Re: Duragesic for Debbie and part one from Reneness

August 17, 2004

Yes, you did help a great deal . Thank you for your advice and relaying your history. It helps me to understand and how to deal with the pain that I am experiencing. I am sure it helps others as well that are reading your posts. I don't mind "Chatty " one bit!!! LOL I am glad you feel up to writing again. Thanks again. Luv, Debbierkelty wrote:

DebbieFirst, you have my most humble and warm empathy. It was that increasing burning, and a tingling that can't really have that name because it's that weird finger in the socket feeling that one dreads when one had a foot just waking up from going to sleep in a weird position. I mean, really, can you imagine having that feeling accompanied by such an intense burning that you are certain you are sustaining permanent damage == and, in many cases, unfortunately, you are.When I had the diagnosis of probable MS (before the disease pounced out of my CNS and into my lungs and other organ systems)... well , it was the magical neuro number two who told me this new symptom while somewhat rare, it was the number one reason for suicide amongst MSers, and, girlfriend, there were MANY times I contemplated suicide just because of that terrible

pain, and even more times I convinced folks I was crazy by going out in the snow with a sheet of ice for carpeting. It felt grand, let me say!(I have heard it said that something like 80 percent of Kevorkian's patients had this kind of at-that-time untreatable pain. I was also told by many docs ,since this symptom is quite pronounced in me, That this kind of pain so severe and so devastating is only shared by cancer and burn patients...)Sorry for the long personal story, but I really really understand where you are coming from. Well , now for the medical story. The first pain killer I was given was tegretol (The pain started as mitten and socks and trigeminal neuralgia) and then the very helpful neurontin. I was also given a series of narcotics or opiates. I remember being on MSContin when I went to Mayo's just six months. I also remember being on vicodin for a very long time for "breakthrough" in addition to

whatever other narc/opium.The first great stride I had in consistent pain control (all the previous helped greatly, but the breakthrough was automatic with an environmental heat above 70 or 72 degrees.-- also the neuralgia was triggered by undue stress or secondary illness) the first med to help me avoid breakthrough was klonipin, I take one milligram three times a day. 2001 to 2003 I was lucky enough to be placed on the duragesic patch. I started with 25 mcg and up to 100 for some time. I had to deal with a lot of pain during that period and I was awfully glad I had it.In the hospital when I had the terrible staph infection in my elbow and the inner tissue all up and down of the outside of my left arm. --in hospital I was on a demerol pump with a dilaudid "bump" when I had to have my gauze town off twice daily. (If you don't get that procedure, ask a medical professional what is involved in a wet to dry

wrap.Because the septicemia made my central apnea so bad, the docs took away my duragesic while I was on IV painkillers -- I was constantly having my oximeter go off while I was watching television. I was just forgetting to breathe (ooops!)When I was moved to the rehab hospital I got back on the 100 patches and used the phentanyl lollipops for breakthrough and for the wet/dry procedures (man, they should make that a torture device!). when I was released, I was still on the patches.It wasn't until 10 months after the elbow incident that I went to an oncologist pain doc. I was very surprised that I was taken off the patch and given methadone instead. The good thing about the methadone is that I can have a great deal of latitude with my dose. Mainly, I rely on 240 mg/day of neurontin and the 3 mg of klonipin/ day, Plus now I am on some kind of prescription arthritis med (I'm having a brain fart on the name) and am on HUMIRA as my

chemo which is supposed to help with pain ( I see no help with energy!)Well -- the other thing is that the neuralgia that had spread just about everywhere has mainly evolved into severe neuropathy -- and the docs give me little hope that the sensation will return. The good part is that I don't ever feel all those needle I get each week -- the bad side is that I have no gag reflex, so I end up inhaling food by accident so often. ARGH.While I'm at this rehashing my medicine history I'll hide a little footnote. Turns out my kidneys are starting to fail and other internal organs are under scrutiny -- some icky tests I won't go into. I'll let you know the skinny when I do, or I'll fake it like mad because I hate pity -- but like all humans love to be loved, I'd rather earn your love by being a bootstrap fairy than my status as bedridden w/o amphetamines. -- Oh, and I am probably diabetic, which I have only been when they pumped me up

with steroids when I had the sepsis/staph.On a happier note, the Humira us behaving like the Remicade in early days. I feel a bit better == I'm not quite as severely fatigued except for about two days after my shot (no other side effects -- no pain from the shot -- hooray! Twenty milligrams of retalin with the methadone, I am able to get up with my walker or ride my scooter (hubby finally switched the lift to the nice new van). I was able to go on a two night getaway to a state park-Brown County-we stayed in the inn like we did twice a year ago. I was not as nimble as last year, so I strayed from the expansive inn only once on my scooter== it was a pity, but the park had NO trails equipped for wheelchairs or scooters. The Inn did have several lovely lounges and a so/so restaurant.I was also forced out of town less than two weeks later on a sad occasion -- my Husband's favorite Uncle, who was childless and yet he and his wife

of 47 years showed my sons a great time during our frequent visits to the lake where my husband finished high school and where his overtly Irish uncle coached football.I was so very happy to be able to play the part of the "good wife" (my husband comes from a large Irish Catholic family and any absence of any member is duly noted -- and my poor hubby has had to wing most of the occasions in the past couple of years with the one step-son still living at home.) I was so glad all three of us were going to the viewing and the funeral. Hayden (he'll be 17 Sept.1) is a muscular 6'2". He looked so nice all dressed up, and he is such a kind a polite young man.I did pretty well. The viewing was from 4-7 (my very worst time of day for fatigue). I did call ahead and managed to get an hour's early check in for all four rooms ( the place of the viewing was a 3.5 hour drive for us, longer for others).

So.... I did well on the ride up, but for now, as long as I'm nauseated, I am foregoing riding on the sofa bed in the back (we really need to look into those back shocks!). Anyhoo -- I rode in the club seat behind my husband, because, as you remember, I had already taken 20 mg of ritalin which turns me into a normal American girl instead of a "quiet intellectual"... in fact, we have dubbed this "racing" tongue of ritalin "Chatty "(most of us are old enough to remember that doll). The only one in this house who can stand extended conversation is my son -- but he had been gone all summer and I didn't want to scare him his first week back.I hated the fact that as soon as we got to the hotel I had to take another 20 mg (ritalin is really good for folks like us. It works for four hours then is out of our system -- no half life. The docs tell me they are also limited anti-depressants. ) I also took a couple of methadone as the ride made me very

sore, Unfortunately I was just too sick to make it through all of the viewing. At seven there was to be and Elks Club ceremony, and then the family was going to trek around the lake from Kendalville to Rome City (this is all near Amish Country, about an hour north of Fort Wayne). So.... about six o'clock I had my husband take me back to the motel so he could get back to the funeral home for the Elks ceremony (when my grandfather died, he had a Masonic ceremony after his viewing and that was quite nice. Plus, it was 1990 and I was not yet ill)It was so nice of my mother and father in-law to tell me how glad they were that I was going to rest. Their son and I were already engaged when the sarc hit. Poor guy, he thought he was marrying a woman with MS, so he never expected all we have to go through and all we have to fear. I swear it was not until 1997-1998, when I lost the use of my legs for about six months, that my mother-in-law quit

asking me when I was going to get up and get back to work (like none of you have had to face THAT!) And when I was dx'd with neurosarc and multisystemic sarc, she truly became my champion. Also, I'm sure it doesn't hurt that I went from a size 8 to a size 18-20 (She's gotten down to my size in the past two years, but her legs are proportional -- I'm jealous because I look like a gnute or a spider -- my arms and legs as skinny as ever (which was even a bit too thin for a size 8). I look ridiculous in shorts or tight capri pants.)Waking up the second day was as hard as last fall for the conference. I woke up feeling like I'd been in an accident the previous day (I've been through that twice for real, so I know my simile is accurate). Even with ritalin and pain pills it took all I could muster, and I was so late that I did my make up in the car (the church and cemetery was much farther from the hotel). That day, though, my husband INSISTED I use

the scooter, so I wasn't so tired. But I was.. I was holding back tears as the hours passed by at the aftermeal at the church. All I could think of was my bed. But I only got to rest at home one day before I had to get up again and go to the hospital for my chemo. I found out there what the ritalin does for me (I used it to get out of bed and to the hospital) My BP was aroung 150/90 while my normal had been 95/55 my pulse was way over 100, where is had been 72 for as long as I could remember. I just kept thinking about it -- you have to pick what activities are worth spending at least that much time if not double or triple in bed or such. Of course, the funeral was a must, and the vacation didn't wear me out -- I could rest when I wanted.Well, Debbie ---- I've strayed way off of your question and so much on me. I'm so sorry. As for the duragesics -- you have to start slowly because they can stop your

breathing (they contribute to central apnea). They work great, though, and it was wonderful not having to suffer inevitable ups and downs as the drugs wore off. Ask your doc for the lollipops for breakthrough pain instead of the vicodin. They work great (they were developed to help kids with pre surgical fears and pain control, but there were complications with the breathing. Now they can only give them to adults already using the patch.Hope I have helped a little.Reneness, BSF ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

August 17, 2004