My phenylalanine experiment

Feeling hopeless and unmotivated…what the…? I always had the motivation to do my daily paced physio’. For yeeeaaars. It’s towards my quality of life through pain management so why wouldn’t I?

Brain chemistry may be part of the problem, though….

Brain power

When we’re chronically ill we tend to get through a lot more neuro-chemicals than we used to. There are constant symptoms and sussing how to manage them as we go along – should I attempt this now or later? If I do it now then this, but if I do it later then this. If I take that med/supplement or eat some food or do that physio first then it will impact it like this or with those variables maybe like this. So I’m thinking maybe I should do this but with these provisos and that back-up and constantly monitor symptoms and be ready to adapt at any given moment as things pan out…. etc etc. There is a huuuuge amount of chemicals getting used up just trying to do the most basic of things. Then if we try to do anything other than the usual getting through the day stuff we decline faster and take longer to recover.

Back when I was studying I found that I will consistently lose my brain if I use it. Not the adage we more often hear of ‘use it or lose it’ eh? The more I use it (more time, more intensity, more challenge – any of those will do it) the quicker I’ll lose it and the longer it will be down for. My fellow CRPSer and blogger, Isy Aweigh, employed her nurse skills and suggested I need more dopamine to help my brain replace the neurochemicals I was using up. To create more dopamine, I need a source of phenylalanine. Us humans can’t make it internally, so we need it from food sources. I’m a veggie so meats are out, but aged cheeses are another source. And they helped. Significantly!

Dopamine.JPG

Created for this post by the Hypermobile Hobbit

It’s several years later though and my neuro’ dysfunction has been telling my immune system to react to all sorts of things, one of which is cheese so that’s that one out of the window!

I was chatting with the same pal the other day about my uncharacteristic lack of motivation and overwhelming sense of hopelessness about how I simply can no longer Brain long enough to do the research work required to gain any useful health support from medical practitioners. Guess what I might need? Yup, dopamine! Seeing as I’m still a veggie (that’s not gonna change) and that I can no longer eat any solid cheeses I’m quite possibly deficient in the phenylalanine that I need to manufacture the required dopamine. It turns out there’s a supplement for it, who knew?!

Phenylalanine.JPG

Created for this post by the Hypermobile Hobbit

After doing a quick bit of research (very quick, my brain falls over soooo fast these days) I found that the natural source found in foods is L-Phenylalanine. It’s not only used to make dopamine though, it’s also used to make other neurochemicals: adrenaline (epinephrine) and noradrenalin (norepinephrine) but it would be weird if balancing neurochemistry was easy, right?! We always need to consider all potential impacts and contra-indications (negative effects on med’s we already take) of any new med or supplement before we start taking it. In my case my ANS-balancer is an SNRI which inhibits the re-uptake of norepinephrine to reduce my flavour of dysautonomia. I was doing well on it until this potential phenylalanine shortage so rather than mucking up any previous balances, the supplement should (if it’s needed) return my neurochemicals to their happier levels.

There is also the artificially manufactured D-Phenylalanine which may well help with the production of dopamine as well, but it looks like the science isn’t completely in yet. It may help with pain however, and the side effects do not outbalance the potential for me personally so the standard mixed DL- supplement looks like it’s a Go.

Symptoms of a deficiency in phenylalanine pretty much describe my current state. Confusion – ohhhh yeah. Lack of energy – in the extreeeme. Decreased memory – significant, noticeable and upsettingly so. Diminished appetite – er, kinda, less appetite and depressed so I’ve been eating sugary stuff on hand and am now unable to fit into my shorts this summer. Possibly any summer. My first significant over-waistband roll. Oops.

I also found out that more than 5,000mg of DL-phenylalanine per day can cause nerve damage. Soooo I’ll be taking less than that then!

I ordered some DL Phenylalanine (a combination of the natural L- type and the manufactured mirror imaged D- type) from my usual reliable supplier of quality supplements and I’m gonna see if it helps me at all. Recommended is 1 x 500mg tablet per day. Not sure if that amount is gonna give me much Brain Time but it’s a place to start. I consulted one of my science whizz friends (fellow blogger the Hypermobile Hobbit) and she has raised a very important question – what’s the ratio of D- to L- in the supplement I have? Good point. L- would be more readily used by the body, so I’ve asked the supplier and am waiting to hear.

First, I figured I should list my current issues so that I can look at a before and after picture. Here we go, this is where I’m at:

Before, circuits

  • Utter fatigue, all the time
  • No brain. Like, really no brain. I struggled to order two photo prints from the usual website we use. I managed two and then couldn’t understand the website anymore. Had to ask Magic Dude to take over.
  • When I’ve got no brain it kinda hurts. Sort of like a headache but different.
  • No idea what the heck is going on a lot of the time, can’t understand concepts, sentences, sometimes takes me awhile even to figure out the meaning of individual words.
  • Memory shot to pieces. Have got used to not remembering anything now. Whole events/days go missing. Previously I would randomly forget ever seeing entire films but it’s so much worse than that now. I even think of something like ‘I must tell Magic Dude this’ and instantly it goes – I have lost the thought less than a second after I had it and he’s sitting right theeeere, it’s not like I had to remember it for any longer than it takes to say it. Really distressing.
  • No motivation whatsoever. Just an overwhelming ‘it’s too hard to sustain’ and ‘what’s the frickin’ point, anyway?’
  • Endless migraine. Relentless. Can’t do anything that doesn’t send it soaring except for prop myself up on the sofa in front of the laptop raised on its over-my-legs stand and there’s very little I can do in that position because I mostly have no brain.
  • Want to bury myself in something creative but not enough brain to finish any of multiple blog posts I’ve started over time. Tried sewing and it’s great but it sends the migraine soaring so can only do that for a short while once a week or so if I’m lucky.
  • Lots and lots of physical health symptoms that are hard to grapple with but I’m not listing them here as that’s not the focus so much as how I’m dealing with them (or not). I’m down in the dumps about coccyx pain being permanent, about near-fainting all the ruddy time, about not being able to choose to do anything useful or anything nice/fun, about not being able to go to Tai Chi classes or even manage any at home since my fall injury a year and a half ago. Yeah, really really down for a long time now. Not like me at all but I’ve been avoiding everyone online because communication has become so hard. I’m on a veeeery long waiting list to see a neuro’ and trying to cope in the meantime. Coping isn’t viable so I’m aiming for ‘exisiting’. That’d be a win, right?
  • Being near fainty all the time means I’m not safe to drive. I can’t get out of the house at all. I am completely independence-free. I managed to drive round the corner to collect prescriptions a couple of times in the past year or so but it took all day to try to get my body functional enough for those few minutes of driving and then there’s the lengthy negative health impact of that to work through afterwards.
  • Coming up for 19 years with this neuro’ condition and this will be the first time I’ve *ever* been referred to see a neuro’ – see why us CRPSers feel so flipping hopeless at times? It’s hard bloody work trying to get basic care because wiring issues are barely even touched on in medical school. Plus – most neuro’s are brain neuro’s and don’t deal with wiring anyway so this eventual appointment will either be really helpful or an utter waste of time and end of the road on any medical help for me. I could cry. But I’m too numb or dead inside or something.
  • Footnote: Magic Dude is a, er, magic dude! He’s been getting me out of the house whenever he can in any ways he can think of. I have noise reduction ear-plugs which reduce volume and help my processing and migraine management. So he’s taken me to the cinema, a concert, the Outdoors. We’re sick of sitting in coffee shops but that’s all I can do most of the time. But coffee shops exist within garden centres so that adds some extra interest (and buying plants is a temporary retail high). I’ve posted pics for my friends of anything I’ve seen outside the house to share that moment of joy but realise that doing so hides what’s really going on. But there’s nothing they can do anyway, and I’m struggling to read and understand stuff as well as piecing words together to form a reply, so messages can actually be quite stressful if they require a reply.

 

Oh. I’ve just re-read that list and realised that it’s basically what was happening when my Mum was trying to suss stuff out, got totally wrong concepts about me and disowned me despite my repeatedly saying that I didn’t understand what was going on. Okay. Arse! I’m back there then, eh? Big neuro downslide. Right. I came back a fair amount from that one, let’s see if I can pull the rabbit out of the proverbial hat this time as well with more help than just flukey luck back then when I found I improved a tiny bit from (unknowingly phenylalanine-ish) cheese sandwiches!

rabbit out of hat

 

Depression is kinda like drowning – it doesn’t look like what you think it looks like. It’s smiling whenever I can, making lots of jokes, going full-on distraction when I’m alone (Lord of the Rings Online), pretending I’m okay just to try and get through until the appointment that’s many months away, yet to be scheduled and which might utterly let me down.

But it might not. ‘Just keep swimming’, right? Ugh!

depression doesn't look like what you think it looks like

Next morning: I just re-read this to make sure it made sense then opened something else up on my computer. I felt like had been doing something else but couldn’t remember what and it was really bugging me. I had been re-reading this. Like, a second before and couldn’t remember doing it. And yet after writing this post yesterday my brain accessed the disowning distress from years ago, pulled Bjork’s ‘State of Emergency’ out of it’s vaults and sang it to my dysfunctional fight or flight self til 3am. Gawd this supplement had better help!

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Okay, the DL phenylalanine arrived yesterday: 25th  May 2018.
Let the experiment begin.
I’ll come back and add how this list looks in a couple of weeks….

 

After, circuits

Day 1: Shortly after taking the supplement I found myself skim reading two articles in the Psychologist mag, whuuut? Then my brain keeled over, back to ‘normal’.

Day 2: Already using my brain trying to post this when I took the tablet. That weird head tensiony not-headache going on. Not sure I’ll get much impact this morning.

…..

20th June 2018

Okay. Phase 2 started about 5 days ago. Here’s where I’m at:

No major changes on just one tablet per day so phase 2 is an increase to two (one after breakfast and one after lunch, though with health varying these meals vary pretty wildy timewise).

However, I didn’t mention something in my list of symptoms above because if I listed all my symptoms you’d fall asleep trying to read them! Yet it seems to have improved a bit since taking the phenylalanine. No idea yet whether this is causal or coincidental, time will tell.

The unmentioned issue is that since my fall injury I’ve been reacting badly to certain things. I experience near-syncope, nausea, facial drooping, limbs powering down, slurring, eyes flickering independently of each other, dystonia in my legs. The triggers all seem to be when there’s too much for me to process i.e.:

  • motion (in a car, worse on narrow and/or windy roads, first person gaming)
  • flickering lights (florescent, daylight through trees when I’m travelling)
  • audio input at the same time as motion impacts harder and quicker (e.g. music, radio, audio book)

I’m hoping the supplement is related to the improvement in how well I cope with motion. All I can do is keep working through phase 2 and see what happens.

 

Photo Challenge for CRPS Awareness, Day 21

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 21 – A picture of something you wish you could forget

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The good memories will always be cherished in my heart, but the pain of loss is with me every single day without exception. Not that I dwell on the pain of loss, in fact I focus on the positive every single day. Over time I have improved my ways of coping with grief and confusion. But it takes time. And it never truly leaves us. We learn to live with the grief, around the grief, despite the grief. But a loss is a part of who we are as much as a joy is. It can help us to become stronger, wiser, more empathetic. It can help us to learn the hard lesson of letting something go even without really understanding what happened. To have to move forwards with no closure. To find a way. Our own way. To revisit who we are because no matter what others may incorrectly think of us it doesn’t change who we actually are. It can hurt us, spin round and round in our heads driving ourselves nuts trying to figure out what happened, but what someone else thinks does not change the reality of what we stand for, what we believe in, who we actually are. In fact it gives us the opportunity to be even more ourselves, in a way; at least that’s what helped to get me through… The process of looking at who I am made me realise that whatever I do, whoever I am, others can still see me totally differently. They can still get me wrong. And if that is the case then why be for others if they’re not going to see who I really am anyway?

So I decided to be as me as I wanted to be….

I set up the weblog to help fellow patients, I started the CRPS research to try to help through that route too. I also started learning Tai Chi for my own physio’ and my own personal enjoyment of learning it, too. I am more openly me than I have ever been before. And all things, good and bad, led me to this. I like being me, I like myself as a person, and I am proud that my morals are so solid to the core of my being. Whatever others think about me, even strangely wrong stuff (easily done when I’m in a neuro’ meltdown after all!) I am glad to be the me that I know I am and I want this life to be worth something. To make some kind of a difference simply for it’s own sake. To be useful to others during my life. When I am old I want to know I was true to myself, that I loved and helped others, and I want to feel as calmly content in my heart as this makes me feel now. But the grief will ever be there. When I first wake in the morning, when I am alone making a cup of tea in the kitchen, and more keenly on special occasions.

But despite the loss, I at least feel less distress these days. I feel sadness every day, but I am coming to accept the lack of understanding. Sometimes that’s just the way it is. But when people who love you end up thinking wrongly of you, it hurts them as well as you, and I just wish I could reassure them that it’s okay. That I’m not the person they thought I’d become, that I’m still me, and that I still love them as much as ever. I’d like to take away the pain they must feel so that they don’t have to feel it. To be able to explain the CRPS neuro’ stuff that scuppered my processing and comprehension, and how the level of brain ability varies with my emotional state.

I felt such pain that no words can describe it. I imploded utterly, I’ve never been so broken or so full of questions that I’d have no answers to. Did they implode, too? Did it hurt this badly for them, too? I wish I could forget the pain, and I wish they could, too. There was no need for it, no basis, just mucked up neuro’ disease and mis-matched contexts.

I didn’t know what picture to use for today’s CRPS awareness challenge, so I clip-arted one into existence. This is a vague representation of the vortex I found myself in.

Pain of confusing loss, broken heart

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Photo Challenge for CRPS Awareness, Day 19

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 19 – A picture of you and your family

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Like many CRPSer’s families, mine is a bit sparse these days. 😦

Various problems occur within families with this condition such as…

– disbelief about pain levels (the ‘not real’ error)

– disbelief about the genuine body function requirement for painkillers (the addict error)

– a health picture that is just way too big to comprehend

– a health picture which changes over time as we find out more about it (the changes in our own understanding can make our condition seem less reliably real to others sometimes)

– just too severe for close ones to cope with (seeing a loved one in pain can make some people distance themselves)

– or, as in my case, neurological deterioration is noticed but not known to be a serious part of the whole at the time. Misunderstandings are pretty much a dead cert’ when the CRPS neuro-psych’ deficits are in the mix. (a two way ‘what the…?’ confusion which is tough to resolve when memory and processing are compromised). (I wrote a bit about experiencing cognitive changes here).

These are just a few examples of how patients lose their loved ones when they need them most. It’s also why we are so grateful for our fellow patients around the world – they understand the condition and are there for us when many others just cannot be.

I was initially shocked at how many people had also lost family members, but I have come across this so often now through talking with fellow patients that I now sadly see it as a common part of living with the condition. Those who stick with us, or at least keep in contact, are a rare breed. So, if you’re a family member of a patient, please know that you are a rarity and that no words can truly suffice to describe how much you mean to your loved one with CRPS. In short, you totally rock, and on their behalf I truly and hugely thank-you from the bottom of my heart, xoxox

My Family

And to those fellow patients who breathed a sigh of almost-relief whilst thinking “phew, it’s not just me”, yes – you are not alone my lovelies, and it is okay to talk about it.

This kind of thing can all too easily become a taboo subject, especially when us patients don’t really know what happened anyway because it’s really tricky to talk about something when we don’t really know what happened ourselves. But I don’t want to you feel alone, and I don’t want you to have no-one to talk to about it. A subject is only taboo for as long as we allow it to be, and allowing it to be can get in the way of healing. Today’s challenge was so specific I have found myself breaking that taboo. I hope it may help some of my fellow patients out there that I have done so, xox

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