So, now we just increase the meds and keep on keepin on.

No explanation for this confounding pain in my feet, and tingling in my hands! Just take these pills, take these vitamins, and come back in a month and we'll see how you are.

I want to exercise! I want to go hiking again! I want to jog every morning again! I want to dance with my friends! I want to take my granddaughter to Disneyland without having to ride in a wheelchair all day! I want to walk up the stairs at work without having to hold on to the railing and stop half way because the pain is too intense. I want to go to the mall and stroll through the mall with my daughters, stop and have lunch, and stroll some more. I want to go for a walk on the beach and find sea shells and treasures with my granddaughter like we used to do. I want to do all the things I used to be able to do without having to stop after five minutes because I can't stand the pain!
For God's sake, I'm only 47 years old! I'm not Diabetic! I'm not Obese! I've taken care of my body all my life! I've eaten right, don't smoke, exercised, didn't do drugs, don't drink! Why the ****am I having to deal with this ****?

I fought my way through a drunk father who beat me, a bi-polar mom who shot her self, raised two kids by myself and put myself through college and finally got my Masters Degree at 40. My life was just starting to come together at 45 and this **** comes along and knocks me on my ***! I barely make enough money at my job to pay for my two daughters to go to college, while I pay rent in Silicon Valley and am raising my granddaughter. This is the most expensive place in California to live and work, and I am making it. I pay $2000.00 a month to rent a house on the East side of town, and my daughters are both in Community college.

I have never been on state or federal aid, and have worked my *** off to get where I am today. I've taught my kids to work hard and to play hard. Now that I've got this freakin' disease, I can't play hard! I've got to sit on the side lines and watch the world go by me. I'm really ****** off. This is just not the way I want to play the game!

I don't want to be taken out of the game. I don't want to sit on the side lines! I am a tough kid, I WANT to be in there and in the middle of the game. Why do I have to sit here on the sidelines and "watch"? Please help me to understand how to overcome this. I can not accept that I have to sit here and watch. I want to find a way to get back into the game. I am not a quitter. I am not a "watcher" I have to find a way to get back in there.

The pain is really hard to deal with, and it knocks me on my butt most days, so I am forced most of the time to sit, but I've got to find a way to get past it. I've got to find a way to get through it. My brain can't just sit. As I sit and watch, my brain thinks of all the great things I want to do, and as soon as my feet hit the floor, the reality of the pain comes shooting back through me and reminds me of how real this freakin' disease is!

I guess I need some hugs today!

Terri

Lots of hugs!!!!!!!!

If it helps I can so comiserate. This all hit me at 42 and I am 44 now. I want to jog and walk miles like I used to too. It is so not fair. And now the one med Lyrica that has worked for me will be soon taken away due to my new health insurance not going to cover it. It is not on their panel of drugs. It stinks and now I feel like I am going to start all over. I am scared to death to feel all that pain again. I am not sure I can deal with it.

So here we are, pain, pain, pain...... SUCKS!

HUGS Laurie

Hi Seams:

Just sending warm hugs and fuzzies your way. ARe you on any pain meds. Alan now takes cymbalta and it does help.

Hope you have a better tomorrow.

Sincerely,
Melody

I am not understanding fully. Are you upset becuase your MRI is negative? I was really relieved when my MRI was negative. I sad thank God I don't have MS or something worse.

But most of us can relate to what your feeling. There are many people your age and younger with pretty bad PN.

You were doing good there for a while, dating, getting out there and living life. What happened?

I hope you get through this day, and remember it's only one drop in the big ocean of your life. I hope tommorow will be better for you and pain free.

IS WHAT IS positive? That's what the lists...abliet daunting at times...by www.LizaJane.org are for! Which what's are showing 'stuff' that needs the looking at?

You are not out of ANY game yet! It's just a matter of the finding out of the what's are going on, the how's it's affecting you...the the how's of treating it all. The other outside issues are adding to your stress, something we ALL try to keep down to a low HUMMM? Vent here, yes, but put your mind to it, let us help you sort out which medical 'compartments' to best put issues and then work on them.

Ask, demand some PT to help you get moving in some GOOD ways rather than add extra stress to your body then mind pains.. I know from experience that your whole brain is yelling: KEEP STILL..I won't HURT then...but. if you don't move in good ways, well, things could get worse? I was 'told' by a head honcho almost 2 years ago that IF I really had the diagnosis I do HAVE, well I MUST be in a wheelchair? I 'responded' albiet politely,that I was a-too stubborn and b-I got the treatments and therapies I needed to keep me from being so! I'm betting/hoping TRULY this doc is thinking about a 'patient' who may be smart enough to know what's RIGHT for them?

Yes, there IS the pain....Yep it is worse than sucks...it simply doesn't let up or GIVE up in it's WORK! You do NOT give up, tho..simply reach a point when the really bad, well, becomes a normal? Then you just have to be alert to any other new issues [for want of a better word] and find a way to live...Live one can. Look closer to home, life, friends, the world in general and you will be surpised at the good you can find, like here and other sources...Just like your daughters...Gee, I'd be beyond BURSTING w/pride about now! Burst away!

My heart is with you, I don't know what else I can be w/the other issues besides be an 'ear'? Hugs for the meantime... - j

I really, really found out who my friends truly are thru this process. It was very eye-opening and I now know what's what and hope much [or little] help I can expect in certain times... Sad really, but so many folks simply don't KNOW how to deal w/a chronically ill person! That's what life deals us - LEMONS - so, let's go make lemonaide!

Hi Terri,
I know even through my own life experiences that it can be very frustrating when you want to do something and your mind says yes, but your body says NO, which builds up over time and it really does get to you, this forum is a very good place to let out some of that steam, as you know that there are others here that have dealt with or are dealing with similar problems themselves and truly do understand were your coming from.

Life can be very unfair at times and its usually the people that really don't deserve it get some awfull things thrown at them and they have to deal with it.

Most of my working life i drove tour coaches but sometimes when there wasn't much work around we would do spastic school runs, and give those drivers their holidays, but anyway those little kids were the happiest little soles you would ever want to meet, even though all had wheel chairs, some were lucky if they were able to drive their own wheel chair around because some only had use of one finger or two and others couldn't because they had no use of their arms & legs, even a couple only had their torso thats all, those kids were dealt a very bad hand at birth but you wouldn't think so by the way behaved, there were so full of life, they didn't like it if you showed them any sympathy for how there were, they really amazed me and if i ever felt down about anything i would think about them and i how lucky i was, when you think about those little kids and the disabilities they had been dealing with since birth.

I hope you can find some way of working around those issues you mentioned,
all the best
Brian

I just wanted to send you this
I completely understand where your at!!
I hope things start to look up for you soon..

You know, I appreciate the people here. I know everyone can relate to my pain, my frustration, and my occasional feelings of defeat. Sometimes we just have those days that just knock us off our feet and make us want to call our mommies. If we don't have a mommy to call, we come here for a hug from our friends.
I am very very grateful that I am not disabled to the level that I can not work, I am also very grateful that I can still walk without assistance, even though my distance has been diminished.
Thank you all for understanding and being there for me when I had a bad day. I really do appreciate it!
I am on pain meds, and have been since September of 06. Just a few days ago they were doubled. I take Topamax. Some people here don't agree with Topamax, but it works for me. I've tried other meds, like Neurontin, and they don't work for me, so we are all different people and we all have different systems. That's why some of us have PN and some don't!
I come here every day, at least four or five times a day to see how everyone is and keep up with the news.

You are all like family to me and I really appreciate all the support and love you all share with each other and new people.

So my neuropathy is now in my feet, pretty painful without meds, to the point I can't walk. If I take meds, I can walk and function. In my hands lightly, just tingly for now. The pain in my feet in totally unbearable without meds. The shooting pains, stabbing, burning, cramping, aching in my calves, my toes cramp and twist up like nothing I've ever seen and they get so incredibly cold I can't stand it but I can't stand to have anything touch them to warm them up. If I don't have meds to help control the pain in my feet I would be at the hospital in the emergency room begging for help. My hands are just mildly tingly, like they are "starting" to fall asleep.
I was disappointed that the neck MRI didn't show anything because I was hoping they would find a "cause" for my PN. Something they could diagnose and treat. Something they could "fix" and make it go away!
No one wants to find something "wrong" with them, but if finding something wrong means finding something they can fix, then of course I want them to find it, so they can make this frustrating PN go away!
I am a fighter and not a quitter, But I don't know how to fight something I can't see and I have no information about. If you don't know your enemy, it's hard to defeat him.

Anyway, thanks to everyone for being there for me.

Terri

Teri,

I see you are taking Topamax and it works for you. It really helps with the pn nerve pain? Obviously it does. I may have to change to it. It is nice to know that it works so well for you.

Ah, I hate all this pn crap!! Laurie

It does work for me. I don't have any side effects either. Some people do however. So just take your time with it. I've noticed my taste buds have changed. Be sure to take extra Calcium with it, and you will notice a big change in you bowel movements, but as long as I can tolerate the pain, it's worth it to me! Good luck Laurie... let me know how it goes. I hate this pn crap too!