Thursday, 3 September 2015

Peripheral neuropathy

*There is plenty of information about PN online and if you so wish to find out a bit more on peripheral neuropathy click here or you can watch my first ever video which explains more about the science behind it (from what I remember)*

What I want to talk to you about is my experience with how it feels and the pain I experience, what it feels like living with it. Although to say I'm living is pushing it.
Peripheral neuropathy can affect any of the nerves the furthest away from your the peripheral nervous system. So toes and feet but also fingers and hands as well.

You may have gathered from my videos that my feet hurt. Quite a lot. But there isn't just one type of pain no, NOOOOOOO THAT'D BE TOO SIMPLE. There's the constant nerve pain, the pain that gets worse at night, pain from trying to walk or stand (pressure), pain from temperature changes, the osteoarthritis in my ankles and I think that's it.
At the beginning...
It came on very suddenly and started off feeling like pins and needles, but constant and painful. that lasted a few days and then it turned into pain. It was unlike any pain I've ever felt before, it was always there but at about 5 PM suddenly kicked into overdrive and through the night would get gradually worse until about 6/7 in the morning when it would start to settle down. bear in mind this was the 3 months of not eating and I was throwing up blood through the night too. So times were not fun.
The pain felt like I was stood in blocks of ice whilst being electrocuted, if that makes sense.
Lilys impression of me sums it up pretty well....
Of course it doesn't unless you've felt it, it won't because it's the weirdest fucking feeling and god forbid the slightest touch on them! That was a whole new level of excruciating! At first mum was trying to massage them (literally the lightest touch) and it was agony. This was all in the space of about 3 weeks it had progressed. From then on the pain progressed rapidly, and by Christmas day I was having to bathe my feet in warm water every morning to try and bring them back to life. Which although warmed them up hurt them in a different way as the type of nerve affected is the small fibre nerves which is affected by rapid temperature change so I had to warm them slowly as if they are too hot or too cold its excruciating (meaning my days of piping hot baths are over). By this point, I was also unable to stand up without anything on my feet because the pain of anything touching my feet horrific. Electric shocks of horrific. Someone accidently touched my feet with a newspaper once and I immediately screamed and started crying, the pain was just unbearable, they didn't understand that it felt like someone had just hooked me up to an electric chair whilst dropping a tonne of bricks on my feet and simultaneously shooting liquid nitrogen through my toes.
I was then referred as an emergency to a neurologist and taken into hospital for a series of infusions and tests so confirm their theories. It turned out that whilst my b12 levels were normal my MMA levels which your body requires to absorb the b12 was something like 15 times the normal range meaning my boy wasn't getting any and as your body stocks b12 for a year this was clearly not a quick fix. In terms of getting my b12 boosted I require a monthly b12 shot I've had 2 infusions and a daily multivitamin.
But pain is just one part of the equation
If you're unlucky then you can lose movement and or feeling. I lost both. My feet developed contractures which is where the muscles shortened and my feet bent over at the wrong angle so even when trying to work through the pain when standing or walking they're bent at the wrong angle and I can't pull it to the correct position myself as I've lost that ability. I've lost movement and feeling in a few of my toes and parts of my feet, touching them even lightly is excruciating, although to be honest I'm used to it now and I just deal with it. I hold them sometimes as a comfort thing and also to try and get them used to the feel of something touching so that the pressure of standing and walking and wearing socks and shoes isn't as painful (doesn't really help tbh but I like holding my feet, feels like a protections thing) I still can't wear shoes only my stupid oversized primark furry boots:(

Due to the fact that I've not been able to walk since I left hospital (which is another post entirely, those stupid wanktards ) I've had to get round by crawling on my knees and FYI adults knees aren't meant for crawling. I've developed bursitis in my knees which is where your knees fill up with fluid and they're incredibly painful and swollen. But it's how I get around 90% of the time.

 Part of the problem has been in that when I was being fitted for my instruments of torture walking braces I developed a fibroma which is a tumour that can develop through trauma, on the base of my foot. Now it's only small but on top of it started growing a hematoma which is a lump made out of blood which wasn't so small and was incredibly painful. I don't know why I first developed it either because of the trauma in hospital or having the braces fitted is likely but it meant that any weight through my feet meant it got bigger and bigger and more painful. I had to consult several surgeons who all said it was too risky to operate.
aforementioned instruments of torture
So it was a case of either where the braces the lump gets bigger more painful to a point where I can't even stand up, don't wear them my feet are in the wrong position there's still pressure on my feet still pain, or stay off my feet AGAIN completely crawl everywhere and see if it goes down. Which is what I did as mentally and physically I just want to curl up in a ball anyway so technically it was kind of being prescribed? Anyway after a few months it FINALLY started to go down, the hematoma is mostly gone, the fibroma is still there it's there for good and I know no surgeon will touch it. I had a plastic surgeon booked to look as that was my last hope of removing the lumps but by that point it had started to go down so I cancelled it. If I wear my braces it starts to swell up, so that means that any standing or walking I do is on bent feet which is incredibly painful both nerve wise but also on arthritic ankles.
because of the problems with my braces and the lumps I had to make a decision a few months ago, start wearing them again and risk the Hematoma getting bigger and surgeons refusing to operate and being in a position where I couldn't put any weight through my feet but having at least gone someway to trying to correct the contractures. Or go without the braces. Use my crutches, take as much weight as I can through my arms and just live with the fact that my feet are bent and the fact that walking on them building up the muscle by walking on bent contractures is just going to make it worse. I chose to do the second as I couldn't risk the hematoma getting bigger as it also puts pressure on the surrounding nerves.
So I can do my versions of standing and walking, it a kind of shuffle as its fucking agony being on my feet but I do it if I have to. It's not only physically agony but mentally too knowing that every step/shuffle I take is a kick in the teeth walking on bent fucking feet as I've only gone backwards since I was admitted to that hospital and it's own to them and all the mistakes they made NOT PN. So I mainly am only on my feet around my room on my crutches, when I go to the toilet or sometimes downstairs I'll stand out of my wheelchair with my crutches. Most of the time I'm on my knees though, but because of the bursitis and joint pain sometimes my knees are too swollen to kneel on and I'm stuck unable to move from my bed.

Pain Relief
Medication wise I've tried everything there is going for the pain, at first I was resistant because strange as it sounds I wanted to know if it was getting better by knowing how much pain I was in. But then It was just give me the drugs NOW. Sadly nothings helped and I've tried everything up to the strongest opiates on the planet, all they do is send me loopy and trigger migraines. One thing that has helped the pain getting any worse, which I've talked about in my herbs spices and supplements you can't pronounce post is alpha lipoic acid.

People have asked if there is a 'cure' for my feet, if they will ever be fixed. The simple answer for that is no. The nerves affected died. Simple as. The pain at the beginning was them dying. They can't come back, I can't get the feeling back I've lost, I can't regain movement in the bits I've lost. It was described as the same type of thing as when someone has a stroke and loses movement in a part of their body. This isn't atypical with PN so  I'm not sure why this happened to me but it means I can't move my smaller toes, (and I used to be able to brush my hair by gripping my hairbrush in my feet so had extra grippy toes) and I can't pull my feet into the position they should be in, so not bent inwards which is how the contractures in my feet developed. I can try as hard as I like but no matter how much I pull and pull my feet into the right position it doesn't move. sometimes a few minutes later it'll go into spasm and that's about the most movement it'll get.
Highly amusing if it happens to kick a medical professional in the nuts, not so amusing when I just want to fucking walk.
I have funny little twitches when certain part of feet are touched (not that I'd recommend doing that because OW). The reason I can't walk isn't directly because of the PN as I was still trying to walk on my crutches until I was admitted to hospital, its more because of the contractures that got worse after the hospital fucked me over and because my joints have gotten so much worse since I then.

 I've tried to be as descriptive as possible when describing the pain in this post not for sympathy or pity, but for one reason and one reason alone. No one should have to go through this.
No one should starve themselves to the point where they're reduced to the crawling around like an animal, where they're in pain 24/7. 
All I've ever wanted to do was to raise awareness about the conditions that I've got due to my ED in the hope that maybe it'll make people realise what they're doing to their bodies and realise that they're not indestructible and they're worth more.

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