I agree with Enna. This is a place where we can talk about the pain and people understand. For people that have not experienced it, they have no concept of what it is like and it is hard for them to be empathetic. So, yes, it may sound as though there is a lot of negativity and pessimism, but, it is here that we can find someone that understands when we are in those painful episodes.

Many of us have good days mixed in with the bad ones but the tendency is NOT to post that we had an OK day. We come here for support and many times, we don't need support for those good days. It is the bad ones that make us type away.

I just want you to know that I AM having a good day on the pain scale for PN. I have been having MANY of them recently.

You may read of many progressions with PN but that does not mean it will forever get worse and worse with no relief. Through the progressions, changes in treatment options may provide relief.

Hope you find what will help alleviate YOUR pain.

Scared to death about my neuropathy
 

Hi Dancinglady
I am having an excellent day with my neuropathy today. I usually do have good days. The nights if it's acting up or talking back I have a compound cream, BenGay and Vicks I massage into my feet and then I am fine the menthol from the Vicks and BenGay actually relaxes me and it's off to see the sand man.

I may have missed the reason you have neuropathy and the type and testing you have had.

Mine is diabetic sensori poly neuropathy caused by diabetes. I have to have a plan of action which I do. I was diagnosed a year and a half ago and joined this form.

It has taken me a long time to realize that not controlling my diet is harmful to me and the foods I love have to be portioned control.

If I can do this and with the help of my team members I feel I will be successful.

Yesterday my sugar reading was 84 the lowest since I don't remember.

Yes I listen to the negative and I apply it to my experiences and learn to turn it around and make it a positive.

I was stubborn and wanted cereal for a midnight snack and could not believe it was giving me high readings then I read and others can't have cereal or toast have to have a protein that was when I realized I have to change my thinking for now of what it was years ago.

This is an excellent form you can take and make it a positive and apply so you benefit from us.

I also lead the same life I did before I was diagnosed. I feel blessed that it has not interfered with any of my daily living regime. I drive,work in the yard, shop do every thing I did before and then some.

I have a sick husband who had 2 major surgeries last year and he is now diagnosed with vascular dementia. He does his own hygiene, but the rest I have to take care of him and remind him.

I am going to close for now and with the responses you have read you can see we are all individuals with our neuropathies coming together for warm conversation, answer and sharing of our common health issues.


Uglogirl

May Love Guide You, Dancinglady
 

Hi Dancinglady,

Again, welcome to NeuroTalk. :)
I think any member having experienced severe and chronic pain can empathize with your concerns.

The cross-section of people with neuropathies and/or neuropathic pain, as seen here on NT, is a very small segment of the estimated totals.

"The American Chronic Pain Association estimates that more than 15 million people in the U.S. and Europe have some degree of neuropathic pain. More than two out of every 100 persons are estimated to have peripheral neuropathy; the incidence rises to eight in every 100 people for people aged 55 or older. (1) "
http://www.neuromodulation.com/fact_...ral_neuropathy


Thus, you may not be getting a completely clear picture of neuropathy for the majority.

I know of many people with various degrees of neuropathy. Some have minor discomfort. Some are fortunate enough to figure out a cause and eliminate the cause. Some have cases which seem to simply go away.

For many, the experience changes over time. Some have had years when they could not wear shoes due to the severity of pain; yet, find out they can wear shoes without a problem several months or a year later, etc.

With any ultra-challenging and severely painful life changes (whether physical or psychological pain), we are often challenged to make a decision to live for today, each and every day. Sometimes, we choose to live life hour-by-hour.

I have gotten through the past 30+ years using this method of committing to getting through the hour, or committing to getting through the day.
When I am stronger, I can commit to getting through the week.
My experience with pain and complications is maybe more challenging than some and definitely less challenging than others' experiences.

Yet, each person's own level of pain is significant and is the challenge given to each one of us.

I definitely do not want to diminish your pain and your fear about your future.
Your pain, your fear, your sense of overwhelm is all real. I am very concerned about you. :hug:

We cannot know our own future based upon the accounts of others.

In thinking about out futures, it's helpful (and not impractical) to leave room for healing, for discoveries, for changes which affect each of us in a helpful, healing way.

Many challenging physical conditions are brought about by multiple co-occurring factors. Since they are often multifactorial, there is a chance of discovering and changing some, if not all, of the contributing factors.

When I am deeply depressed by my own challenges and related pain, I find it difficult to read about the pain of others. I cannot frequent forums or places where others speak of the depth of their pain.

When I am less depressed, less anxious about my own path, I can more easily tolerate openly listening to, and tolerating, the pain expressed by others.

Your current feelings are "normal" for what you are experiencing. :hug:

We are each multi-layered individuals. We do best when we attend to ourselves on all levels -- physical, emotional, spiritual. I often need to pay attention to physical challenges, psychological challenges and/or mood and to spiritual challenges. As I attend to each aspect of my Being, I find greater harmony within, on all levels, in every aspect. It is then that Joy and Hope again override any sense of challenges (or pain/fear).

It's important to have support, as well.
Sometimes, things just feel too overwhelming and we need to hear an encouraging word from someone else, someone important to us.
Do you have support?

Dancinglady, I am very sorry for your pain; yet, I am glad you are here with us and are sharing your concerns openly.

I have found it critical for me to learn self-compassion. I hope you also come to a place of self-compassion, realizing your worth and your important role here in this lifetime, despite any challenges presenting to you.

I hope we can support you now in your finding a way for you to continue on your life path.

Please keep on sharing with us. We are all here to learn from one another, to support one another, to love one another. :grouphug:

Offering Love and Prayers,
DejaVu

What a wonderful post
 

There were some comments that REALLY struck me as profound. The entire post was wonderful but I would like to highlight a few comments that I wish I had been able to convey.

So true, so true. Thank you for highlighting!

DejaVu
your tender expressive sweetness in your
sharing
your l
words are heard
your mindfulness a comfort
you just ever so eloquently
spoke of mutual experiences
as only time wisdom and personal beliefs
as things such as making it to the bathroom in time as
my feet and hands are in such pain
and then the multi factorial problems that follow
to then have to raise ones head
try to bend as my back is not fixable
oh so two orthopedic surgeons say
then i have the hope such as the pioneering doctor
Kevin Tracey of neurology in NYC
his non narcotic approach to healing
i have a child who is an epileptic who has a VNS
it to reboot the brain
that a different subject
back to saying
thank you for sharing
in addition to my existing physical pains
i no longer can use a soft collar something i wear
all the time after surgery number two
something is going on
this i know for certain
Wednesday i see the pain guy
i lost so much respect for
ask him to have a picture taken
to see whats going on
we shall see
bed ridden this body is in a sad frightened
way knowing my body
my hands must be flat when falling asleep
my body contorted in the most unusual way
in the end my forehead tilted ever just so on the least
elevation just enough to breath
again with no collar
it is change again
frightening as it
it is here i come for the unconditional support
something i do not even get from my immediate family
especially when fallen into dark place once
unimaginable thoughts
i cannot lie
daunting
though
my path
my cross
my pain
my surrendering to my Father
when i can do no more
thank you so much for sharing
love
me

The Importance of Community
 

Dear Eva,

Words cannot convey the huge amount of admiration and Love I hold for you.
I do understand you walk an immensely challenging path. :hug:

You are incredibly beautiful, in every way, and this is true even within your most challenging moments. When you write about feeling frustrated, overwhelmed, and dark moments, I feel your pain and at the same time, I see your beauty --the warm, bright light, the huge spark of Divinity which emanates from you.

The ability to know when and how to surrender is important to finding any level of healing, as well as critical to creating moments of Peace.

I read and re-read, further pondering your posts, as you are a gift unto all of us. I have much to learn from you and from all you share. :hug:

We are all One in the Spirit. We gather together to share our pain, our fears, our anxieties, our Joys, our Hopes, our Triumphs... and so much more. We gather together to support one another within the unity of this compassionate community. Many of us are truly "family" to one another, often a stronger and healthier family (in many ways) than the families we were born into.
Every member plays a very important role for the whole community.

Such a Blessing! :)

:grouphug:

DejaVu

Hi Hopeless.
 

I fixed it I hope.

Yes, you did.
 

Thanks. I see you changed the salutation.

I know Dancing Lady will appreciate your post.

I did, even though it was first mis-directed to me.

Sorry don't understand fixed what?