(Note: As always I am not offering medical advice of any sort, and not recommending any treatments. A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on hotcross buns and Easter eggs, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)
Pain has been my constant companion for
many years now. It took me a while to work that out as over my last
almost-40 years it became the white noise of my life. But of late the pain, or
my ability to shut it out, has become worse. And neuropathic pain in particular has
asserted itself.
Last year after my
week long in-hospital investigations I was given low dose EnDep to
try. At that point I was being tasered in my left foot nearly
constantly, with the occasional super shock that would make me jump
and cry out in pain.
“Have a sural
nerve biopsy” they said. “It'll be fine”, they said. “We do
it every day”, they said. “Sure there are some risks involved,
but that's sooo rare”, they said. Pity that Rare is my
middle name. Just like Special, Unique, Confounding and
Intriguing.
Now six months later
the good old sural nerve biopsy has left me with a traumatic neuroma
(again not a common occurrence, but who wants to be like everyone else?). This little fella adds constant
burning pain at the site of the incision and below to my mix. I am told that
part of this is phantom pain (just like when a limb is removed) as
the nerve itself has actually been removed. Pity the trauma of the surgery,
subsequent infections, repeatedly splitting wound etc all got together to create
new pain pathways in my brain. Fun times. Trying to undo or quiet
these pathways is going to be my new goal.
To give you an idea
of the level of pain for those who are lucky enough to not experience
neuropathic pain. If you were to get road rash, dip the area in lava
and then rub broken glass into the wound. That would come sort of close.
Luckily, I do have
some variation in the intensity of the pain so it's not always at
that level. But there are many a days that the breeze from a fan can
bring a tear to my eye. Unfortunately, this isn't my only patch of burning or zapping, just one of the more recent additions. I remember a few years back when it started
in my right toes. My now deceased cat sat next to me with her soft fur
touching the tips of my toes and it brought tears to my eyes and a faint whimper
to my lips. Not a lot has changed since that time, although the house
no longer smells like cat pee since Monty went to the big cat
scratcher in the sky. (I loved her but incontinence and dementia in a
cat are not exactly endearing attributes.)
Along with
distraction and desensitisation techniques (more painting and
blogging and rubbing moisturiser into the site whilst trying
not to scream) I am going to be trying Lyrica
(Pregabalin). Luckily this year Lyrica came on the
Pharmaceutical Benefits Scheme (PBS) here in Australia and I was a) finally able to afford it and b) my neurologist was finally happy for me
to try it at a low dose with an option to increase (I am a sensitive soul when it comes to medications).
Lyrica is an anticonvulsant used in the treatment of epilepsy, but is also used in the treatment of neuropathic pain with quite a lot of success. It's been around here in Australia for a while, but the cost has been prohibitive till now.
Like all medications
Lyrica has side effects (fun things like suicidal ideation get a lot of paragraphs devoted to them on the MIMS sheet that came from my pharmacist. Not disconcerting in the slightest, no, no way, no how, hmmmmm......). I'm however, choosing to focus on the two that get the most air time on the patient forums: weight gain and
drowsiness, which I am really hoping to experience. So far no dice
with either but I am able to increase my dose so I am hoping that
I'll soon get the magical trifecta of:
Pain Management,
Weight Gain, and
Sleep.
Wouldn't that be
lovely?
(NB: I did check in the mirror again tonight and still my thighs refuse to touch. Maybe it's time to also double my dose of hotcross buns and Lindt bunnies. Come on weight gain!)
Recently I read an
article where a patient with Guillain-Barre' Syndrome (GBS) and consequent severe
Dysautonomia was given Lyrica (six times my starter dose, though) and it attenuated all her Dysautonomia
symptoms. How fabulous would that be for an outcome? Now I'm not
going to get greedy or overly optimistic and add this to my list of
potentials but lets just say if that were to occur I would be one
happy little camper.
So here's hoping.
It would also be
kinda nice if the the zaps up my legs, the bone pain in my left leg and right hip, the patch that feels like raw
flesh on my back or the burning on my thighs would finally be controlled. Or
if when Mr Grumpy touches me I don't grimace or wince. 'Cause that's
kinda a passion killer.
It's not that much
to ask really.
Cheers
Michelle :)
How could I go past some classic Johnny Cougar/John Mellancamp/John Cougar Mellancamp/John whateverhislatestincarnation, on a post about pain.
