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Old 07-28-2011, 06:51 PM #1
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Default Do you work or have worked with PN?

How many of you still work or have worked while experiencing neuropathy? Can you tell your type of job? I am a teacher and worried about this coming year. Thanks a bunch! Danielle
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Old 07-28-2011, 07:44 PM #2
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I work full time as an optometric assistant. There are rough days, yet I am my sole support, so I have to keep at it. It keeps us going.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 07-29-2011, 06:21 AM #3
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Default I still work full-time--

--but as a test preparation specialist and academic writer, I don't have what would be called a physically demanding job, and I can make my own schedule for the most part.

Still, the amount of driving I have to do does not help my neuropathic situation much (especially the pudendal areas).
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Old 07-29-2011, 08:35 AM #4
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Quote:
Originally Posted by drwk View Post
How many of you still work or have worked while experiencing neuropathy? Can you tell your type of job? I am a teacher and worried about this coming year. Thanks a bunch! Danielle
I am interested in this as well. I have been a stay at home homeschooling mom for 27 years, am returning to work teaching high school English this fall. I only have a 5 minute drive, which is great, as I find that I cannot drive for more than 20 minutes or so without increasing pain levels throughout the day.
I have "moderate to severe" progressive neuropathy, both small and large fiber, sensory-motor, probably CMT. Skin punch showed no discernable nerve fibers at ankle, few above knee, and segmented and breaking down at thigh, so I am pretty far along with no treatment other than pain relief. I have been to Johns Hopkins for full eval and the neurologists agreed with my decision not to pursue further testing. I am pretty strong with a high pain threshold, so I get along all right, but I do get so tired and when the pain interferes with my life too much I take Oxycodone. But I will not drive when I take it, so I am wondering if teaching will be too much for me, without taking pain meds. I am on 1800 mg gabapentin, which helps with the burning and zaps but not the leg pain. My hands and arms are affected as well, writing on the board will be tough and my handwriting has seen better days.
What are your symptoms like, Danielle?
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Old 07-29-2011, 08:36 AM #5
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I own and operate a locksmith business, both retail store and road service work. I opened this business 35 years, ago.
I was finally Dx'd with PN in 1999 -12 years ago.
I am, at the moment. a sole owner operator and am in the store/shop 6 days a week at 8:30 am and close-up when I have to go out on a service call. Working on doors to the 3rd or 4th floor walk-up to sun decks- sometimes can be a problem with my legs and feet feeling like cement, as well as my emphysema - so I just take my time. Some jobs can be so difficult, strength-wise, that I just do not take the job and refer it to my son or another locksmith younger and stronger. Some jobs can become a total surprise, and it takes so much out of me that I go home feeling as if I'd been hit by a truck. I'm sore for days.
But usually I can anticipate what needs to be done, and schedule myself accordingly so that I can get the job accomplished.
It usually is the car and home lock-outs that are the most physically demanding. Sometimes I need a gorilla to have the strength to do certain problematical things.
But I'll be 67 this Sept., and am still working full time, 6 days a week- but I no longer have 24 hour emergency service. Between 5-6pm, I'm on my way home for the nite.
I take 600mg Lyrica/day and 400mg Tramadol/day in equally divided doses.
If it weren't for those meds, I'd be a cripple in bed at home. I owe my livelihood to my PN meds.
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Old 07-29-2011, 12:41 PM #6
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Quote:
Originally Posted by Susanne C. View Post
I am interested in this as well. I have been a stay at home homeschooling mom for 27 years, am returning to work teaching high school English this fall. I only have a 5 minute drive, which is great, as I find that I cannot drive for more than 20 minutes or so without increasing pain levels throughout the day.
I have "moderate to severe" progressive neuropathy, both small and large fiber, sensory-motor, probably CMT. Skin punch showed no discernable nerve fibers at ankle, few above knee, and segmented and breaking down at thigh, so I am pretty far along with no treatment other than pain relief. I have been to Johns Hopkins for full eval and the neurologists agreed with my decision not to pursue further testing. I am pretty strong with a high pain threshold, so I get along all right, but I do get so tired and when the pain interferes with my life too much I take Oxycodone. But I will not drive when I take it, so I am wondering if teaching will be too much for me, without taking pain meds. I am on 1800 mg gabapentin, which helps with the burning and zaps but not the leg pain. My hands and arms are affected as well, writing on the board will be tough and my handwriting has seen better days.
What are your symptoms like, Danielle?
Susanne, my symptoms started about 2 and a half months ago. I have had tingling through out my whole body. Right now I mostly have slight burning in my feet with some aching pain if I walk too much. I feel prickles all over sometimes and some small muscle twitches too. It has happened very fast. I feel it is due to my back. I had extreme muscle spasms in my back right before this happened. I was on vacation doing some sight seeing and walked too much I guess. I also take 1800 mgs of gabapentin each day! I have 2 children who are in elementary school. I carry the insurance for the family. It is all so scary. Thanks for your sharing. It makes me feel like I am not alone! Danielle
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Old 07-29-2011, 01:33 PM #7
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Susanne, my symptoms started about 2 and a half months ago. I have had tingling through out my whole body. Right now I mostly have slight burning in my feet with some aching pain if I walk too much. I feel prickles all over sometimes and some small muscle twitches too. It has happened very fast. I feel it is due to my back. I had extreme muscle spasms in my back right before this happened. I was on vacation doing some sight seeing and walked too much I guess. I also take 1800 mgs of gabapentin each day! I have 2 children who are in elementary school. I carry the insurance for the family. It is all so scary. Thanks for your sharing. It makes me feel like I am not alone! Danielle
That is a lot of pressure to be under, and scary to have such a sudden onset of symptoms. I hope that it means you are treatable. Are your doctors aggressively looking for a cause? Sometimes they seem to dismiss the back issues as being related.

I have the muscle twitches too, much worse if I get tired. I am teaching because I can no longer do the fine needlework I have always done and I need an intellectual challenge to take my mind off of my losses. I have 3 young adult children, one son who is a high school senior, and my youngest son is 12. I am 49.
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Old 07-29-2011, 02:56 PM #8
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Quote:
Originally Posted by Susanne C. View Post
That is a lot of pressure to be under, and scary to have such a sudden onset of symptoms. I hope that it means you are treatable. Are your doctors aggressively looking for a cause? Sometimes they seem to dismiss the back issues as being related.

I have the muscle twitches too, much worse if I get tired. I am teaching because I can no longer do the fine needlework I have always done and I need an intellectual challenge to take my mind off of my losses. I have 3 young adult children, one son who is a high school senior, and my youngest son is 12. I am 49.
I am soon to be 35. You have a lot on your plate as well. How long have you had PN? Did you not have any muscle weakness at first? Right now I don't have any numbness or weakness. The emg and nerve conduction test show no damage yet. I have had 4 Mris. Including a brain one. I haven't heard the results of that one. I have also had many blood tests. I am so glad you are going out there to teach to help you stay challenged. What area are you teaching?
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Old 07-29-2011, 04:07 PM #9
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Quote:
Originally Posted by nide44 View Post
I own and operate a locksmith business, both retail store and road service work. I opened this business 35 years, ago.
I was finally Dx'd with PN in 1999 -12 years ago.
I am, at the moment. a sole owner operator and am in the store/shop 6 days a week at 8:30 am and close-up when I have to go out on a service call. Working on doors to the 3rd or 4th floor walk-up to sun decks- sometimes can be a problem with my legs and feet feeling like cement, as well as my emphysema - so I just take my time. Some jobs can be so difficult, strength-wise, that I just do not take the job and refer it to my son or another locksmith younger and stronger. Some jobs can become a total surprise, and it takes so much out of me that I go home feeling as if I'd been hit by a truck. I'm sore for days.
But usually I can anticipate what needs to be done, and schedule myself accordingly so that I can get the job accomplished.
It usually is the car and home lock-outs that are the most physically demanding. Sometimes I need a gorilla to have the strength to do certain problematical things.
But I'll be 67 this Sept., and am still working full time, 6 days a week- but I no longer have 24 hour emergency service. Between 5-6pm, I'm on my way home for the nite.
I take 600mg Lyrica/day and 400mg Tramadol/day in equally divided doses.
If it weren't for those meds, I'd be a cripple in bed at home. I owe my livelihood to my PN meds.
Bob,
Do the meds help with leg weakness & walking ability? I do not use any meds, having given up on neurontin, et al. However, I am seriously mobility impaired and if I thought that Lyrica & Tramadol might restore my walking, I'd try them asap.

I feel I am one step away from being a "cripple in bed at home." Thanks for your help!
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Old 07-29-2011, 05:22 PM #10
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Default Keep working as long as possible.

I work fulltime in our local college, when I was teaching I tried to balance myself on the edge of the desk to take some of the weight off my feet. I now work in college management and am responsible for my own activities which helps. It means I can sit or stand or walk when I need to, I find I need to do all of these throughout the day to get by. I also have a small footstool with a moveable top under my desk so that I can keep my feet moving, this keeps the swelling down.
Working for me is a necessity as I would just wallow in pain if I didn't keep going. Weekends are bad as I collapse in a heap and sleep, pain is just so exhausting.....
My advice is to try to keep as busy as possible throughout the week, I cant advise on weekends as I haven't found the solution yet
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