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Old 03-16-2014, 11:56 AM #1
PATINTEXAS PATINTEXAS is offline
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Default This is a horrible disease!!!

I am 67 yrs young have had pn for 16 yrs now. I take 2400 gabapentin and 2-3 norco (10/325)a day. I still can hardly walk most days! I have an electric wheelchair for the really bad days. I get very depressed because of the constant pain. I still drive but can usually only make one quick stop at grocery store etc.
My pn is very bad in my legs- up to butt! And my arms are getting bad now. Sorry to just gripe but i can't think of anything "happy" to say about this disease.
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Old 03-16-2014, 11:59 AM #2
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Default This disease is horrible- part 2

Forgot to add that i also had to have a "spinal cord stimulator" implanted over a year ago, that has barely helped, not sure the pain of surgery was worth it!! How could i forget to add that? Gabapentin "memory block" at work huh?
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Old 03-16-2014, 12:14 PM #3
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Hi Pat and welcome

you had your 2 posts tucked onto 2 other existing threads so I have moved them together on your own thread for you
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Old 03-16-2014, 10:06 PM #4
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Default Hey Pat :)

You must have been reading my mind ! I was thinking the same thing

How in the world you've done this for 16 years just amazes me. I'm going on my 11th month since this monster claimed my whole, entire life. Nothing compared to you

Do you take something for your depression ? I'm on 40mg of paxil....was only on 20mg before all this started and I was going through chemo then. Exactly one month after chemo....Wham....SFN knocked my feet out from under me. Not literally thank goodness

I got up to 2700mg of gaba but couldn't take the side effects in my head.....the neuro dropped me back down to 1800mg gaba and added Cymbalta....I'm now up to 90mg on the Cymbalta. I take 1/2 a narco (7.5) every 3 to 4 hours and add 1/2 a Xanax when the pain gets too bad. The pain is never actually gone.

I don't drive or ride unless absolutely necessary which it was this afternoon. Only drove 4 miles and back. Never even got out of the car and all the way home I had to put my left foot up on my right knee and hold my toes ! Stinging and electrical currents go crazy when I'm in a car.

I don't even want to think about an SCS until I've exhausted everything else. All I want to do is clean my house, grocery shop once a week and cook.

And I understand about hardly being able to walk. Being on my feet at all for any length of time does me in. I do walk the dog 4 or 5 times a day in our yard because I know I have to use those muscles. It hurts like crazy and by the time I'm coming back in I'm a limping mess.

I have this in both feet, my hands and it has now started in my upper right arm. Some trouble with my legs on and off. Not sure what's going on there.

Sorry to hear about your troubles and I truly understand. I'm 51 and there is not one good thing to say about this condition.

Debi from Georgia
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Old 03-16-2014, 10:20 PM #5
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I AGREE!

At 47 I try to avoid days where I sink into a hole wondering how much worse it is going to get. Just last year at this time I could still where shoes and work. Now, 1 yr later it is drastically worse. I don't work now, or wear shoes much, or do the things I use to do.

I try to stay positive. Sinking in that deep hole of despair only makes things worse.

Welcome to the board, lots of great people and advice.
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Old 03-16-2014, 11:00 PM #6
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Default Oh Stacy :)

Quote:
Originally Posted by Stacy2012 View Post
I AGREE!

At 47 I try to avoid days where I sink into a hole wondering how much worse it is going to get. Just last year at this time I could still where shoes and work. Now, 1 yr later it is drastically worse. I don't work now, or wear shoes much, or do the things I use to do.

I try to stay positive. Sinking in that deep hole of despair only makes things worse.

Welcome to the board, lots of great people and advice.
I just added a post to your newest thread and I come back and here you are !

Shoes are my enemy.....finally found the black side things with the Velcro strap across the toes. I have to keep it loose and sometimes that doesn't even help. It's best when I'm barefoot in the house. I have no idea what I would do if I lived any further north

And yes....staying positive is huge for us. I've had some really, really bad days the last 2 weeks and trying to find the positive in anything was hard and I forget that it does get better at the time. I'm still new at this whole SFN thing and trying to find my way the best I can.

Thanks to all of you !

Debi from Georgia
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Old 03-17-2014, 08:54 AM #7
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You are certainly not alone! I am 52, and in your words I see my future. At a time when life should be less bothersome and more relaxed, I'm hit with this monster. Scared and angry, facing uncertainty every day.

What I find intriguing is how our group here on this forum are of similar age. We are still young! I'm terrified that I'll be living in pain for the next 30 or 40 years. One day of this is often more than I can stand. Sometimes I ask myself why I do it, why endure this. Subconsciously I guess I'm waiting for a miracle to give me my life back.

Because there is no physical injury proving the extent of my pain, it's difficult for my family to grasp just how hard it is for me to walk and do normal things, example dancing. If I'm having a good day, I dare not show them, for they will assume I'm better and expect me to be more able to do things.

Our monster is silent, ever torturing.

The ONLY thing preventing me from ending this existence is knowing I am not. alone on this awful journey. Every now and then someone is saved, giving a glimmer of hope.

Anyway, just want you to know that you have us. We care and truly understand your pain.
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Old 03-19-2014, 09:50 PM #8
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Quote:
Originally Posted by St George 2013 View Post
I just added a post to your newest thread and I come back and here you are !

Shoes are my enemy.....finally found the black side things with the Velcro strap across the toes. I have to keep it loose and sometimes that doesn't even help. It's best when I'm barefoot in the house. I have no idea what I would do if I lived any further north

And yes....staying positive is huge for us. I've had some really, really bad days the last 2 weeks and trying to find the positive in anything was hard and I forget that it does get better at the time. I'm still new at this whole SFN thing and trying to find my way the best I can.

Thanks to all of you !

Debi from Georgia

Debi,
Been wearing slide sandals with velcro for years. Unfortunately no support which I think adds to the leg pain. I am surprised you are able to walk barefoot. Ouch....that hurts even more for me.

I agree; staying positive some days are quite difficult. I don't know what I would do without conversations with God.


Gerry
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Old 03-18-2014, 07:58 PM #9
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Quote:
Originally Posted by PATINTEXAS View Post
I am 67 yrs young have had pn for 16 yrs now. I take 2400 gabapentin and 2-3 norco (10/325)a day. I still can hardly walk most days! I have an electric wheelchair for the really bad days. I get very depressed because of the constant pain. I still drive but can usually only make one quick stop at grocery store etc.
My pn is very bad in my legs- up to butt! And my arms are getting bad now. Sorry to just gripe but i can't think of anything "happy" to say about this disease.

I would say you are venting a bit; gripe ..Not. You are dealing with some nasty issues. l haven't driven for a few years now. So far haven used wheelchair. The cane seems to work for me. Also deal with feet up to the butt. Not nice.

Any time you feel the need to express frustration, please do so. We are all here for one another.


Gerry
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