The Long Diagnosis - You are NORMAL!

I told you how IPN began for me.  After that it took several trips to my general doctor and gynecologist before one of them finally gave up and sent me to a neurologist.  They had given me shots of Vitamin B because it was NORMAL but on the low side.  They had checked my thyroid, not once, not twice but three times and it was NORMAL but on the low side so I was put on special birth control to provide more hormones.  I was tested for diabetes and those tests where NORMAL.  After awhile we began to laugh when they would tell me yet again I was NORMAL but I was definitely not.

Finally the neurologist tested me for neuropathy but surprise, surprise the test with the machines where they stuck needles in me and probes in my neck showed Nothing.  It wasn't until the neurologist tested me manually with tuning forks that she saw the neuropathy.  Guess what?!  I got to start the testing all over again but at least now there was something to work on.  Oh, I forgot to mention the first medicine I was given was steroids and they made me literally freak out and I had to go off of them within a couple of days.  Anyway, the neuro decided to give me a steroid shot in the head.  Again, not the best route to go.  Then we upped my Vitamin D because yet again it was NORMAL but on the low side.  Then we went to Lyrica.  The first night I looked at those pills for a long time and weighed whether the possible side effects outweighed the pain.  I finally decided that they did because I needed to be able to do more than sit with ice on my head.  Well luckily the Lyrica has not really had any side effects but it also did nothing.  We upped the dose and still nothing.

Finally the neuro's assistant who is one of my favorite people in the world now, decided we should try adding Cymbalta.  Now understand I was not as familiar with it and she kept reminding me that it was not just for depression but was known to help neuropathy.  I did not care at this point and would have tried it anyway.  Happily it worked a good bit and within a couple of days I could actually go without an ice pack at night.  After almost a year that was super!

So at this time, I take all of the following:

Lyrica twice a day
Cymbalta once a day
Extra Vitamin D
Extra Vitamin B
Vitamin C (which has really kept me away from colds)
Multivitamin for women
Hormonal Birth Control to level my hormones
Extra Iron
Zyrtec for my allergies

I went from a woman who avoided pills to one who takes way too many.  However, for the most part my pain has dulled.  We are still working on the right levels of medication and I also have prescription grade Aleve to help with pains and headaches.  The neuro assistant thinks it is possible that I am having a weird kind of migraine and we have done journals of what I eat and other possible triggers and nothing really stands out.  It continues to be a work in progress and I will even be off for a sleep study soon to see if maybe their is something about my sleep or lack thereof that will give us a clue.

I have decided that obviously when I picked this life I wanted to be a medical detective as this is the second major illness where I have had to keep pushing for a resolution.  The first one led to my beautiful daughter so maybe this one will lead to something wonderful as well!

IPN Defined

So what is Idiopathic Peripheral Neuropathy?  Sounds heinous and pretty much is!  What I find fun is that if we took Idiopathic and compared it with other "pathic" words we assume some interesting things.  For example if we compared it to psychopathic meaning involving psychos, then idiopathic should obviously mean that I am an idiot!  Oh yes, never a truer statement!  However, what idiopathic really means is much worse.  In the world of nerves it means - "Doctor Know Not Why!"  That's right it means the doctors and scientist are idiots because my form of PN has no reason that they can find.  Sadly a majority of people with this condition are termed to be idiopathic.  The rest of the group with PN usually fall either as diabetic or have dealt with an infection or something that can be seen in testing.  The PN part of the definition basically states that the person has nerve endings near the surface that are prone to distress.  Everyone has it in different ways mine focuses on my head, shoulders, hands and feet.  Later I will tell you more about how I deal with mine but as there are many ways to have it there are many ways to deal with it as well.  If any of you out there have PN in any form feel free to share how you cope!  Sometimes your methods may work for others.  Let's share and feel better together!

Worn Out

This is how I feel today already!  It is 5:45am and I am worn out!  It is a compilation of a very long week last week that I never got enough rest from, five years of off and on sleeping since my daughter was born, medications I take for IPN and just the symptoms I deal with daily!  I have too many dreams at night, again we think a med thing, which constantly wake me up so I never really sleep well.  Unless it is the middle of the day and I shouldn't be sleeping!  I just really want to feel like myself again and I am starting to doubt that I ever will.  Ok, enough whining!  If you see me make sure that I am awake and give me a hug!  This too shall pass!

Yoga - A Huge Help

You will hear me talk a lot about yoga on this blog.  Exercise really helps IPN but heavy cardio workouts can cause me more pain.  So I turned to yoga.  Yoga allows you to stretch and get your heart rate up without putting major stress on your body.  It also is very calming, improves your posture and helps you to breath better.  I do however have to find the time like with any other exercise to actually do it.  It appears that 4:30 am is the best time for me but my sleepy brain is not always happy about that.  So if you see me encourage me to keep getting up and doing yoga.  It will help me have a better attitude and I know all of my work buddies would appreciate that.  So if you have PN in any form do your best to do some activity as much as possible it will help you feel better. 

(picture borrowed from Humanity Healing Community blog)

Starting a Fire

IPN began for me almost three years ago.  I can pinpoint the date and even after thorough review none of my doctors can determine anything about what I did that day that would have caused this.  They all think it was happening over time.  I am still not so sure.  You see, we had two beautiful cats in our house that basically lived out of one room for a couple of years.  We felt that they needed a better home because both me and my daughter had increased allergies around them.  So they were given to a great home and we spent the day cleaning their room from top to bottom.  By the end I was worn out, sneezy and had one of the worst headaches of my life.  I thought it was probably all of the cat hair and dander and the next day I felt better.  However, during the middle of the next day my feet and hands began tingling and burning for no apparent reason.  From there on those feelings have never really gone away.  There is much more to tell you about what I dealt with from a variety of doctors since that day and we will get there as we go forward.  


If today you have no pain, be thankful and celebrate.

Neuropathy Association

Here is a link to an association dedicated to helping people with neuropathy and supporting legislation to provide medical assistance.   I have them on Facebook and receive updates from them.  If you have this issue or know someone who does please go to this site for assistance.  May 14-18 is National Neuropathy Week and there are things you can get to show your support for those who have this illness.  

National Neuropathy Association

Fire Pain - What is it?

Fire Pain is what I feel everyday in the right side of my head, my hands and feet.  If it is bad enough I can feel it all over to some level.  I call it Fire Pain because it a a burning that at its worst feels like I am on fire or someone has placed a heater on me.  Sometimes I break out in a heat rash because it is so bad.  I began this blog today because I want to help others with this problem Peripheral Neuropathy and in my case Idiopathic PN  because there are many of us.  I have dealt with this only for the last couple of years and as we go I will tell you more about how it started for me.  I have another blog where I discussed a time were I dealt with infertility issues.  Luckily that was solved but instead of continuing that discussion I decided to start fresh and focus on this topic that means a lot to me right now.  This strange disorder can make your life difficult if not impossible to live depending on the severity. 

Welcome to my blog!  We will talk about all things IPN and not just the tough ones but also the good things that come from dealing with any chronic pain. 

Guess what there are some good things too!