mixed with my Tylenol,
My Advil’s supplement, but no more like my Gravol
Than I to an athlete. Within a month,
Ere yet the salt of most pained tears
Had left the twitching in my pale face
Gravol increased. O, most wicked speed to post
With such dexterity to mixed medications!
It is not, nor it cannot come to relief.
But break my heart, for I must hold my tongue.

I wrote this in February, 2006.

 

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Chronic Pain

26th October 2011 By 1 Comment

I don’t think, until and unless people have had chronic, unrelenting, severe pain for months or years on end, they can really understand what it’s like. People try and compare different acute pains to chronic. Good try…but it’s not the same thing. Chronic severe pain sucks the life-force right out of you. If I believed in the soul, I’d say it sucks that out too.

Unpredictably, your entire plans for the day can be rearranged in a millisecond depending on the maniacal whims of the pain in your body that you have absolutely no control over. You learn to be flexible. I used to get really annoyed at having to not do this or that at a moment’s notice. Now I know to have a number of variegated contingency plans ready in case either of us crashes.

I’ve heard people attempt to compare having fibromyalgia to having the flu. My husband has fibromyalgia. I don’t (I have cerebral palsy and hydrocephalus – the conditions that cause my pain). I’ve had the flu.

Influenza usually lasts a week or so.

Fibromyalgia has the following symptoms:

-chronic, widespread pain

-allodynia (a heightened and painful response to pressure)

-debilitating fatigue

-sleep disturbance

-joint pain

-brainfog

Some patients experience varying degrees of these symptoms. Not all patients have all symptoms, but most patients have the pain, allodynia and fatigue.

Unlike the flu, these symptoms do not go away, although the patient may have good days where symptoms are less troublesome. There is almost always some level of pain present.

Historically, fibromyalgia was considered to be a neuropsychiatric disorder (i.e. “it’s all in your head”). Since doctors couldn’t see anything wrong with the patient, and tests couldn; pinpoint the problem, they gave up and assumed the patient was malingering.

Male patients seeking pain management treatment have a harder time getting proper treatment. Unlike females, they are socialized to “man up”, “bear their pain like a man”, and other such silly and unhelpful trite suggestions. It’s bollocks.

Why is this post ending so abruptly, you might wonder?

Because I forgot what the next bit was going to be about.

Brain fog!!!!!

 

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Yarn and Chronic Illness

5th July 2011 By Leave a Comment

Do you have a chronic illness that makes your skin hurt, or sensitive to different touches and fabrics? You’ve come to the right place!

I have had severe chronic pain since I was 18, and have many friends with chronic illnesses. I met my husband on a website for people with chronic illnesses. He has fibromyalgia, which is a neurological disorder that means his brain often interprets inert stimuli as pain. Another mutual friend of ours, @Clairepie (on Twitter) has fibro as well, and I knitted her a blanket from Lion Brand Homespun yarn, a soft, acrylic. Homespun is consequently a yarn I use often; it works up quickly, and is super-soft and easy to care for.

Lion Brand Jiffy yarn, though it is 100% acrylic, does feel a little like mohair – slightly scratchy. I was quite surprised when I first began to knit with it how rough it felt. Eventually, I got used to it, but I’m not sure I’ll use it again for that reason. This is the yarn that I’m knitting the Shivanaut scarves with.

I need some new ideas…

So, I’d like to hear from you! What kinds of yarns would you like to be available in my shop, that would be comfortable for YOU?

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Doctor appointment tomorrow

3rd July 2011 By Leave a Comment

I’m seeing the doctor tomorrow, because he wouldn’t do his job last week. Last week’s appointment was supposed to be a routine request for repeats, a referral to a neurologist (start as early on it as possible because it takes a long time) and an increase in my duloxetine for migraines.

He refused to increase it last time until he’d bothered to read my records and the consultant note authorizing the use of this med AND authorizing increase of dosage, which isn’t licensed for migraines. 20mg is not enough. I am in PAIN EVERY DAY!!!!! How DARE he refuse to treat me!!!!! The one-page consultant letter was right there on his computer, and in the five minutes last week we spent arguing with him about it, he could have read it. He refused to until I come back tomorrow. I burst into tears when he said ”I’m not going to do that.” for the second time. Refused to do me a neurologist referral (which I desperately need and will take at least 3 months), refused to increase my meds. When I said I’d end up in the ER if he didn’t help me, Nath (DH) ripped him a new one. Then he finally prescribed my current dose of 20 mg. But he didn’t stick it on repeats like the rest of my medications.

I want to plunge my knitting needles into his eyes. Maybe I should buy and wear this t-shirt to the following appointment?

 

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