Shawna

Dee,


What a wonderfuly insperational speach you gave! I would love to learn more from you! How did you cope with this and raise your 2 boys? I struggle daily to find a balance between myself, my son and my husband! And most days it seems the mental emotional balance is what I struggle the most with! Dont get me wrong the pain is hurindous at times ok so most of the time since they havent found anything yet that works for me the one that worked the longest 3 months was cymbalta. But I cant control the pain I cant say pain go away! What I can do is learn to hide it a bit better and maybe even find ways to enjoy life again! My little boy is the greatest thing in the world and I do everything in my power to make sure he never once feels that I am angry or upset with him when I am in pain. But on the flip side of that coin putting all that energy into hiding it from my 2 year old leaves me on EMPTY when it comes to my husband and since my son was born he has been pushed so far out of my life and even my sons because I just could not handle 2 people I am just not realizeing that I am the one that pushed my husband away and I am the reason that he has went about his life as if nothing had changed when indeed it did we had a child born 8 weeks premature and my neuropathy gets worse and worse every passing day. For the last 2.5-3 years when my pain got to the point that I gave up and just didnt do anything hardly I slept ate and when my son was born cared for him and shuffeld him back and forth to his various dr apts. All the while my husband was still working going fishing, going to the shooting range ect. And for the longest time I blamed him I told him that he ignors us or he pretends like he is still a single man. He continued living while I turned our home into my prision. And I was very angry with him and blamed him for all of it. We even ended up seeing marriage councler it didnt help. Because I wasnt ready to admit my problems yet. And honestly I am just now realizing how hard it must have been for my husband to be alinated from his wife )we had only eachother for the first 4 years of marriage) and also pushed away from his 1st son. I was so incredibly over protective of my little boy when he was born and am still that way to tell the truth, that I bairly trusted my husband to hold him or feed him. Every time there was the slightes cry I would go running took me a long time to stop doing that but I evenutaly forced myself to go to another part of the house and let them have some time together and I would force myself not to go running at the slighest cry. I do belive that I am still a little to over protective by hey he is my one and only child 2nd pregnancy and it took us from oct 2003 untill his birthday July 26, 2007 to get him! And I know with out a doubt that if anything happend to him I wouldnt survive it! I am thinking I may have to print this out and let my husband read it. Maybe it will help mend the gap I have made between him and me!

ok anyhow rambeling please Id like to hear more from you or anyone that has any advice on rasiing young children and coping with pain!

Something else I realized when I was reading is that all of us say no one can understand us but us and others like us! I havent checked yet but Maybe we should create a support group linked to this one for the family of "us" to go and talk with one another and share there flusterations and tips and trick on how to handle the many moods that come with the pain of a loved one?!?!?!?



Shawna

Fw: [Peripheral_Neuropathy] me

   Ok I wanted to share this with everyone!!!! !

I spend my days, battling extreme fatigue, agonizing pain, and uncontrollable fear.

Constantly wondering what is wrong with me?  Why can no one help me?  Why can I not get answers?

Are my problems physical, mental or both?!?

Am I helpless?  Are there no answers for me?  Am I supposed to just deal with the misery and hope it will go away?

I do everything I can to hide my pain from my 2 year old!  The one thing that keeps me fighting for relief!

I do the best I can to keep him happy, clean, fed and loved.  But is it enough?

Struggling so hard daily to keep the house clean clothes washed and dinner on the table.

By the time I finish theses things I have nothing left, nothing left for myself, nothing left for my husband, nothing left for anyone.

Pushing my husband father and farther away every day with excuses of I am to tired, I am in to much pain or simply not right now!

This is me, this is my life... drained of all energy, of all hope, and filled with agonizing pain and debilitating fatigue.

All caused by something they label as Small Fiber Neuropathy.  A disses of the nerves untreatable, incurable, and in most cases caused by unknown reasons.

Shawna Hall

And brian if this some how fits in that blog thing you were talking about feel free to copy and paste  just dont have the energy!

__._,_.___

.

__,_._,___

About Me - Cindi

Hello Everyone,

To give some background on my journey through Peripheral Neuropathy.  A little on myself I am 32 now the pain started when I was 29.  Well my pain started back in 5/2006 when I was pregnant with my second child.  I chalked it up to pain with second child birth plus taking care of an infant as my children are 13 months apart in age.  That was until after I gave birth the pain still remained.  My feet felt as though I was walking on fire, prickly pins and needle pain through my arms and hands, legs and feet and horrific pain in my lower back and sporadic pain in my middle back.  I went from walking a few miles a day to not able to walk a block to get the mail.  Thank goodness for great family and friend support.  I went through all the tests, EKG, Stress Test, Endoscopy, Colonoscopy, EMG, NCT, etc.  No one knew what to do so after almost a year and the only medicine I was given was amitriptyline which mildly helped at night I went to Scripps in CA for testing.  A neurologist gave me neurotin and elavil which at least I felt I could function somewhat.  He said it was nerve entrapment.  I went to a podiatrist locally in Yuma, AZ and went to an orthopedic surgeon for the arms.  Had surgeries starting 12/2008 – 12/2009, triple nerve decompression at knee, top of foot and ankle for both legs, carpal tunnel release both hands and ulnar nerve transposition both elbows.  Things started to get better than there was a down-ward spiral of the pain slowly getting back to the pain it was when things started in 2006.  Granted I am not to the pain I was in then due to the surgeries but still it is very painful.  So I went to a new neurologist in Scottsdale, AZ who determined I have peripheral neuropathy that is why the surgeries though they help initially can revert back depending on the severity of the neuropathy.  Right now the cause is unknown.  I have an appointment with a neuropathy clinic in 2/10.  I currently take neurotin, tramadol, nortriptylene, flector patches for the pain.  Have tried lidocaine cream and patches but they did nothing for the pain for me.  I am also dealing with a liver problem that occurred at the same time Non-alcoholic steteohepatis which is being treated by Mayo Clinic.  Because of my levels doctors will not try lyrica on me.  I had the best success going to pain management doctor who I was referred to by my podiatrist.  I had a trial of a spinal stimulator and awaiting a date for surgery for the permanent stimulator.  I know this is not for everyone but I can tell you the trial is non-invasive and for me it was like flipping the switch on the pain.  The hard part for me was having the relief for a week and then going back to the pain. 

Cindi

 

shoes

I have found wide, extra wide, etc. shoes on the Internet.  I get my "real" size but in 2xwide.  That has really helped me.  I have a very wide foot and all my life I just bought shoes a size bigger, but found they didn't really fit well.  When I found out I needed a good fitting shoe, I went online and found good looking shoes, plus the crocs which have an RX style which has a much wider protected toe.  I too have liked the New Balance shoes.  They come in extra wide sizes too. 

 

Don't compromise on a good fitting shoe.  It doesn't cure the PN, but it sure does help to have a shoe that feels good on your feet.  The wide sizes cost more, but they are worth it.
 

DeAnn

 

Don't miss out on a blessing because it wasn't packaged the way you expected.

In God We Trust

 

 

Axonal PN

I was told I have Axonal PN about 5 years ago.
I had tingling and numbness in my feet.
It did not bother me much untill 2 years ago.
Then I started to feel weak in my lower legs.
This got progressively worse until 2 weeks ago.
Then it got much worse, so that my legs got very weak.
They would get quite tired when I walked very long.
I used to walk a couple of miles a day.
Now if I walk 1/2 mile I am very tired.
My muscles do not recover very fast at all.
It will take a day to recover.
I went to a neutritional doc a week ago and he prescribed Metanx.
I have been on it about 4 days now.
Can't see any improvement yet.
Anyone else have this kind of PN?

My issue with neuropathy

Hi to everyone reading this! I suppose I should share my story. Everyone is here with their own story of how they developed neuropathy [some don't know for sure]. Mine started in September '09 when I was having very strange symptoms for months before that. It felt like my arms had been stuck into a freezer. To me, it feels like a freezer burn. Initially, it was in my head, then my legs and then my arms -- sometimes in my torso. Now I mostly feel it in my arms. It comes & goes throughout the day. Sometimes when I'm lying down, I feel it in my back. My tongue is also burning; seems to be associated with it but I don't know.

I know now that my neuropathy is the result of lyme disease. I was misdiagnosed for months -- finally diagnosed in October and treated [still in treatment] but the burning symptoms remain. My B-12 levels were checked back in August and were on the low-normal side. I took B-12 supplements which did not alleviate burning. But just last week, I saw a new doctor and he gave me a B-12 injection. That seemed to make a difference for a few days. I did not have total relief, but it was not as extreme as it can be.

I do not know if anyone else out there has neuropathy due to lyme disease. I just know that I can certain sympathize with everyone who is living with this kind of pain on a daily basis. Thanks for all the support here, I really do appreciate it!

Kate

Hi

Hello
I am going to figure out how this works soon,.. right now I do not feel too well and I am really really busy with school and on thursday I have to see the Neuropathyprofessor at Maastricht University Hospital and I hope then I will know more ,.. I will try my best to keep you posted,..
liefs
Annemie

About Brian

I have Peripheral Neuropathy. They do not know the cause of it. The doctor believes I was born with it.
I worked in the receiving and maintenence department in a retail store for 23 years. My doctor told me that if I continued doing that job, I would regret it later in life. I then went on disability.
I took computer classes, and tried getting a desk job. The problem with that is it spread into my hands. I can type, but not fast enough for that kind of job.
I now work as a cashier in another department store. I do not need to lift, or bend, and I find my legs can hold up to standing part time.
My pain is not bad. I have a lot of pins and needles in my feet, and hands. The pain usually does not come unless OI overdue myself.