I don't know when it's time to give up and go on disability?
I have really aggressive case of PN. Over the last three months it has progressed from the balls of my feet up to my knees. Now it is in my hands and shoulders. My neurologist and I are communicating almost daily via email and trying to adjust my medication to deal with the pain.

I am currently using a cane.

I get up and shower, by the time I've dried my hair and dressed, I'm tired. I rest on the 30 minute drive to work, then I hit my desk and suck down my one cup of coffee. As long as I don't have to leave my desk, I can tolerate the pain until lunch, where I go out to my minivan and take an hour and a half nap. Then it's back inside for another four hours of work. I work at a computer, so walking is not a problem. It's just that the medication is making it hard for me to remember and stay focused. The pain is NOT being controlled by the medication, only "dulled" by it enough to function.

Three years ago I ran five miles a day, graduated from college while raising two teenage daughters by myself and working full time. I was a whirlwind of energy. Now I feel like a slug that is working uphill against the wind!

When I get home from work I go to bed. I don't cook, I don't clean, I do one to two loads of my own laundry a week. My children are totally independent. They drive to the grocery store, they do all the chores and cooking. I have to choose to either work, or be a mom. Right now I have to work to pay the rent.

Sorry for the Novel, but it's all happening so fast and I'm scared!
Terri

Hi Terri:

I've read your posts and you don't say if you are diabetic or if you have Idiopathic PN which means they have no idea why you have PN.

What kind of tests have you had?

Melody

Oh, sorry, It's Idiopathic PN, they've checked for Diabetes, Thyroid, done MRIs, about 16 blood tests, the electric stimulator one, and the nice big fat safety pin! Oh, then there was the "tuning fork" I don't know the medical terms for these tools, but I can describe the "uncomfortable" feelings they caused!

Terri,
If you are able to you need to find a neurologist specializing in peripheral neuropathy. There are many, many tests to determine causes of PN. See: www.lizajane.org

And then there is the other side of the coin, you may still have idiopathic peripheral neuropathy.

Billye

Yup. that's the journey that me and my Alan are on now. He has had Idiopathic PN for over 15 years.

Finally, this monday, we are going to see a doctor at Methodist hospital and it's the Peripheral Neuropathy Department.

Imagine, a department just for PN. This I can't wait to see.

will update!!!!
melody

((((((Terri)))))),

I asked myself that same question over five years ago.

I was fine while I was at work. But, the transportation was killing me.

I was out of work for a whole year after 911 because the computer support industry just tanked here in Massachusetts. I couldn't find work and I was getting worse by the day.

I finally filed for SSDI and got it on the first try.

It's a huge adjustment. The lack of money. The lack of "being a contributing member of society" -- took me a long time to get over that one.

I have arthritis in my back, neuropathy in my hands and feet and forearms and "forefeet" (??) and fibromyalgia. Couldn't take any more pain. I finally got an epidural for my back that worked (for 18 months) -- the pain is just now coming back. The Effexor XR takes care of the pain from the neuropathy and the fibro pain. I'm actually feeling pretty good.

I wish I had MONEY. But, I am glad that I stopped working. I was NOT at the top of the list and was NOT taking good care of myself. I do now.

I hope you work out what you want to do. I know how hard it is.

Hugs.

Barb

When is it time to throw in the towel? Nobody really knows. Just like you, I shoulder a huge amount of financial obligation,and also wonder how much longer can I fight this fight. But I survive somehow with God's help ofcourse. I am very religious about my spirituality,not religion.

The most important thing you can do is to get your pain under control. Pain is very demoralising & debilitating. Once the pain is being managed you can think clearly,and make better decisions. It's actually a huge bonus that your kids are independent and can clean and cook some. I am sure that helps alot.
My philosophy is to not expect some big miracle to happen and change my life. Now I just am really greatful for the small things, such as my husband cooking dinner instead of me or my son putting away the shopping.

I consider these very "small blessings".

I hope you get some pain releif really soon-

Hang in there!

Well, it's now over 20 years for me and I ain't no where near throwing in the towel! I'll be damned if I will let this PN crud ever make me throw in the towel. And part of this time was when I was having to be a caregiver to my first wife who was dying from lung cancer. Watching her die slowly inch by inch didn't make life any easier with my agnozing PN pain which none of those blankety blank ignoramous doctors recognized either. At the end of the day they just got in their Caddy's and went home to their million $$$ homes not giving a flip whether I (or her) made it thru the nite or not. There are a couple of those SOBs that I hope burn in hades for eternity. And there was a period of time there that I had to work too if the bills were to be paid. After she died I was able to fully retire using her life insurance to pay off the mortage

But give up? No, I hung in there and about 4 years ago my Internist PCP agreed to work with me and I did get control of my pain with the Duragesic Patch which I've talked about here before so will not go into all that again. Suffice it to say there is always hope and we must hang in there and keep fighting. More and more docs are recognizing that chronic pain is a legitimate medical condition deserving all the medical profession has to offer. This means hope for all of us...keep looking for that doctor who is willing to work with you and don't waste your time on the idiots that still have M.D. after their names....for them it doesn't mean Medical Doctor....it means More Dollars.

In addition to not ever giving up hope please pray that stem cell research will be allowed to continue. I can't help but notice how some of those people change their minds when they are struck with a horrible disease/condition...I'm referring to a Senator who developed cancer and his whole attitude changed on stem cell research. Perhaps if a certain radio personality developed Parkinson's Disease his attitude might change too...but in this case I doubt it - the man is probably too ignorant to make the connection.

Naw, don't ever throw in the towel but when the situation demands it by all means apply for disability....there is no disgrace in that. Do all that's necessary to make life as pleasant as possible. Work toward pain control by finding a physician that will work with you - as hard as it may sometimes seem, they really are out there. Become an advocate...join and support some of the pain groups - like the American Pain Foundation at http://www.painfoundation.org/PainAi...=page_home.htm Learn all you can about YOUR condition as YOU are your own best advocate. As the old Nike commercial use to say: Just Do It.

Hi, it is very hard to give up work, i done it about 9 years ago, it wasn't because of Neuropathy i never had it in them days, it was another serious med problem that is inoperable, i tried real hard to keep going but after 5 failed attempts of returning back to work, i knew it was time to throw in the towel, i hated having to do it, i loved my job and i miss all my work mates and the money bit to, but knowone can do the impossible, only you will know when its time to do it.
good luck
Brian

Its a very hard decision - you didnt say how old your children are but sounds like they are at least fending for themselves with food etc..... I found I had to leave work - not so much because of pain but the loss of balance and extreme fatique (and nausea - I also have autnomic PN) - it was a huge adjustment - but its really impossible for me to be able to do that now (and I can no longer drive) - and I was like you - a whirlwind of energy from am to pm.....

How long have you been with your company? If its large enough and you have worked enough hours in the last year - you would be eligbible for Famiy Medical Leave (also, your company may have a medical leave policy too) - which would give you some time off to rest and see docs - however - as Silverlady stated - its really important to try to determine the cause if its progressing because PN can become very agressive and if there is a treatment you can undergo then you should! But you need to get the tests!

Applying for social security disability can be very stressful - but if it becomes necessary - its important - and the sooner you do it the better (I waited 2 1/2 years and two court dates before it was awarded after applying)..... it does give you the right to get Medicare - but I understand your concerns regarding your kids..... also, I believe they have a program where you can work part-time and are still eligible for benefits.

Bottom line - its a very hard decision - drastic change in income - loss of social contacts - on the other hand - if you become so disabled and you havent taken any proactive steps - you could be really in financial trouble and not able get adequte medical care.

Could you have a serious sit down with your doc? Maybe this would be the place to start - and also check out your company personnel handbook and see what benefits are there for you (they may have a long term-disablity policy too).


Sending you good thoughts.....