Charting your progress

One of the best ideas I ever came across was keeping a pain chart to track your recovery. The reason this is so helpful is because your definition of this is "the worst it's ever been" may change over time. It is VERY easy, on a bad day or pain flare-up, to be terrified, to think "this will never go away!", or "I'm getting worse, not better!", and to overlook the fact that, as bad as the pain is now, maybe it used to be worse. Which should in some way make you feel better about those invisible nails being driven into your tongue. LOL.

OK, I'm not gonna sugarcoat it - there are going to be really bad days, or pain spikes as I call them... but over time, the peaks will very gradually be lower. I don't know if they ever go away completely. I'll let you know when and if it happens for me.

So here's what I did: I developed a very simplistic graph, an X,Y axis, with 0-10 (indicating pain level) going up the side and the date going across below. Every day I indicate the pain level I am experiencing. I have this diagram of mountains that have gone from looking like the Himalayas to the Rockies to lower, gentler mountains, like let's say the Appalachians...for what it's worth, this gives me peace of mind and reassurance that, even though it doesn't feel like it, things ARE improving. It just takes for freakin' ever....

You'd be surprised how something so silly can really help. When I am having a bad day now, I look back and realize how much better "bad" is than it used to be, (how much higher the number was on the pain scale) and it gives me hope that this trend will continue. Though, as I've said before, this recovery is not a linear thing...there are many ups and downs, one step forward two steps back, and many days you'll wonder if it will ever get better. It will.

It's also useful to keep track of what may have prompted the pain result each day, especially if it's a particularly good - or bad- day.... Loud? lots of talking? Stressful day? Rainy? Cold? Windy? New meds, vitamins, or treatments? What you ate, drank? etc... Over time, you should be trending downward, and your spikes shouldn't be as high.

Things have also changed for me, whereas at the beginning I had a clamped feeling on the left side of my tongue, and my left cheek felt constant pressure, as if someone was punching it, and the tongue burned from tip to back along the left edge... now the pain on the tongue is more widespread - all over- and not as severe most days. All of my original symptoms have lessened, while some new ones have appeared. But the new ones aren't as high on the pain scale. Still annoying as crap, but historically speaking, not the worst it's been.

If you try all the vitamins, meds, and alternative therapies I have recommended and don't notice any discernible improvement after 60-90 days, you need to see a specialist, ASAP. The longer you wait, the worse it is, because your brain learns to live with this neuropathy, and comes to think of the pain as normal, instead of no pain being "normal".

Meanwhile, get yourself some Oragel, some gum, and whatever else works for you, to help you cope during the tough times. You will get through this. Hang in there.