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Going Backwards

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Old 03-06-2009, 10:54 AM   #1
Doxie
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Default Going Backwards

I would very much appreciate your comments on what has been happening to me and my PN.

I was diagnosed in August 2005. I had some rough years until early 2008 when I had a spinal cord stimulator put in. After 5 months, I began to enjoy a 30-40% decrease in pain. (Side note: Drs. expected a 25-30% reduction. I was their first PN patient and they are pleased with the results.)

I was able to reduce pain meds by 50% and began to excercise and walk. I have lost 20 lbs. Some days I had only minor pain until late afternoon, some days the pain would increase by 2:00 p.m. I was thrilled and doing well.

In January of this year, cold and rainy weather began to effect me all day, several days a week. That lasted until mid-February and now I am still not at the levels I was experiencing last Fall. The weather is good, I am struggling. I have an appt. with my neuro for early April but am interested in hearing from any of you.

My hands are now tingling and getting hot & red in the evening and they have not done this since the early days. My feet are more painful by about 10-15% but what has increased more is the tightness (glove & stocking???), redness and tingling. Sometimes adjusting my implant helps with the tingling, sometimes not.

It appears to me I am experiencing a set back.

I would appreciate any comments!

Have a great week-end all,
Doxie
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Old 03-07-2009, 10:17 AM   #2
EarlG
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Default

Quote:
Originally Posted by Doxie View Post
I would very much appreciate your comments on what has been happening to me and my PN.

I was diagnosed in August 2005. I had some rough years until early 2008 when I had a spinal cord stimulator put in. After 5 months, I began to enjoy a 30-40% decrease in pain. (Side note: Drs. expected a 25-30% reduction. I was their first PN patient and they are pleased with the results.)

I was able to reduce pain meds by 50% and began to excercise and walk. I have lost 20 lbs. Some days I had only minor pain until late afternoon, some days the pain would increase by 2:00 p.m. I was thrilled and doing well.

In January of this year, cold and rainy weather began to effect me all day, several days a week. That lasted until mid-February and now I am still not at the levels I was experiencing last Fall. The weather is good, I am struggling. I have an appt. with my neuro for early April but am interested in hearing from any of you.

My hands are now tingling and getting hot & red in the evening and they have not done this since the early days. My feet are more painful by about 10-15% but what has increased more is the tightness (glove & stocking???), redness and tingling. Sometimes adjusting my implant helps with the tingling, sometimes not.

It appears to me I am experiencing a set back.

I would appreciate any comments!

Have a great week-end all,
Doxie
Have you tried Lyrica? This drug certainly changed my life. It is a new drug for nerve pain and is very effective. Check with your Neurologist.
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Doxie (03-09-2009)
Old 03-08-2009, 12:21 PM   #3
Doxie
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Default Please help

Thanks so much for responding, Earl. I really appreciate it. Yes, I tried Lyrica and the side effects were just too much and overall made me worse. Can't handle neurontin either. I'm pretty sure that I've tried everything there is both OTC and by prescription.

I guess, more than anything, I'm looking for some reassurance that I am not the only PN'r who experienced a few months of feeling better followed by a set back. And, if so, did the good days ever come back??

Thanks all,
Dox



Anybody???
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Old 03-08-2009, 12:56 PM   #4
dahlek
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Default Setbacks often..

come with the territory.
Now it's up to you to eliminate all that you've eaten, drank and supplemented with-PLUS the outside stresses that you have been under [not to mention those you impose on yourself...we all do] and be a 'detective' of sorts to be a bit more astute than the docs in eliminating the zillions of possible things that could be making things better or worse.
It's not easy, you almost think you are going crazy at times? But it pays off in the end. Research hard, sort things out in YOUR mind and present it to your docs as what I call 'silly questions'.... Their egos are less threatened that way.
Get to work and keep hope always! 's - j
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Doxie (03-09-2009)
Old 03-08-2009, 01:18 PM   #5
Hope15
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Originally Posted by dahlek View Post
come with the territory.
Now it's up to you to eliminate all that you've eaten, drank and supplemented with-PLUS the outside stresses that you have been under [not to mention those you impose on yourself...we all do] and be a 'detective' of sorts to be a bit more astute than the docs in eliminating the zillions of possible things that could be making things better or worse.
It's not easy, you almost think you are going crazy at times? But it pays off in the end. Research hard, sort things out in YOUR mind and present it to your docs as what I call 'silly questions'.... Their egos are less threatened that way.
Get to work and keep hope always! 's - j
I swear dahlek, I love your posts and always find them hopeful.
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Doxie (03-09-2009)
Old 03-08-2009, 01:22 PM   #6
dahlek
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Default Aww, SHUCKS!...

Sometimes I feel as if I browbeat folks. But, I can't do your work for you! Only YOU can!
And, I've not the energy to spoonfeed what is already out there anymore. Call me selfish?

Only other thought that comes to mind is:
WELCOME TO THE HAMPSTER WHEEL!
Apologies to all hampsters, of course! - j
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Old 03-09-2009, 11:48 PM   #7
Doxie
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Default Am already crazy...

Thx for the response, Dahlek, and I think I've already gone crazy already. I started a journal in January to help me track down changes that may be causing both good and bad days but other than adding a tiny amount of dark chocolate to my diet (that I have now dropped) I just can't get my arms around what might be happening. I do put a LOT of stress on myself and the worse I feel the more stress I have and on goes the circle of pain.

We had a weather front move in today and the PN just kicked my backside today. The Hampster Wheel was really moving!

Thanks again Dahlek, Earl and Hope,
Doxie
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