Neuropathy voices

No apologies for posting these quotations from neuropathy sufferers on various forums across the Net. If you're ever feeling that you must be the only one in the world feeling as you do; or you want to convince your friends or family that you're not making it up; read these, or make others read them too.

George:
'After a few experimental treatments, the numbness progressed to more severe pain. My feet felt as though I was walking in fire and ice at the same time; like wearing a tight sock with sand in it'.

Henry:
'One summer day in 1998, I impulsively bought a cane at an antique store. How could I have known that I would actually need it to help me walk within six months?'

Michelle:
'After a few weeks, the pain became so severe I could hardly walk. I would take my shoes off at work, but relief was fleeting, if not at all. I also became easily fatigued. I thought the cause could be a reaction to an HIV medication I had been taking for a relatively brief time'.

Rajesh:
'To describe the pain - it was steady and strong everywhere, sometimes shooting jagged flashes through me. My big toe would have jabs, feeling like swollen footballs. The warmth and circulation was fine. The best word I can describe the pain is gyrating: like the huge mixers in a bread machine, that go round and round.'

Mary:
'Of the myriad adjustments I have had to make, the one that looms largest is the loss of independence, particularly the ability to drive. It is frustrating to not be able to hop in the car and go to the grocery store, pick up prescriptions or drop in on family and friends.'

Tyrone:
'My Neuropathy started about five or six years ago. At first I thought I just stood on my feet too long or worked too hard in the yard that day and had leg aches. Well, the pain got worse as time passed and that’s when I went to the doctor the first time about the problem. Tylenol at night didn’t phase the pain. I began having leg pain constantly; all day and all night.'

Sylvia:
'I have had to do less yard work and give up some dancing time. I love to dance, but the pain afterwards is unbearable. I have to wear high heel shoes to work, but try to get the lower heels. By the end of a work day, my legs are really hurting. I don’t feel up to anything when I get home. I just want to sit down and prop my feet up.'

Andre:
'I am back on medication and hope that it will get better soon. I did try to participate in a Neuropathy study, but was unable to complete it because the medication made me sick to my stomach so much I couldn’t go to work, so I had to drop out.'

Cynthia:
'My life is definitely affected by this disease because of the pain. Sometimes it hurts so badly it makes me cry, which only makes it worse. I would ever be so happy if they could come up with a medication that actually worked and at least take away some of the pain.'

Eli:
'I retired at age 57 and came to Florida. Gradually my legs worsened. I could not sit through a meeting, opera, concert, theatre, movies, etc. My legs spoiled the whole experience for me and eventually I had to go and stand at the back of the room to finish the concert or movie.'

Peter:
'By late afternoon which we now call the “witching hour,” the pain would always escalate. It never failed and has been going on for about 6 or 7 years. About this time the words Peripheral Neuropathy crept into the doctors’ vocabulary. Also mentioned, lumbosacral radiculopathy. Medication continued with Sinemet, Neurontin and Elavil. There was no remarkable help from any of these three. Meantime, numbness continued in both legs up to the ankle and sometimes went up the leg bit.'

Maria:
'I can get around the home with a cane and have a series of high chairs and stools. I have a scooter and am able to go to the local shopping mall. I do most of my shopping on the Internet. My husband is totally blind and is in a state of denial about my pain. He doesn’t seem to understand that I don’t want to entertain visitors for meals or overnight stays.'

Al:
'Right now, I am very frustrated with my current lifestyle. I was once such an active person. I did a lot of voluntary work and I find being confined to the house very boring. If I did not have my scooter and computer, I think I would go bats. I try to maintain my sense of humour, but it is often to my detriment, especially with some members of the medical profession who feel I do not give them the deference they deserve.'