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

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.

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).

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?

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.

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.

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?

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!

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:(

BOB you are an inspiration. Just goes to show by ignoring the stupid pain you can still have a productive life.
My job was a very high profile position running motivational seminars in combination with mega sales for the motor industry. This involved me running around for 16 hours setting up and running the events in an expensive suit and business shoes and my feet hurt BEFORE I had PN :eek:
so my career is over :(
The initial loss of my embarrassingly high income hurt but as time went by I realized that I didn't need that much money with PN, kinda obvious that my flash lifestyle of traveling, skiing,yachting,late night partying was over anyway.
I trade the stock market theses days and I can tell you that in those 6hours Im very focused away from the pain so much that i dont remember it until its all over and it comes flooding back.
Distraction works pretty well.

"My hands and arms are affected as well, writing on the board will be tough and my handwriting has seen better days."

Suzanne
Most teaching nowadays is done on a Smart board, you can use PowerPoint presentations with these and they are hooked up to the Internet so you can show video clips, you can also type with the computer as you are going along(saves the writing). Teaching has changed so much in this new electronic age, my tip would be to try to get another English teachers presentations and amend them to suit yourself( this way you won't be typing the full course as you go along as this would take ages).
There may be training on using this technology that you could prepare over the summer. Good luck:)

This is a small private school with minimal budget, conservative ways, and zero technology. My daughter teaches high school English in Philadelphia, they have smart boards and power point, but that is about it. I appreciate your taking the time to suggest this, though. Perhaps things are very different where you are, but here teaching is pretty low tech in general.

I put in a request at work to telecommute, something a teacher cannot do. Anyway I am a Programmer/annalist, and most of my job can be done with a computer, the rest is meetings which can be done over a conference phone. I put the request in, informally back in January. I did not get an answer until April. A big no. The reason given was that they have "no work at home policy". And all work from home should stop. As many of you can relate there are good days and bad days. The 45 minute commute was a horror. On especially bad days I would have to pull over to the side of the road and scream.

Anyway; I finally had enough, one day, I had a particularly bad day and wanted to go home. But because all three of the other programmers where absent, I was obligated to stay. It was hell. I filed for Temporary divisibility and have been off work since May. I also put in a formal ADA request for accommodation. My Dr. has been slow to respond but agrees that the only way I can work productively is from home.

Until someone can figure out how to solve complex problems while in pain I will need to work around it. Working through it actually helps as mental distraction is the best pain reliever I have found, but as soon as the phone rings or someone drops into my office the pain comes back like a ton of bricks.

I give credit to all who work and/or are parents too. I have been off work and school since this condition started. I hope one day to go back to college and work again. I think I will start though with a volunteer position. A lot will be finding a position that I can do with the limits. Sending good thoughts

Thanks Daniella! I wanted to share with you that I belong to a FB group called Support for Neuropathy. It is a closed group, so none of your friends can read your posts only the group members. It is mentioned in the Neuropathy.org newsletter this month. You can also contact Jessica Benjamin through FB if you would like to join. It is a great group and has helped me a lot.

Thank you for the FB site. I just joined one for RSD but will join that one too. I never knew on FB there were groups like this. I find support of people that deal with the same so helpful. Sending pain free thoughts

I work as a teacher also. I was diagnosed with PN many years ago, but the neurontin made me "dizzy" so I have not really been taking anything for it. Lately the pain has become more extensive ( I think including pudendal neuropathy). I have been able to do my work w/o much trouble. The pain gets worse later in the day. I will be going back to a neurologist as soon as my husband's back surgery is finished and he is up and about again.

How were you diagnosed with pudendal? What are your symptoms? I believe I have that (in addition to peripheal) but have not been to doctor recently. I'll go again once my husband's back surgery is finished in 2 weeks and he is up and about again.

Hi Fran,! Thanks for responding. What area or grade do you teach? What is pudendal neuropathy? I haven't heard of it... Is your neuropathy idiopathic or do you know the cause? As of right now I don't know what has caused my issues. Thanks for sharing! Danielle

Pudendal neuropathy--
 

--refers to compression or overstretching of the pudendal nerve producing symptoms of pain, numbness, tingling, etc., in the pudendal nerve distribution, which includes the **** and genital areas:

http://www.pudendal.com/

http://www.pudendalhelp.com/home.html

I am a teacher and it has been ok. I seem to get worse more towards the end of my teaching day. I have not missed work because of it.

I teach accounting on the high school and post secondary level in the same school. I actually heard of pudendal neuropathy from someone who answered your thread. In addition to burning and tingling in my hands and feet, I get a burning in the genital area (I believe that is the pudendal from what I read). I haven't been back to a neurologist in many years so I do not know what kind of neuropathy or the cause. I plan on trying a different neurologist soon. Have you been to a neurologist? What grade do you teach?

I am a primary teacher I teach first grade. I have been to a neurologist about a month ago and I will see him again this week. It is all so overwhelming. I sent you a message on your profile page:) Danielle

I'm a computer programmer... yeah, I drive a desk :) ... I've been having the tingling, pins and needles, electric shock and cold feet for almost 5 years now... I try to get up at least once an hour to walk a little or do some stairs... that seems to help...

Ed, small world! I live near Columbus:). I am glad you are able to take breaks and you are continuing to work! Danielle

Sfn..ouch
 

Hi! Sorry to hear about everyone and their pain...Danielle I sent you a private message.
I have SFN in both feet (my right one worse), but I went through the ringer to get the diagnosed. My PM Dr suggested the SCS (spinal cord stimulator) I am not sure about that one yet. I worked part time in AZ then moved to Seattle..so now I am a stay at home mom.
I wouldn't mind working again..but all the meds I am I would be better off at a work from home job. I have no idea where find one of those.
Thanks for the FB suggestion I went to the site and requested to join.
It is nice to "talk" with people who suffer from this awful disease.
Oh ya, my neuropathy is idiopathic as well...which sucks even more.
I congratulate all that work so hard and make it through the day, you are much stronger than I am :( one of these days
Now my biggest goal is to not only feel better, but to have another baby!! How do I do that when I'm on all these freaking meds??!!
Anyway, sorry for the little pity party and vent haa haa.
Good luck and I am here to talk anytime!!