Thursday, 4 April 2013

Pain Pain Go Away: Lyrica



(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.

So fingers crossed. Besides as one of my old work friends suggested, if all else fails the name Lyrica does bring to mind some sort of Dysautonomia musical. So I could always write one of those. Purple compression stockings  and jazz hands would, of course, be compulsory. And there may be some spirit fingers action. And some sort of fan dance for our heat intolerant bodies. And a salty sea shanty. And......

Cheers
Michelle :)

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

10 comments:

  1. I hope it works for you, keep me updated as I'm in my fourth week of neuropathic pain in my left arm so haven't been able drive, which is my only indepence and typing one handed is time consuming and makes me right arm begin to ache!

    I'm going for physio next week but dreading it as as you say when you get the shooting pain it is unbearable but if someone touches me at the same time I don't know what I'll do! Currently taking a lovely cocktail of paracetamol, naproxen & tramadol - no help.

    Fingers crossed for you. x

    ReplyDelete
    Replies
    1. Hey JamJar it has been working quite well for me and so far no side effects which is nice. I had hoped for the weight gain but still nothing, but I am happy with the pain relief. :)

      Delete
  2. there's a NAME for that? I was told that the weird sensation of SIZZLING was because my nerves were growing back... it's been uhm, a full year now... wish those nerves would grow back already?

    Lyrica did indeed help me. I have PAF along with fibro, CFS, sarcoidosis, SFN, and now they're looking at MS or neurosarcoidosis to make me even MORE fun...

    HOWEVER...

    Lyrica shut my bone marrow down.two weeks in, I got what i thought was the most awful flu EVER. temps over 104... felt like my entire body had been beat with ball peen hammers.

    If this happens, please... they do NOT know why this happened and I strongly suspect that my oddball reactions to meds are BECAUSE of the Dys... so go immediately. ANd be aware. the FIRST night I went to the ER, they diagnosed me with a UTI and sent me HOME at 2am. the next morning, my temp hit 105.7.... my husband took me BACK... again. UTI.

    That night... friday... he got home from work around 11pm. I was having hallucinations the temp was so high.

    My white count was at 0.5

    The ONLY thing they could figure was a VERY rare reaction to the lyrica. So... if you get weird symptoms a few weeks into lyrica... PLEASE PLEASE PLEASE go be seen! and MAKE them do a CBC WITH a manual diff! don't take no for an answer....

    (I also developed not the rash, but pure true Steven Johnsons syndrome from Lamictal... so I get the rare reactions to stuff... we joke all the time that I should buy lottery tickets... and accept for all the rare stuff happening to me is NEGATIVE i would. LOL!)

    ReplyDelete
    Replies
    1. Oh wow Mel, that is shocking. I will definitely keep an eye out for any of that. So far so good, but wow just wow. That is a shocking reaction. (hugs)

      Delete
  3. Hoping for ALL OF THE good side effects. ALL OF THEM!

    MWAH!

    ReplyDelete
    Replies
    1. Thanks babe. No weight or sleepiness but hey pain relief, or at least taking an edge off it is rather good :)

      Delete
  4. It helps with my neuropathies, but it has taken away my orgasms. At this point, I am willing to live without them to be able to live with less pain. Not fair that I have to make that choice, but grateful that I can sleep at night. I hope you get the right side effects and the best of the therapeutic benefits!

    ReplyDelete
    Replies
    1. Abetterjulie, I hadn't heard of that side-effect till you mentioned it, but OMG you are right :( Does it ever go away? Please tell me it does. It is so wrong that we have to choose between pain relief and a little bit of pleasure every now and then. The universe is a bastard sometimes :(

      Delete
  5. Not the neuropathy too! GAHHHHHHH!!!! I just read your "numero due" post too - - we go through so many of the same things. (I'm "Pinky" from earlier comments where I didnt' log in).

    I also have hair loss (alopecia totalis) from whatever-this-neuro-immune-thing-I/we-have, and it's accompanied by nerve pain. Sometimes it's on the level of "only unbearable itching."

    Since all my tests come back normal I don't have a doc willing to prescribe major meds for me. It could be a blessing - perhaps - since that means I don't have to deal with side effects of the major meds, and have been left with self-treating with herbal/homeopathic remedies. Fortunately I've hit the jackpot with a few things (capcaicin cream, liquid magnesium), and am grateful for it.

    ReplyDelete
    Replies
    1. Damn we all share so much in common. I'm lucky that my neuro and cardio are pretty good at prescribing things for me and so far apart from a couple of meds not too many bad side-effects. Capcacin cream did bugger all unfortunately though I have heard of others having some relief from it. And magnesium is a complete laxette for me. It's such a trial and error with all of this. :)

      Delete

All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx