[Journal] Tweaking the meds again

Over the last few months, I’ve noticed that my ‘nerve pain’ has been coming back.

Nerve pain is the term I use to describe the sporadic, usually-short-lived bursts of pain from parts of my body. Sometimes it feels like a knife in the knee, another time it’ll be a back spazm, the time after that, it can be a very short cluster headache. It’s always random and entirely unpredictable and is very intense. Usually enough for me to cry out/swear/punch a table/use your imagination here, and stop me in my tracks. It can hit anywhere from between my fingers through to *ahem* very specific bits of my ladyparts (which is NOT a fun experience, I can tell you). Anywhere where there might be a cluster of nerves. It can happen once a day, or anywhere up to 50+ times a day. It depends on how much of an arsehole my body is feeling like at the time.

Now, I was initially put on Lyrica in the hope that it might help my overall pain levels, but it only succeeded in making me really groggy. We upped the dose to the 150s I’m on presently and found, quite conveniently, that it actually stopped my nerve pain. Not altogether, but to such a degree that it took my daily average of “[Inert expletive here]!” down from about 30-odd times a day to about 1 or 2. It was amazing. I still felt like a zombie, but I could go about my business without looking like I was about to have a stroke in the middle of the supermarket because my knee just felt like I had been stabbed by an angry dwarf on cocaine.

The problem is that my body, never being content to take the easy street, has decided we’ve built up a tolerance to the Lyrica. So we’re still Queen Derp, but the nerve pain came back and announced itself most spectacularly with a punch-in-the-head cluster headache the other day that had me hugging my own skull. I had noticed an increase in the amount of nerve pain up to then, but had chalked that down to stress and other things.

Now, I had called my specialist a month or two beforehand to let him know that we couldn’t increase my dose to the 150 because I was already on it, but had heard nothing back. This morning I left a message and got a call back after I had already discussed my issues with my GP.

– On an aside, awesome news. Turns out my sinus infection was a twofer. One bacterial, one viral. Yeehaw –

Long story short, I’m right in my assumptions, my GP no longer thinks I’m an idiot and I get to pay less for medication. Downside is that we’ve got two options, both okay’d by my specialist. Option A is to double the dose of Lyrica I’m on and see if it fixes the issue, but then I’m on twice as much as I was before with every chance of me just having the same problem. Or B, we can wean me off it, stay off it for a month to clear my system and then start it up again and see if it works. I feel like this is the human equivalent of “have you tried turning it on and off again”.

I’ve opted for the second one because, frankly, knowing how my body reacted to going on Lyrica, I’m going to be completely braindead if we double the dose. I’m barely functioning now, but at least I’m not putting-my-hand-in-the-sandwich-toaster kind of stupid. Yet. The issue with coming off the Lyrica, though, is the same as going up a dose. It’s not going to be fun. From what I know, it won’t be quite as bad as coming off the Duloxetine, but it’s still not overly fun. And this isn’t the nice, gentle let-down either. It’s a week of every other day and then cold turkey because we need it out of my system asap.

So, tonight is the first night of no Lyrica. I won’t fully feel the effects until about tomorrow afternoon, knowing my body (or maybe sooner, who knows) but I’m probably going to feel like I’m hungover without the ‘fun’ of actually getting there. After this, both my specialist and my GP have said that this is pretty much it. There’s nothing else we can really do without any more research or findings. It’s the end of my proverbial golden road of treatment until someone extends the footpath. Ultimately, if all the Lyrica is doing is stopping those shooting pains (and I’m getting a head full of wet sand in compensation), I think I’d be happier being off it entirely. I’m going to keep logs of how I’m going in regards to pain, just to see if it’s actually worth being on yet another tablet for much ado about nothing in the long run.

Anyway, I’m exhausted, so I’m heading in for the night. As a treat to those who have made it this far, if there’s any animal, mineral or vegitable in particular you want to see immortalised in a comic or just on it’s own, leave a comment and I’ll get back to you at the sound of the beeeeeeep~

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Ups and downs

Good news everybody!

Yesterday, despite all the runabout and fuss, I finally got my diagnosis of Fibromyalgia and CFS. After 10 years of chasing the reason I’m in crippling pain day in and out, I finally have clinical proof that it’s not in my head. I was in a stupid amount of pain, but I was just about ready to click my heels and dance down the hallways of the hospital on my way out from the specialist appointment. It’s amazing how something so minute in the scheme of things can mean so much and change everything.

When I was a sproglet, I was told everything from “it’s in your head” to “it’s just growing pains”. I was told it would vanish by the time I was 18, not get worse to the point where my pet name amongst friends is ‘cripple’. So, it’s a massive weight off my chest to know several things at this point:

1. My pain is valid. Hell, I am valid in feeling the way I do. I like that word. Valid.
2. The source of pain is what I suspected all these years. Fortunately it’s just going to hurt like fucking hell and won’t kill me. That’s the biggest thing that had me worried.

3. Now that I know what my enemy is, half the battle is done. I can go about pain management and getting my life back on track.

4. Now that I have a diagnosis, I can do things that have been put off for years – applying for disability pension to keep a roof over my head and getting a parking permit for the really bad days.

 

I will totally be having a diagnosis party when I can get some free time 🙂 I think it’s the ultimate way to celebrate the closing of that chapter of my life. No more chasing doctors for referrals! No more having to explain my life story to random gits and get poked and prodded and judged! No more cold hospital smell!

Shire horses on Juist

Shire horses on Juist (Photo credit: gerriet)

After all the stress of the appointment, manthing took me to see the Shire stud owned by a family friends. It really is amazing how pain melts away when you’re around animals you love. We spent hours there and talked and talked and talked about all sorts of things and then it was feeding time for the gentle giants. I still can’t get over just how HUGE these horses are (and I own an Irish Wolfhound. I know big!) and just how amazingly gentle they are with people. Cheeky, sooky, lovely things! We watched them play musical chairs with the feed buckets and I got to see just how big a 9-month-old foal is. My god, she’s bigger than my car! I only wish I had taken some photos, but there’ll be another time.

I spent so long running around with the horses that I completely forgot how damn sore I was until we got home. At which point I sooked a little myself, had a hot shower and my usual painkillers and moped in front of the PC for a while. I couldn’t even finish my dinner at that point, so I eventually climbed into bed and snuggled the snot out of manthing while I played Pokemon. At 5am, my body decided to give me the “Oh god why” wake up call that involved hobbling my way to another hot shower, stuffing down more painkillers and curling up in a little ball next to manthing and leeching all the warmth I could off him.

Thus far, today hasn’t been much better. I didn’t sleep well, so I’m all over the place, but I got up and pottered about for a while before I was told to go back to bed before I had another major pain flare. Unfortunately, I wasn’t quick enough and I had just fallen asleep when my hips started screaming worse than before, so I’m sitting here right now with painkillers swimming about my eyeballs, pleading with my body to let them work quick enough and generally trying to distract myself until they kick in. On the upside, it’s a bloody beautiful day here today, warm enough for me to not hurt from the temperature for a change (just from everything else instead!) and later on tonight I get to see a bunch of friends for a gaming session, so that should be heaps of fun 🙂 It’s all about the little things!

Thanks for reading! You know, before I started blogging about my adventures, I would never have believed so strongly in the support of strangers, yet now I find myself smiling with the few comments I get and really trying to keep my word when I say I’m going to update because I know someone out there is going to read it 🙂

On letters and being a Guinea Pig

This has been quite an exhausting week. I’ve been keeping tabs on and helping out my sister/best friend who is about to have her baby (can anyone say excited auntie, much?), been dealing with what is now a 3-week-long pain flare, working on business stuff and then having to spend an entire day dealing with the doctors. On the upside, I have some achievements to show and something rather interesting to share.

I finally got that letter from the specialist I saw back in April. When I was there, I was told I was supposed to start a new medication ASAP so by the time I go to my appointment at the end of next month, I’d have a few months on the tablets and we should be able to see a definite answer either way as to whether it is actually helping to manage the pain. Unfortunately it’s now the beginning of October (I actually had to check that) and I need to have at least a 3 week transition period from one medication to another so the chances of be getting a solid answer is pretty damn poor. Once again, it’s another one of those prescriptions where it ‘might’ help, but we really just have to wait and see while I play Guinea Pig.

On the upside, I thought I’d share some of the letter I got from the specialist, just in case some of you find it interesting or can relate, or even just want to know the nonsense I have to deal with while fighting for a diagnosis. Obviously, some bits have been changed for privacy reasons.

To start, I have a wonderful list of shit wrong with me:

  • Arthralgia/myalgia under investigation
  • PTSD
  • Anxiety
  • Depression
  • Polycycstic Ovary Syndrome
  • Endometriosis
  • Benign Hyper-mobility Syndrome

I had the pleasure of reviewing Miss Abigail in Rheumatology Clinic today.
In our last Clinic review, we commenced Miss Abigail on a trial of Prednisone therapy to see whether this could help with her joint symptoms.
Abigail unfortunately reports that there has been no appreciable symptom relief with Prednisone and in fact reports that the Prednisone may in fact have made her symptoms worse.

I’d like to take a moment here to stamp my feet up and down and have a bit of a tantrum. “Worse” doesn’t quite cover the fun of Prednisone. For those of you that have been on it, you know what I’m talking about. This ‘delightful’ little bastard of a tablet has the ability to kill you. While most medication does have this side-effect if you take too much or whatnot, this smarmy little bastard outright tries to kill you. It actually stops the production of a certain chemical in your body that YOU NEED TO LIVE.

English: *Drug Name: Prednisone 20 MG Oral Tab...

English: *Drug Name: Prednisone 20 MG Oral Tablet Ingredient(s): Prednisone Drug Label Imprint: 5092;V Color(s): Orange Shape: Round Size (mm): 10.00 Score: 2 Inactive Ingredient(s): ShowHide fd&c yellow #6 / lactose monohydrate / magnesium s… fd&c yellow #6 / lactose monohydrate / magnesium stearate / microcrystalline cellulose / sodium starch glycolate Drug Label Author: Qualitest Pharmaceuticals DEA Schedule: Non-scheduled (Photo credit: Wikipedia)

The longer you’re on it, the less of that chemical you have in your body until POOF! you are now entirely reliant on the dreaded Pred to synthesize this chemical in your body. Side effects of being on Prednisone while in MY body include generally feeling like the Devil’s fiery butt hole, being constantly exhausted, feeling like you have the flu 24/7, being too tired to sleep, memory loss and decline of cognitive function and not being able to remember simple things like what day of the week it is, whether you’ve turned the stove off or not and what your name is. The one god damn symptom I DIDN’T get was some kind of euphoria you’re supposed to get on the first week of this kick-in-the-balls. Go figure. Oh, and if you stop taking it suddenly, you experience severe deadness. Have fun!

Anyway, back to the letter.

Since our last clinic review, Abigail reports ongoing generalised myalgias and arthralgias  that are migratory in nature affecting muscles of the shoulder girdle, limbs and back.

Look out, arse hats. This flock of fuckery is lose and migrating through my body like the bitches think it’s Winter!

She reports being invariably functionally impaired with them. On some days she is able to push through the pain and work at home and at her business and on other days being very much limited by her pain. Abigail reports the pain being present at rest, be worsened with movement and on occasion being unable to stand with it.

You’ll notice that I’m deliberately biting my tongue on the terrible grammar and punctuation of this specialist. Everything he’s thus far described, though, falls in my category of “not being a bitch and just having to get on with life if you want to eat”. They don’t reference the days when I need assistance using the bathroom on my own, or the days when I’m so exhausted from the pain that I almost fall asleep in my dinner.

[Skipping forward through the bits about palpitation and general manhandling of the patient that made me want to bite the specialist]
A review of Miss Abigail’s recent bloods demonstrates a continued mild elevation of inflammatory markers with an ESR of 13mm/hr and a CRP of 18.5mg/L despite current Prednisone Therapy.

Links to abbreviations for science! What this means is that my body is going batshit for one reason or another. It SHOULD have buggered off the inflammatory markers the moment I started the Pred. That’s what the medication is designed to do. But no. I’m special.

The letter goes on to say that they suggest that I MIGHT have Fibro because they’re clutching at straws here and have no real idea what my body is doing, but they don’t want to give me a diagnosis and would much rather switch me over to another fun Antidepressant because it’s been shown to kind of help people with Fibro. Now, I’m all for trying things that help at this point. I’m willing to do almost anything, but it would be nice if they could make up their minds as to what medication they’re going to pump me full of first.

What this giant circus boils down to is that, I’m likely to be having bigger mood swings than a menopausal woman at a Justin Beiber concert in the next few weeks. In order for me to get ON to these new meds, I have to reduce the dose of the present antidepressant I’m on and get it all out of my system. This means I’ll have a week of not having any kind of chemical in my system (aside from the usual painkillers) before I start this new stuff. I’ve been told that it’s the equivalent of the bigger, angrier brother to the stuff I’m already on. Already sounds like fun, doesn’t it? I’m also likely to be having massive pain spikes as my body gets used to not being able to depend on an external source for controlling the level of chemicals in my brain and will go through everything from being completely exhausted, bawling my eyes out for no reason, getting the munchies and massive anxiety attacks to feeling like I’m getting electric shocks from inside my own body. This can only mean one thing.

The next few weeks of blog posts are going to be incredibly entertaining 😛