(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:
Weight Gain, and
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.
How could I go past some classic Johnny Cougar/John Mellancamp/John Cougar Mellancamp/John whateverhislatestincarnation, on a post about pain.