dawnmist: My homebuilt gaming keyboard - version 1 (Default)
[personal profile] dawnmist

This year (after almost 23 years of health issues), I was diagnosed with the auto-immune condition "Sjogren's Syndrome". Usual symptoms include dry eyes & mouth, fatigue and muscle pain. In addition, about 20% of people with Sjogren's end up developing (or even starting with) some form of peripheral neuropathy.

In my case, I am one of the 20%. I've got Small Fibre Neuropathy, affecting my feet and legs (up to the groin), and hands and forearms (up to the elbow). There's also been some odd sensations on the face at times (dentist-injection-like numbness/tingling), and having had years of the "stand-up-get-faint-dizzies" and gut trouble I've got some suspicions that there is also some autonomic neuropathy there too. While I've had nerve conduction tests, I haven't actually seen a neurologist yet...but I do have an appointment for mid-January so I'll finally be seeing someone soon.

I've read descriptions online of "burning pain"...and just calling it "burning" doesn't really touch the surface of it. In the last 12 months, I've learned that there are a huge multiple of different types of burning. With Small Fibre Neuropathy, you get to experience it in a multitude of ways. From my experience so far, there's been:

  • Standing in a bathtub of water that was too hot
  • Scalded/steam-burned
  • Heat rash
  • Branded by a hot oven pan
  • Sunburn
  • Ropeburn
  • Carpetburn
  • Chilli-on-the-lips burn
  • Held-ice-for-too-long cold-burn
  • Touch of an open flame on the skin
  • The feel that your skin is melting and dripping like wax down your legs
  • Fell over and skidded on asphalt abrasion/stinging/burn
  • Bruised/mashed
  • Scrubbed with a scrubbing brush to remove engine grease
  • Abraded
  • Sanded (as in someone used sandpaper on your hands to rub the skin off)
  • Tingling
  • Prickling
  • Crawling
  • Stinging
  • Slapped

It's very common to be experiencing several of those in different parts all at the same time, for example at the moment the edges of my palms are skidded on asphalt, the backs of my hands are sanded, my hands overall are stinging, several fingertips are bruised/mashed, my feet are prickling/crawling/scalded, my lower legs are stinging/scalded, my knees are sanded/scalded. To say it's uncomfortable to deal with is to grossly understate the issue!

There's some things I'm grateful for. The soles of my feet are currently still ok. They're tingling, but I can stand and walk without triggering nerve pain in my feet. I know that's not always the case. My GP/Rheumatologist/Pain Management specialists all believe me - it helps that my bloodwork screams Sjogren's, and that the progression for the nerve pain has followed one of the typical Sjogren's neuropathy patterns. I understand what is happening and why - it'd be worse if I was getting this pain and had no idea what was causing it. And I have a superbly compassionate husband who is doing the best he can to help (despite having Fibromyalgia himself), and a job in a workplace that is willing to help make sure I can still work. I've been able to tolerate the medications attempted so far with few side-effects (mainly mid-afternoon sleepies, and constipation).

On the other side...the pain in my hands is a huge problem. Worse far than in my feet & legs was. You have to use your hands for everything. I can't hold a computer mouse anymore (so my custom-built gaming keypad isn't much use for gaming at the moment). Even using a pen can be hard. I'm still able to type...but mainly because I type on my fingernails. The palm rests on the keyboard cause a lot of asphalt-scraped pain. Holding a steering wheel to drive causes the pain levels to climb. Even holding my phone to read a book becomes a problem by the evening. There's no cure and no way to slow/stop my immune system's attack on my own nerves (though there's interesting experiments with IVIG/Benlysta/Rituxan/Interferon Alpha happening in the US). And my body keeps throwing off the benefits of new medication or increased doses of existing medication within about 2 weeks of the addition.

So far, I've tried:

  • Lyrica - I'm currently on the max dose (600mg/day)
  • Tramadol - I'm also currently on 300-400mg/day (max is 400mg/day)
  • Duloxetine - 30mg/day (newly added 2.5 weeks ago...it gave me some peace for 1.5 weeks and then the pain started breaking through again).

That's for the nerve pain itself. On top of that, I'm on Celebrex and Plaquenil for the inflammatory side of Sjogren's, and Norethisterone for hormonal issues. From taking nothing most days 12 months ago, it's expanded to taking a whole lot of stuff every day. Due to the Sjogren's, I can't really take the tricyclic antidepressants that would normally be the first-line medications to try - they're too drying when I'm dry enough already that I often cannot swallow without taking a sip of water or eating something very slimy.

But the pain is still increasing. Steadily. Inexorably. Relentlessly. This year has felt like that image from Alice Through the Looking Glass where the Red Queen was running frantically just to stay in the same spot. I feel like we've been racing with medications to keep just ahead of the point where my hands become unusable. I know that point - I actually did reach it briefly earlier in the year. I don't want to return to it if I can avoid it.

My Pain Management specialist wants to look at whether modifying my car could reduce the pain from holding the steering wheel when driving. I'd personally prefer he just reduced my pain, and left my car alone.

He is trying that too. I'm booked in to go in for an 8hr Ketamine infusion tomorrow. The hope is that it'll reduce the volume on the pain enough to allow reducing my current medications - so that when it increases again, there's actually something that can be done. I've tried searching online to see if people have had any success with that...but there's not all that many personal accounts related to the type of neuropathy that I've got. Which is why I decided that I owed it to the next poor soul that was searching for the same information to write about my experiences.

My fear is that, because the nerve pain is coming from actual damage still occurring as my immune system attacks my nerves, the Ketamine will turn out to be an expensive waste of time. Or possibly worse - it works for ~2 weeks (like everything else so far has), then fails again - I cannot afford to go back for treatment every 2 weeks! But I felt it important to actually try it - because if it does work, it may buy me up to 6 months to find an alternative...or to repeat it, so I can keep functional enough to stay working while waiting for a better long-term solution to be found. Given 5 years, 10 years, my hope is that some of those interesting trials I've been reading about will have been successful enough to become an approved medication for my Sjogren's and will stop the immune attack on the nerves - allowing them to heal and cutting the pain off at the true source. I just need to be able to hold out until such a time arrives.


dawnmist: My homebuilt gaming keyboard - version 1 (Default)

February 2017


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