Neuropathy History

I am going to record this in the hopes that it will help my descendants and others who might chance upon it.

Now that my ear infections are cleared up, I still am not sleeping well.   There was another underlying problem that was building up, and now I have just realized it.

HIP HISTORY

For decades, I have had problems with my hips when I sat down.   It was especially bad when driving for long periods.   It started out as pain in the ball joint of both hips.   I felt it on the outside of the hip.   after a few years, it became kind of a painful numbness.   In 2000, I noticed that whenever I sat down from more than 30 minutes, I would get a cold spot on the outside of my hip the size of a thumbprint.

By 2006, this spot had grown to the size of a handprint.  We discovered spinal nerve damage in 2009, and severe hip ball joint degradation on both hips.   Unfortunately, the Medical plans require me to go through a period Physical Therapy and Cortison Shots before they would do surgery.  

Physical Therapy showed negative results, I had less range of movement and strength after the physical Therapy.   The therapists didn't understand this, but I did.   The neuropathy was progressing.  I got 13 cortisone shots in the spine over a 6 week period, and there was no improvement in low back pain or coldness.   I was not able to sleep without heating pads under my hips.

It got so bad I created a belt to hold several pouches of chemical heat that went from one hip, across the back, to the other hip.  This was the only way I could walk outside in the cold (it was winter).  This progressed until I was not able to move my feet forward any farther than a foot print.

I had 3 major surgeries  in 2010 - spinal stimulator installed for sacrailiac, and both hip joints replaced.

My youngest brother, who is 5 years younger than me, has had one hip replaced and one knee replaced.   My father had both knees replaced.

My theory is that we all have a much higher than average bone density.  Our bones way more, so over time, the degradation is faster.   I had a chiropractor when I was 35 years old that told me, while looking at an X-ray of my spine, that I had a spine of a 70 year old man.


FEET HISTORY

During this time period, I was also having problems with my feet.  

Around 2000, I would wake up sometimes with what felt like ground particles of glass underneath the skin on the bottoms of my feet when I woke up.

In 2005, my toes were beginning to look unhealthy.  Soaking them in a warm tub with medical bath salts actually hurt.

In 2006, I would wake up with my feet ice cold.   I was barely able to walk on them when I got up.   Thia improved greatly when I got a CPAP machine.   It helped so much, my feet actually felt uncomfortably HOT to me when I woke up, I assume because I had become so accustomed to the coldness.   This, all due to improved oxygen in the blood.   My sleep apnea was severe - apnea score = 68.

In 2007, I lost feeling in my toes.
In 2008, I lost feeling along all the bottoms of both feet.  Not completely numb, but bad.

The doctors did a test to determine the extent of my nueropathy in 2009.  It was determined that the loss of sensation in my feet was not due to the Neuropathy in my hips.   It was caused by neuropathy in my ankles.   They did not do a test for neuropathy for my knees.   The neuropathy in my hips was diagnosed as mild because I still had sensation and complete movement in the legs.  My ankles were diagnosed as moderate, because I still had complete movement.

In 2010, my toes lost all sensation.  I kept getting infections in my big toes on both feet, not at the same time, and typically just the right big toe.   At one point, I went to the doctor.  The infection was easily visible.  The doctor squeezed my big toe, and pus came out.  I felt absolutely nothing.

WHOLE BODY HISTORY

In 2005, I switched to a memory foam mattress

In 2008, I switched to the thickest memory foam mattress I could find - 13 inches.

In 2011, I was having severe insomnia.   The biggest component was pain in the spine.  This was relieved when I discovered I need to sleep on top of an electric blanket.   The electric blanket setting was 3.   The heat helped with pain, but also made me sink deeper into the memory foam, since it is heat activated.

In 2012, I was finding other therapies to use to help induce sleep.   Recently, I discovered that I had to increase the level of the electric blanket.  I had to increase the heat setting to 7.   But this was too high for something inside my gut.   after a few days, I got really sick.   I needed to put a regular thick blanket between my back and the electric blanket.   This diffused the heat better, and no one part of my back felt uncomfortable.   For the diffusion to work, I had to turn the electric blanket too high.

In 2012, If I lay down on a memory foam mattress without any heat underneath me, I wake up shivering with cold.  The memory foam sucks all the heat out of me.

I was still having problems falling asleep once I was sleepy and in bed.   My legs just didn't feel right, and I kept shifting them.   I realized today that my legs were not heavy enough to sink into the mattress, so they weren't getting much heat.    I had 2 old heating pads called Lava Buns.   These microwavable heating pads are rated to give someone a warm seat in an outdoor football stadium for 4 hours when there was snow on the ground.   I put those heating pads under my calves.   I added a sheet to insulate me from the pads.   This works well, so far.

In 2012, my feet get so numb after driving and walking for 3 to 4 hours, that it is difficult to drive.   I cannot feel the brake and gas pedals.  I started noticing this in 2010.  I would occasionally hit both the brake pedal and the gas pedal at the same time when I intended to stop the car.   I solved this by using the right foot for gas and the left foot for brake.

On a separate issue, I am also having what I consider neuropathy problems problems with my hands, originating in my wrists.   As of 2012, my fingertips are numb, and my typing is error prone.  I have been typing all my adult life, and my typing speed was blindingly fast and accurate.  I am seeing new errors in my typing, which are due to mis-striking keys (hitting 2 keys at the same time  OR   not hitting a key strong enough to register a keystroke was made).

I am sad with how fast this is progressing.  I am 60 years old.  I was hoping I would have 10 more years of independence - not relying on others or machines to move me around.   I will think and expect positives