Where are you? I am hoping to hear from you.

Cathie

It embarrasses me to even think that my "pain" is even in the same league as the real gutsy people that have responded to my rants. My pain is just in my feet.....yes....I wish I didn't have the constant numbness and aching and reminder that it will never be "right" again, but it hasn't moved up my legs, or in my arms. I can't do the things I used to do as a young man, but I'm not confined to a wheelchair....or a cane......My HMO will NOT assist me in being referred to a pain clinic, so I guess I will have to try and find an alternative, since the taking of narcotics will also not be condoned by my GP or my neurologist. Minnesota connotes narcotic abuse. Maybe I can get involved in Tai chi or qigong.....as an alternative to traditional western medicine. I wish I would have thought of that before I had the Podiatrist chop up my feet.

Jakatak,

Reading thru this thread - yes, so many of us have had to leave our "old" lives behind and adjust and make the best we can going forward with what we have now.... and it is very very hard..... one day I was wokring hard, playing hard, and loving every day - and literally a year later really homebound, unable to work, having to use a wheelchair or walker, no longer able to eat food (only liquids now for 6 years) - and most devestating - the lost of who I was, and being a "normal" part of society... it sucks... but, I believe theres a reason and a lesson here somewhere for me, and every day try to find something to feel like I'm still making a contribution and going forward.....

Yes, there have been many nights I wonder why I'm still here - that I had a great life until I got sick and that was enough and how valuable a contribution can I possibly make going forward.... I dont have the answer...but do unfortunately have had freinds over the years decide they could not handle going forward for one reason or another and take their own lives..... the pain and suffering of their family and friends at their loss they will never know - but its intense - and never goes away..... survivors are left wondering how they could have helped, if they could have made a difference......

It sounds like you have a wonderful family - they need you and support you, even if our physical bodies are no longer what they were - you are still living in there - and that person is who is important - not the ability to run etc.... yes, debilitiong illness is a huge loss for us - but its also a bridge to something new, and its up to us to try to find it and continue on....

I'll get off my soapbox - but hang in there - we have to - life is so precious and goes by so fast - grab what you can!

Hi Jak:

Let me see if I have this straight. Your doctor won't refer you to a pain clinic, even though you are in pain.

And this is because your stat has some kind of "zero tolerance" for pain meds if the patient needs it. Because they are afraid you'll become addicted?? Is this correct?

If this is the case, I'd get on the phone to my representatives and tell them what's going on. Maybe, politically, someone Higher Up on the totem pole, well, maybe they can get you into some research program, or some protocol where you will be given something to manage your pain.

I got into a diabetes protocol at Cornell Medical Center because they were doing a 9 year study on the affect of Cardio vascular disease in diabetic women. I get all my meds and testing stuff at no cost and I get complete physicals, (head to toe), all eye testing (done by a top guy at Cornell). All of this for no cost because I am in the ACCORD PROGRAM.

You should have seen the face on the guy in the Opthamologist's office in the Cornell Building, when I was sent for my first complete eye examination. There was this case with $500 eye glasses. There were people who had some kind of implants in their eyes and they were showing me their implant cards. I never saw such hi-tech stuff in my life. When they asked me what I was there for and I said "I'm in the ACCORD program and I'm in a study protocol and I don't pay, well the look on their face was priceless.

As was the look on the face of the guy at the front desk when I gave him my appointment letter and he goes "what kind of insurance do you have?" and I said "I don't need insurance, I don't pay anything". and he goes "what kind of nonsense is that, what do you mean YOU DON'T PAY??" and I simply said one word ACCORD. Shut him right up.

The point I am making is this. If I had never looked into study protocols and various programs, I would have never found the ACCORD program and I wouldn't be where I am today.

Maybe, in your state, there might be SOMETHING to look into where you can get pain management. I think it's terribly unfair for your doctor to expect you to be in pain and not give you what you need simply because he thinks you might become addicted.

Like I said in a previous post. "Let the doctors spend one day with neuropathy" You'll see how fast they pass a pain management bill or something to that effect!!!

sending you cyber hugs.
Mlody

Jak, if it was me i would give these doc's the big flick, & find doc's that are willing to help you, if they can't then they should send you to someone who is trained in this field, like a pain doctor.
Its a disgrace to leave you in terrible pain & do nothing for you, looks like you will have to get the ball rolling yourself, by the looks of it.
All of this must be affecting your emotional status and certainly would be aggravating your PN more so.
good luck
Brian

Jak,
Just becuase your pain is "only" in your feet doesn't make it any less than any one elses! The reality of it all is... your life has changed forever! Who you are as a person has been taken away from you. That is what hurts.

That is the first hurdle we have to face when we are diagnosed with this. For me, it was the hardest. Then, it's adjusting to dealing with the changes in lifestyle. This group here has been so incredibly supportive in helping me!

Keep asking questions, no matter how goofy you think they are, keep reading posts, and keep venting when you need to. If you don't believe me, go back and read some of our old posts. I've vented a LOT on here! I'm a single woman and I've vented about not being able to find a man who will accept me like this, about not being able to take care of my kids, about lots of things... it's hard to adjust to being "different" than we were before!

A friend of mine here at work says "I shouldn't complain about the pain in my feet when the man next to me has no feet!" But I say, if your job is to go and get the food for the man with no feet, you darned sure can complain about the pain in your feet! It all depends on your perspective!

Everyone has a right to complain and we are all here to help each other through it.

Good Luck, and we hope to hear a LOT more from you!

Go back and read the 5 stages jo 55 posted. Please learn them because
someday you wil be able to tell them to another in pain.If nothing else,
your concern for them,may begin there healing!!And back to what goes
around comes around.

I've been dealing with polyneoropathes probably far longer then i know are
care to know ( there here ) it's back to one day at a time..I live by a big
teaching hospial.I was a nurse in bigger one's.But was toally surprised there
was no support group for PNers..What i know the call it the silent deseae.
Come on 3 hospitals a great rehab!! Go to arthritis support or this or that.
Even have one Dr. who was very busy as me to refresh his menory
on PR, I threw everything my record, my notes ohis desk. Almost wore me
out!! I told i can wait while you have these copied,and then you can read
it all tonight. thought there is another waste of my time.He did have
them copied. Hmm!!

My Neuro Dr. said go on-line and 2 years later i did..But first i wanted to
start a support group for those who had no computer or could not afford
affore them.

I called a chaplain friend ,asked if he could help and 2 nurse friends We
decided when,where and how many we could handle. Stared putting up
posters.We decided we could start out with 10 but nobody called at
the last min.to many did,we had a large waiting list.We went from a church
to the teaching hospital..The supprt group made the rules..The support
allowed Dr. and nurses could monitor (be quiet) they did and i hope
learned..I have beeen asked to start one at another hospital but i have
learned to PACE myself i said no!!But there it someone who will.

I learned acceptance,if you need to vent i would ratter do it in front of
the people at Neuro talk or in the supprt group,not to 3 children who love
me.I think if you put your energy in something you can still do,well anyway
it helped.I reached out and asked for help,also hard for me s.But you must,
tell your family these is a very bad i know you can't cure me but please
won't you take the time to lsten..I'm sure they will and tell them the 5
stages..And i think you just might make it to acceptance then you can get
on and do many things that make you pround and yes happy.

Not all Neuro Dr. could a hoot about PN you got 1. Having a Hmo can put
a limit on who can see,but don't put a limit on what you can do.Get out
and find your place it's there,and your here getting great advice.
Do you know how many eldery are sent home to suffer because a Dr. has
said (your just old) That should be answered and your (stupid)!!

What i'm tying to say it's your foot it hurts vent...My youngest son has
his 30 yr. old sister-law who has been throgh PN for 2 yrs..They live in your
area,she was very sucessful at everything she has ever done she had to

Sorry that one got away from my acking finger!!

She had to go on disabiliby,for a short time..But it gave her the time
to get the help she needed no shame she is back working part time.
It helped her get the right medical help..Jak look at all the people reaching
out to you!!There is always walking it gives you time to look around.
I believe walkers,wheelchairs canes doesn't matter attitude does.
Many blessings.. Sue