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!