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11-18-2006, 11:19 PM | #21 | ||
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Peripheral neuropathy and neuropathy usually mean the same thing. When "neuropathy" is used, it generally just means that the "peripheral" is assumed.
rose
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I will be adding much more to my B12 website, but it can help you with the basics already. Check it out. . |
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09-09-2007, 04:35 PM | #22 | |||
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For all new members.
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09-09-2007, 09:30 PM | #23 | ||
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i am a teacher and i can hardly take it anymore i am like the perso who said:
If I'm not at work, I'm in bed. I don't cook, I don't clean, I don't shop, I don't go out for any reason. When I come home on Friday evening from work, my car does not move until Monday morning when I leave for work. i have to work for my insurance and house. l look fine, but my pain in my legs is at a 7 or 8 most of the day when i try to walk even to the bathroom. i need a wheelchair but i will not get one yet plus i cannot afford the can to get it to work. i wish i had some control of my pain. i have idiopathic PN so no one has been able to treat it yet. i think working is great if you can get your pain down to a 4 or 5 then you are distracted. my pain used to be like that and even though it was challenging, i had grace and pride, but when it goes up so high like mine does now i just want to lie down on the floor and die. i often wonder what the sense if of going on. today my husband took me in the push wheelchair (they are cheap) to look for a new purse. can you imagine? didnt find one of course. only we know how tired we are. many will wonder how we can even go to work, but the street is very cold at night and i would make a really ugly bag lady. pray for a cure soon. steff |
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09-09-2007, 11:04 PM | #24 | |||
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Steff - have you tried the Duragesic Patch or it's generic form - Fentanyl Transdermal System???
I've had sensory painful PN for over 20 years. A little over 5 years ago I started the Duragesic Patch and my life literally changed. My 7 to 9.5 pain went to a 2 to 4 level in just a few days. I am now 75 years old and no longer work but feel sure I could if I wanted/needed to. These patches contain the narcotic, Fentanyl, but I have had NO side effects other than constipation. No "highs" or zonked out feelings. My hands are steady, eyes are clear, and I have full control over all my faculties. I drive my car without difficulty. I have always tolerated medicines well and if you do too then this might really help you. Ask your doc to let you start on the 50 strength patch and then titrate it until you obtain good relief. Shouldn't take but a few weeks to find out...be sure and give your body enough to time to adjust - it almost always does if given sufficient time. I am now using 125 strength and changing the patches every 2 days. If you haven't tried this give it a shot. The biggest problem might be in finding a doctor that will prescribe it for you as far to many are unwilling to work with patients in chronic pain. Good luck.
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09-09-2007, 11:16 PM | #25 | |||
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I somehow managed to tough it out and work the first eight years I was sick. It was absolute hell, and the only reason I got away with it so long is that my husband was able to drive me there and back. By the time I had to stop, I was constantly falling asleep at my desk, making major errors that I would have to fix before they were discovered, making unscheduled potty breaks as often as once an hour, etc.
My primary rheumatologist told me in 2004 that I should go on disability. By 2005, when I had to go on sick leave for a lymph node biopsy, most of my eight doctors were in agreement with the rheumy. I took what I thought was going to be a five-month leave of absence to get my health issues in order, but I never recovered enough to return. How I wish I could be gainfully employed! My poor husband has to slave away at a job he hates because he needs to make a certain dollar amount for us to keep a roof over our heads. When I told him I wished I could trade with him (we were in the same line of work), he considered it for a moment and then said, "Wait, does that mean I'd have to be sick then? No thanks!" I do admire those of you who've been able to suck it up and keep working. Because of being on disability, I could no longer afford to live in Denver and had to move to Sioux Falls where the cost of living is about half. I don't fit in at all here and have dreadfully substandard insurance and doctors. But we do the best we can with what we have, right? I am able to get out of bed most days even when I can't leave the house. fanfaire
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Sjogren's, neuropathy, gastroparesis, diabetes, celiac, Raynaud's, hypothyroidism, fibromyalgia, chronic myofascial pain, periodic limb movement disorder |
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09-09-2007, 11:54 PM | #26 | |||
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exhaustion and fatigue are reall issues for so many of us. Sometimes I am so tired I think I'm going to collapse on the ground. I have been known to hide under my desk and contemplate getting back up.
May I make a small recommendation to those with fatigue. Dandelion tea. cleans liver and what a quick lift. I live on dandelion tea. I also am holding on some days by the skin on my teeth. I need this job really bad because we would loose or house right quick without my income. I'd loose my car, and god only knows what would happen to us. So I pray for streghth every day from God to keep me able to work. That is my only prayer. Not a cure,not the lottery, just let me be able to work. |
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09-09-2007, 11:57 PM | #27 | ||
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hey fanfare-
i hope you have some joy anyway-i rarely do. it sounds like you have a good husband-that is worth its weight in gold-in that i am lacking hey dan- had no trouble getting the fentynal patch 25. here is the prob. it says may stop breathing and dont touch the patch with your magic finger, and dont look at the patch if you have just had cherries and dont put the patch on unless you can do ten jumping jacks and dont throw it away unless you live near a toxic dump-all kidding aside, it scared the hell out of me and when i called the doc back and asked how it might affect me, she never returned my call-so i am going to look into it again-but i do not react well to drugs. i hate them i felt the best in my life when i took nothing, but those days are over for sure. it seems to me men do better on the patch but if it would help with pain so i could work better -then i will see not right away but maybe over thanksgiving the prob is that my husband could care less if i drop dead-in fact if i passed out on the floor with the patch on he would ignore me- so i have no one to help me with the beginnning of the test as long as i go to work and make the money he could care less how much pain i am in- sorry to cry baby and change subject steff |
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09-10-2007, 12:07 AM | #28 | |||
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I really do. we must start a thread on "support". there are so many of us who recieve no support from our spouses.
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09-10-2007, 12:35 AM | #29 | ||
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I feel so sad for you who have no spousal/family support. My husband is wonderful but I do feel so guilty about not having been able to work for the past three years (other issues prior to PN).
Being unable to work is something that really bothers me a lot. I feel that I am not pulling my weightfinancially and even at home I have not the energy or motivation at the moment to do much at all. I try to set small goals only. Fortunately we have no mortgage and no debts but there are always plenty of bills which seem to eat up what is there. We have certainly been thinking quite a bit in the past few weeks about what in our lifestyle may have to go. One thing neither of us want to let go (if it gets to that point) is our hi-speed internet connection which we see as much more valuable than cable TV. Having said all this we are generally very blessed and we are certainly not starving....but it does warrant thinking about. |
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09-10-2007, 03:02 AM | #30 | |||
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at night. So I am lucky to work 1:30pm - 10pm. It helps me stay calm when I can't sleep knowing that I don't have to get up too early. My job is very stressful and somedays I just hate the thought of having to go in. I have thought about disability, but I am afraid of doing anything that would jepordise our home, etc. Luckly I have had very understanding supervisors and have kept the Family Medical Leave Act in place so I can't get into trouble if I need to miss days at work and if I run out of leave time, they still have to pay for my insurance.
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. ~Julie~ "With God's help you can smile through the pain and find joy in your journey": . |
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