Scared to death about my neuropathy
 

If I read any more negative, depressing, non-success, nothing a person can to fix or stop this problem in its tracks, hopeless posts on this forum I am going to start thinking about ending it. Everyone on the neuropathy forum talks about their pain, suffering, hopelessness, struggle. I am assuming that people who have successfully managed their illness have left the site. Everyday one more post talks about progression. One more post talks about not being able to control anything about the disease effectively. It sounds like I am in the very early stages and in a couple of months I won't be able to move and will be in so much pain I will suffer endlessly with no hope of relief. If this is my future there will be none. The reason I am posting here is because the moderators said that if I post anything about suicide it has to be here. HELP. Does anyone have a success story of getting better or is this just the start to my end. As one poster put it "self delivery". I am hoping the people on the site are the few not the majority of neuropathy sufferers. I guess people have their reasons why they want to stay alive with all of this horrible pain. I do not. :confused::confused::eek::eek:

Hello dancinglady :)
 

:hug::hug:I have severe small fiber neuropathy and the skin biopsy showed NO A or C Fibers are left in my feet......0....zero.....nada.

I was dx's Sept 2013 and yes it has been a journey in pain. I was stubborn and didn't go to the pain mgmt. dr until last Sept/Oct even though I had 3 dr's telling me that was what I needed. Didn't want to go to a 'pill mill' as I had seen on TV.

Well they are not all pill mills as I have learned with very caring and helpful dr's and staff. Not sure if you use PM or not. Due to the death of my husband I haven't been able to read up on folks and their conditions.

Using BuTrans Transdermal pain patches that are 20 mcg/hr for 7 days and oxycodone 10-325 I manage. Every now and then I ask my PCP for some 20 mg prednisone as it seems to help but is not very good for you.

We are here when the sun comes up every morning and goes down every evening. What we decide to do during that time is up to each of us. I choose to look at all the wonders around me that God has given us. Sunshine, flowers, trees, birds, smiling and laughing children that I hear outside playing. It's what you see and feel that can make a difference.

Do I go to bed crying some nights ? Does the pain wake me up in my feet and hands ? Do I have to stay in bed for days because I can't walk because my feet hurt so damn bad ? Yep to all of those but yet I keep going.

I do not want to be defined by my disease or my pain.

My mind is crazy right now and I hope I'm making sense to you but this is a place for people that are ok and managing and for people just starting this journey and need caring guidance and love.

And no not everyone leaves this site when they are better. I'm on paxil 40 mg a day and gabapentin 1800 mg a day. Along with the patch and oxycodone I get by. Is it perfect ?....no...never going to be but it's the best I can do at the present. May have to change meds in the future who knows but I'm willing to stay here and keep trying for myself. FOR MYSELF and no one else. Because I matter.....I'm important to this world that doesn't see my pain.

Hope some of this helps.

Debi from Georgia

Hi Dancinglady,

People who have gotten better or are less severe might be out in the world doing other things. Do people show up here when in need of venting and support? Of course! But I am certain many cases of neuropathy are out there are just trucking along. I have a sister who is one of them. Do not project worse case scenarios onto your own future. Every case is different and there is no reason to believe yours will be the worst possible. The forums go through cycles. Members go through cycles. They come and go and have good days and bad days. Often we hear about the bad days and that's okay with me because I am glad people reach out when they are feeling at their worst. But it IS nice to have some balance.

Many of us go out of our way to focus on small successes. One member even started a Success stories Sticky thread on a sub-forum. Some members who deal with excessive pain daily get on to encourage others and remind us of our bravery and general awesomeness. There are many tales of beauty and meaning.

If a subforum is triggering for you explore another or see what positive you can jump in with. We can all use redirection and advice sometimes. If something helps you cope please share it! Tool around on the Social Chat and The Lighter Side. There are many ways to participate.

I hope you find a spot that helps you feel at home. There really is a great group of people here.

Sending hugs, :hug:

I firmly believe that there is help available through pain management for neuropathy sufferers. It may take some trial and error but some combination of medication and lifestyle changes will reduce pain to levels which allow you to concentrate on other activities for most or all of each day. If your need for pain management is not being taken seriously, keep insisting.
Many of us with the most severe cases, like Debi, are on serious pain medication. I am on time release morphine, MS Contin, 30 mg x3, along with gabapentin, baclofen, oxycodone for breakthrough pain, and Valium for severe muscle spasms. It sounds like a lot of medication but I have noticed few if any cognitive effects. I am able to care for my family, cook, do some shopping, drive a little, go for short walks. It is not everything I would like to do or used to do, but it is a fine quality of life.
There are times when I have to talk myself into going on, when the burning gets out of control or I feel especially useless, but this problem is more related to my state of mind than my physical condition. Even if I enjoyed perfect health I would have feelings of worthlessness, I always have struggled with them, since early childhood.
I am sorry that you find the forum depressing. I have always found it inspiring, many people here are doing very well despite neuropathy. It is natural that newly diagnosed people are frightened but many of us have learned to live with our pain and disability without letting it define us as Debi said.
Many neuropathies do not progress or progress very slowly. Please insist on the help you need.

Hi Dancinglady. I think its human nature to release the negative rather than the positive, especially on a forum like Neurotalk. I know for a fact, most of my posts have been of a negative tone.

I hope your situation improves because as a sufferer of nerve pain, I would not wish it on my worst enemy. But know & understand that you are not alone & there will always be someone on this site who WILL be a friendly & understanding digital shoulder to lean on...

There are some great people of this site who can & will try to help...


Cheers,

Andy.

There is always the hope for many , no matter what serious health issues they have, that one day, a cure, a new med, or miracle treatment will come along..

Sometimes learning about the stages of grief is helpful - not only about loss of loved one, but loss of health, or other major life changes.

stages of grief
http://psychcentral.com/lib/the-5-st...oss-and-grief/
http://www.recover-from-grief.com/7-...-of-grief.html

Hi Dancinglady and all-

I feel deeply grateful that you came here. Paint me over optimistic, yet I believe somehow, some way there is a way to go forward.

My neuropathy is permanent. It was not of illness origin. I was badly hurt in a freeway high speed wreck. Changed my life. Pain has been horrifically off scale. Many, many surgeries. My pain management doc ran me through all tests thinking I had/have RSD CRPS.

No feeling below the knees. Fluctuating pain knees up to lumbar area. Legs that jump at the dangedest times whether I am resting or at work. Spine injuries even affected my ability to hold a pen to write my name.

The good stuff? I had lost my career. Family and I lived off savings for years until, by grace of God, pain management FINALLY began to work a bit. I was able to resume practice. Help clients. Provide for my family. Even regain a home - because we had sold all of our "things."

I feel blessed. We had sold my exercise bike in "the great sell off" but found one at the Habitat For Humanity Re-Store early in the summer. I have been dedicated at working to resume some lower body strength. Riding now up to an average 12 miles a day.

Funny thing is, I can do that but can't swing dance with my wife anymore. Those legs that can't feel are troublesome when dancing.

I chimed in to share despite persistent neuropathy, continuing pain, there definitely IS quality to this life. You know what? I am pulling for you that good.....measurable good will come your way. And soon.

M56

Hi Dancing Lady
I've read most of your posts and can appreciate what you're facing. Reading about others trauma on NT, when you are facing your own seemingly impossible dilemma, can exacerbate depressive feelings.

Another reason there may not be too many success stories on NT is that some people are naturally reluctant to 'crow' about their good days or success to those they know are worse off than they are.

However that said there are good stories on here - and there are threads that discuss successful treatments for PN. Admittedly a lot of searching and reading is needed to find them and as you're finding that overwhelming at present maybe a short break until you are feeling stronger might help.

If you think it might help, I'd be willing to do some searching for you, and share relevant threads with you. If you'd like to do this and are able to do private messaging please contact me and we can discuss what you'd like to search.

Walking in your shoes - bluesfan

Hi dancinglady,

I am not very good with putting things into words these days but I want to share my thoughts with you from my own experiences.

Hope this comes onto paper as it is in my head.

I think about how things change from day to day, month to month and year to year in my life. How times that I thought I would never get through,... some how are things of the past. I made it through and found life can and does get better. There will always be new challenges to face, but we never know what tomorrow will bring unless we are here to greet it.

It took a very long time, but at the moment, my PN is under control. I went from excruciating pain that was 24/7 non-stop when nothing seemed to reduce the pain to having low levels of intermittent pain lately. (The past few months.) Yes, there is hope, and there are some success stories. I am not cured by any means and I know that those extreme levels can return at any moment but if I was not here, I would not have experienced the success I got from pain mgt.

I am dealing with MANY various health conditions, PN being only one of them but getting at least one under control has made life more bearable.

Where you see negativity in reading posts of unrelenting pain from PN, I see how much worse others are and how very fortunate I am that I do not have some of the various conditions of others here on NT.

Reading about others makes me feel blessed.

I could wake tomorrow and my PN could be back in full force but I want to be here each day to experience whatever the day has in store. You never know what tomorrow will be like until you are in it.

It is a difficult adjustment to go from being an active healthy person to a complete shut-in, with pain others could only imagine, unable to function in daily activities of life as simple as walking from one room in your home to another but you do adjust. It may not be the life you had or want, but it is the one you are living and the operative word is living.

I want to be around to see what tomorrow brings. But that is just the way I look at life.

There were times when I wanted to give up. I didn't think I could make it through certain events and pain in my life but I did and every time, I was glad I stuck around for the next chapter in my life.

Who knows, you could be reading a post from me tomorrow that is full of despair and pain but for the moment, I am blessed just to be alive. The friends here have helped me through some awful times and horrendous pain. I will just be happy that my PN is better for now and pain mgt. has tamed the beast for the moment. That gives me a chance to work on all the other issues that keep me bed-ridden so much of the time.

Dancing lady:hug:
The reason I vent here is because here we are understanding. You are not judged for feeling what you feel. Yes, some days are beyond hard and how we survive them is a miracle.
We are wonderfully made. We make it everyday..so even though you feel this is not a road you can travel, it is your, our road. You don't have to travel it alone. And enjoy the simple things, like any reason to smile. Yesterday, drunk on a plane came on. Instead of oh that's terrible to be drunk or sing about it....I saw it for an escape. I actually lol and didn't feel bad about it.
Never stop talking to us one or all. You are needed here. Your story matters. Your vents are valued.
Keep up the fright.:grouphug:

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?

The Fix
 

Hi Dancing Lady,

A post was made in response to your thread but accidentally had the wrong salutation. The poster changed it to address YOU. That was what was "fixed".

Oh makes sense.

lt warms my heart to read all the wonderful supportive responses to dancinglady. That is what this forum is all about! Thank you all! :grouphug:

Depends on the individual and their neuropathy. Many have it and it progresses little over many years. That's not usually the folk here and in my research you are correct. Us with severe neuropathy don't often get better. I'm about where you are. I'm pretty certain that I'll be in the extreme pain group soon. I have no desire to live like that. That's just the way it goes.

I look at things this way. I'm mortal and I shall die from something no matter what. So by choosing the time of my own death I'm really not doing much to alter where I'm going anyway, just the timing. And I'd not do it at all if I wasn't in a body being tortured physically. I see no reason to consider that a life.

Can we know what lies ahead in daily life?
 

A warm hello to all. :grouphug:

I feel this discussion as very worthwhile, very important.

The bottom line is: These decisions to go on further and to see what happens, or to not go on any further, are very individual choices.

I honestly do not know it's possible for us to accurately predict the future.

Researchers had told me to go to pick out a powered wheelchair 28 years ago.
I had refused to do so. They were shocked by my refusal. I had even been referred to a psychiatrist because the doctors had felt I was in deep denial. It was their opinion I would not be walking at all within 6-12 months.

I was told, yet again, to go immediately to pick out a powered wheelchair, by a totally different set of researchers, ten years ago. I had again refused to do so. I had gotten quite a lecture about my "non-compliance" and my "denial" about the seriousness of my medical conditions. One researcher became very upset with my "non-compliance" in securing a powered wheelchair. I am sure he was concerned for me. He became quite loud and had said, "I don't know that you will be walking at all within the next 6 months." I had replied, "With all due respect, we honestly do not know that about you, about me, or about anyone else in this room today." (Two interns had privately thanked me after the meeting.)

In truth, if I had needed a powered wheelchair at any point, I would have had to order one to go anywhere.

This isn't about denial or non-compliance, it's about not allowing others' (including the experts') predictions/expectations (nor research statistics) to pre-determine my present day experience and/or my future.

If/when I truly need a powered wheel chair, I will then look into obtaining one.
(In truth, I am getting closer to having to think about this now, 28 years later.)

I now intermittently use one crutch, when I need assistance walking.
I use a wheelchair in airports (and/or in very large hospitals) when I cannot otherwise cover the distance or make my flight connection on time when in an exacerbation of pain/limitations.

My DH had asked me if I might want to start looking at powered mobility aids earlier this summer. He had a very serious look on his face as he brought me some of his research on various products. I had thanked him and told him I would review his research and would make a list of what I perceive to be viable options. We sat down to discuss this two evenings later. I thanked him for his concern and for his efforts. I then showed him my list. I had included a variety of options, contingent upon on the budget. I had found some very nice options locally: a customized Harley, a very sharp BMW, an awesome Honda Shadow (low-rider just like the one I used to have) and a Cam-Am Spyder. :D And so it goes. ;) :D

Honestly, I will deal with adding to my mobility aids if/when I truly need to do so.

I have had 5 friends diagnosed with ALS. Two were misdiagnosed. Three were accurately diagnosed. One of these three followed the rapid progression type of course. The other two, 6 and 8 years later are living life with some effects upon them, yet still work, etc. All five were told they had approximately 3 years to live. Those expectations were erroneous for 4 out of 5 in this one account, and erroneous for 2 of the 3 properly/accurately diagnosed.

My point: I honestly do not think we (nor anyone else) can 100% accurately predict our individual futures.

:grouphug:
Love to All,
DejaVu

P.S. I have had many awesome years of a deeply enriched life over the past 30+ years of medical disability. I had married 10 years into these challenges. Life was not over for me, despite what I was told by the "experts." Life had drastically changed, for sure. In some ways, life had just begun. It's been a very real and a demanding challenge much of the time. I have felt like quitting at times. Yet, I have also grown in so many ways. :) I do not know how this will turn out. I try to stay focused on the "Present Moment." In the end, I know I have done my best and that's truly the most each of us can do. :grouphug:

Sometimes the thought of one choosing their own time; when it is not; can change what you might have been able to do or be there for someone in need.

Yes, I have had days when fleeting thoughts of being tired of all of this enter my mind; but then something that I may have said or done that has really made someone's day; especially friends and family make me feel good about myself and know I am here for a purpose.

Also, I would be selfish should I be the cause of anyone possibly feeling guilt that there could have been something they said or did to cause such a choice.

Quality of life is different for all of us. Often our thoughts can pull us down or bring us "up".

Sending positive thoughts.


Gerry

Well to each their own. For myself once I start living for others at my expense I've become nothing but a prop for their lives while I lose my own. Not my path but I have no issue with others choosing it.

Very interesting thought. I guess either way, you would lose your own.
Thanks for your input.

Gerry

Keepin on keepin on. I must focus on one step, one day, one feeling that I matter and make a difference. We are community. together we make a difference.......
Yup

I changed my mind
 

I posted earlier this evening on your other thread that I would remain silent hence forth but I have changed my mind after giving it some thought and re-reading the post you made when I first responded about a month ago.

Based on THIS post, would you mind sharing something with us about your neuropathic diagnosis, symptoms, and pain?

I respect your privacy and if you wish not to respond, I will certainly understand.

There is a BIG difference between diabetic neuropathy prognosis and the prognosis of PN from other causes and also of an idiopathic nature.

Many people here have idiopathic neuropathies, some from chemo, some from other drug induced causes. The types and causes of peripheral neuropathy are vast.

If someone has "diabetic" neuropathy, the prognosis is usually much better and the symptoms and pain greatly reduced by good control of blood sugar levels. Many have lessened their symptoms and even reversed the nerve damage.

If you have been diagnosed with "diabetic" neuropathy, your prognosis may be very good with proper medical treatment.

Do you know the cause of your PN? Are you diabetic? Are you levels under control? How long ago were you diagnosed? How long have you been experiencing symptoms? What are your symptoms? What body parts are affected?

Again, if you wish to keep this information private, I totally respect that.

We may be able to help with your PN pain based upon your response.

Scared to death about my neuropathy
 

Mine is diabetic you are correct about lesser symptoms most of the time with control but not all the time it does tend to flair even under control much pain I might add so much I will put my feet in cold water for 5 min and take a Percocet. II would like to keep my reading at 95 and compare but it is a real challenge Intakes nothing to get it over the 95 range.


Uglogirl

You are not alone. I am a retired p.a. I have found personally there is only one thing worse to live with. Foe me it was very severe Tinnitus i.e. Ringing in the ears so bad that I could feel the hair cells in my ear vibrate for 5&1/2 yrs. But this Neuropathy is not nearly as bad. Hang in there a little longer. I cured my own Tinnitus while being told all along (you just have to learn to live with it) Being a p.a. & working in the Medical field. Don't give up just yet. But I must admit there are a lot of times I think of it to. Just be strong if you can.

Hi Beeman

Would you mind sharing how you cured your tinnitus? I'm sure many people here would appreciate info on how to do this. Thanks in advance.
Hope your neuropathy stays at a bearable level.

I would also be very interested in how you cured your tinnitus. I'd like to also say that neuropathy symptoms vary between individuals. Your neuropathy and my neuropathy may be bearable but some have it much worse than I and it certainly doesn't sound very bearable, what they are describing.

Hi Dancinglady,
I was given a diagnosis of trigeminal neuralgia three years ago and I was so upset that I went to the store, bought beer and cigarettes and stayed home all afternoon by myself drinking and smoking and googling. The googling made me even more upset, especially when I learned that I had something with the nickname "suicide disease."

Because of this condition, I have pain every day, being able to work has become a huge struggle for me, I can't listen to music or read books (two things I used to LOVE), my marriage is falling apart, I've spent thousands of dollars on medical care and my brain doesn't work as well as it used to because of the medications I take.

BUT...Most of the doctors I've seen these past three years have seemed genuinely concerned and have done many things to help me get better. Even though I still have pain every day, it is at a more manageable level than it was. And I have people in my life who care and try to understand. Sometimes I write their names on a scrap of paper and carry it around in my pocket all day when I feel like I need a reason to stick around.

I hope you have people to lean on and concerned doctors to help you. There are things they can do to make you feel better. Sometimes it takes a frustrating long time, but I feel that you will find something that works for you.

And whenever you need to vent or a shoulder to cry on, come to this forum. This is the most wonderful, supportive group of people on Earth.

Wishing the best for you--Cheryl

Wish I had in person support NONE. Doctors are a joke and are not helpful. I have a mental disorder and they just push me away.

How are you dancinglady? Thinking about you. :hug:

Live
 

Sometimes the biggest burden I carry from my own pain is my own reaction of feeling so sad about things I had to give up. It is very scary to have things going wrong and to not have answers too. Keep learning and with knowledge you can make it. Also keep up with other interests so you don't have to dwell on it. Keep living because even with hardship life is a wonderful gift.:grouphug:

Love your attitude tied. :hug: