My Neuropathy

Where do I begin?  My neuropathy began twenty years ago when I had gone from gestational diabetic to type 2 diabetic.  During my pregnancies I controlled my blood glucose with insulin and oral diabetic meds.  I have kept it under very tight control most of the twenty years.  My aic fluctuates from between 5 and 7 but never higher.  I've had a couple highs in the last few years due to being on high doses of steroids (prednisone) to temper down my overactive immune system from having systemic lupus.  It raises blood glucose.

I've done all the meds also.  I'm presently taking cymbalta for nerve pain.  I take the MAX dose of 120mg a day and have been on that dose for TEN years.  I fought my insurance company for it off formulary for a prior auth based on A) without it I would be in withdrawal and very sick since it is a seratonin uptake inhibitor drug and that would cause me to have to go on many expensive drugs and treatments.  And B) The use of cymbalta keeps me from having to take a multitude of other expensive medications, like lyrica, neurontin and elavil and opiates that cost more than just cymbalta.  I explained how well it has worked for me, what a good medication it truly is.

I've been through the burning pain and the freezing pain.  Used to only be in my feet and now I get it up my legs occasionally.  Not too often.  I believe the cymbalta works a little for that type pain.  I don't often have tingling pain either.  I do however have zapping type pain and hypersensitivity.  And they are worsening and relentless.  The last bout was a couple weeks ago and it tested my patience.  The kind of pain I have is entrapment pain under my 4th toe right foot.  Doctors used to think it was a neuroma, but it's not.  So says the MRI and the location of the pain is UNDER the toe and not between it where neuroma's like to hide.  It feels much like someone is lighting a match over and over under that toe.  Each time I wince and it goes on and on this last bout for FIVE DAYS without stopping.  The pain feels like paper cuts.  It stings.  It's a 7 on the pain scale, sometimes it's a 10 but when it goes on for days it tears away at your fiber.  Bit by bit.  It is a nightmare.  I used to have the flares of it every few months and it would last for a few hours.  The flares got closer and closer together over the years and have lasted longer and longer.  It now happens every 5 or 7 days and lasts from a day to FIVE days without stopping, one zap right after the other then another and another.  It's EVIL.  I suffer through it, I take cymbalta, and I'm maxed on short acting narcotics and tramadol.  I've tried capascin, lidocaine, all the neuropathy meds, long acting opiates, every short acting narcotic made, etc etc.  Nothing takes the pain away.

I hold the compression for a few seconds of relief.  Ice doesn't work and neither does heat.  Medical marijuana salves are useless.  What an unbelievably nasty condition this neuropathy is.  I have cortisone shots, radiofrequency ablations and nerve blocks.  RIGHT INTO THE AREA, and it doesn't work.  It does not work.  Nothing works.

To make less of it and for a laugh or two I call it Aunt Agatha's Traveling Pains.  It's funny, yes?  Nothing funny about neuropathy folks.  Whether mine is from my lupus or diabetes, doesn't matter..the story ends the same.  It's here to stay.  It's irreversable damage and it's worsening in spite of excellent blood sugar control.  For anyone who has this, I am truly truly sorry.  My heart goes sincerely out to you.

Thanks for listening!