pain/how do I deal with it?

• By pdecrease
• Posted February 20, 2008 at 7:42 am
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My son too suffers from a lot of pain. He has shooting pains as well as tightening and spasims. I recently found a "pain management" doctor but we have to wait until April to see him. Where do you live?

My suggesstion is to ask a nurologist for a referral and be specific. Hold on don't give up - keep up a search for the right doctor.

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• By tfox
• Posted February 20, 2008 at 12:44 pm
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I'm sure the help is out there somewhere! As a matter of fact, I saw deal on national news last night where they're now using electrodes on the scalp targeting the area of the brain where pain is felt with remarkable results!
I have an implanted pump that delivers medication for spasms, but I think they're used for pain too (might be something to look into). Also, use the internet. There's bound to be an answer there! You also mentioned you'd like to be paralyzed as to not feel anything. Well, I'm paralyzed and feel everything so be careful what you wish for!

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• By cking131
• Posted February 20, 2008 at 3:19 pm
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I deal with the same issues, however my sympathy for anyone who is paralyzed in any manner because it is not an easy challenge. Stay positive because you do not want to wish this upon yourself. I would continue to face the challenge as effectively as I could and wait until science catches up with your symptoms which I believe it will do in the near future.

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• By MINDY3
• Posted February 20, 2008 at 9:57 pm
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I too suffer with pain day in and day out. I tried pain therapy which helped a bit. My real reason for this comment is this: whoever thinks we paralyzed people don't feel pain is sadly misinformed. Since I am a C6 quadriplegic, my pain is felt from my chest to the tips of my fingers and toes. I was told that I just have to learn to live with it. Prayer helps. So does a heating pad on my pillow and a bonnet hair dryer for my toughest times. Pain is hell, but remember this... those of us who are believers in the Gospel will be transformed with new bodies when we go to our place in heaven.

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• By windtalker
• Posted February 21, 2008 at 1:52 am
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dear group;

larrtbw ,i know that i get "blue",especially with winter in ohio..they call it "cabin fever"..the lesser amounts of sun,and-i believe the energy i encounter here,where everyone whines about the cold..while few deal with the daily pain that you and i and most everyone in this community deal with..only you KNOW what you are dealing with..we,having similar injuries,have a pretty good idea,and can empathyse..-cause i have learned the only place in this world you find sympathy...is in the dictionary..somewhere between shi..p and syphyilus..;-)
...the way i have been keeping myself away from the edge of the presipice,jumping in front of a speeding bus,,sky dive without a parachute,ect....HUMOR....
..tune in a show that makes you laugh!...some of the old bugs bunnt/roadrunner stuff i still roar with laughter at "animal house" i watched "the hitchhikers guide to the galaxy",and the parts about how the mindless beaurocrats and how they got that way --along with a great shot of endorphins from laughing,gives me some comfort as i battle these people while trying to get benefits from these clerks with their agenda....
--the idea is where you find something that makes you feel good....i find laughter IS the best medecine-to borrow from readers digest..
--i also use a trick i heard of that came from prisoners of war-in the viet nam era..they were alone in their cells,and had to be quiet..you couldn't lay in bed,you sat on the floor or stood all day untill bedtime..what i heard was -to keep themselves from going crazy-because if you only think of your situation-it only makes it worse-they would think of themselves back home,surounded by family-friends-their best gal,ect..many would think of the house they wanted to build..lay it out,..where would the bathroom be...would the kitchen work better over on the other side?..then-inh their mind,build it!..cut each board,hammer each nail..
--while not imprisoned,..my body can be "less than other peoples"..and while many are-indeed,in a less desireable situation than i am,it still sucks..where in today's current hysteria about "DRUGS".(O.M.G!!).. and all the "opi-o-phobes",who have been frightened by the drug natzis(dea),and i have to go to my doctor EVERY MONTH,and have a hand written permission from a person who has people looking at his records making decesions about my treatment(do their agents have a degree in medecine? and if not,isn't that "practicing medecine without a licence?.can we put them in jail for that? if they catch me with my medecine,and didn't have "the proper paperwork-",i-e,"permission",that's where they would put me!!)
--as the old movie title put it--"IT'S A MAD,MAD,MAD,MAD WORLD ! it's enough to drive you crazy-if you let it..
...i'm not saying you should walk around with a smile plastered on your face-while inside you feel like crap,but TRY to find a reason to smile,be happy..the diffrence won't be immideate,but after a while i started feeling better despitea c4/5 spontaneous fusion with my bone spur pressing on my chord..the origions of that saying"a pain in the neck",
--bobby mc-farin's "don't worry,be a hippie",..my own little "modification" to his song..something else i do to keep my mind distracted..and-it can be fun!..and why not?? "wierd" al yancovitch ,rather than follow his father into the party polka circut,took the acordian into a venue no one had done before rock and-or roll!!another place i find humor..how many out there have heard "another one rides the bus"?..being a former bus driver,it holds special meaning..

..being in los angeles,you could go to the beach and watch pretty girls frolicking on the sand in bikini's!..go over to farmers market and tourist watch,..all kinds of fun stuff you can do that i miss being able to do,as,when my pain got to where i couldn't work anymore,mommy had me come home-mutch to the displeasure of my stepfather(my own little version of "days of our lives"-another case of "soap opera syndrome" where in addition to my physical problems,i have people in my life who continually try to piss me off..what i find gets to them-is when they try to ..aggrevate me..i smile and wave..reall friendly like..i learned this while driving that bus in los angeles traffic..many people would get preturbed when i would pull my 17 ton,fourty foot 12 foot tall bus " in their way",they would blow their horn and yell furiosly at me..the maddest i ever saw anyone was a cabbie ,when i smiled and waved real friendly at him for "letting me in"..it still makes me laugh..point being- don't let ANYBODY push your buttons-especially your mad-sad-sorry for myself buttons..there are many sad-sick people who get their jollies from making other people miserable....we ,along with most people in this world-even those without disabilities,have enough of -without some JERK adding to them..this is the same kind of thing we all dealt with in high school!?! and the truly sick one's were the ones who mocked someone with disabilities!!....i comfort myself in the knowledge that -karma does work!..i have seen it a few times,enough to let life take care of "those" people..

--like the blues song -"keep on smilin through the pain-laughin at the rain"..
..

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• By Vinny
• Posted February 22, 2008 at 10:15 am
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There are are numerous alternatives to drugs, which can help with pain relief. Acupuncture, hydrotherapy, working out, and yoga, just to mention a few. There are good Drs, pain specialists and pain clinic psychologists, out there. How long have you been experiencing pain and is the pain neurological or physical? As a quad. I can tell you that being paralized, is not a pain free condition, so be careful what you wish for, it may just come true. I hope and pray, you find help somewhere.
Stay Strong

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• By larrtbw
• Posted February 22, 2008 at 11:34 pm
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I have a neuro-stimulator implant in my spine now, which I have had little relief from it. The doctors wanted to do a pump implant but I was reluctant to have it done becouse just like my pain killers, your body gets use to it, and you have to increase the dossage! Then what? About wanting to be paralized, I was just lashing out in desperation, as I am just worn out from the pain! And my heart goes out to anyone that is, and I wish to God that they would find a cure, or a bridge to gap the break in the spine, so you could walk again. I guess I am just bitter at all the doctors I have come into contack with my back, they are more interested in making money off me, instead on sitting down with me and really discussing what my options are. The last comment from my pain doctor, was well you know your spine is trashed, and I might have one good vertabra in my back, and I will just have to learn to deal with it. And he is the one that got me hooked on pain killers! How does your pump work for you tfox? I am allergic to morphine!
Please let me know at larrybw@yahoo.com Thank you for your comment.

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• By windtalker
• Posted February 24, 2008 at 3:22 am
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dear pdecrease ;

a real neat feature with this website is when i'm signed in,and float the "cursor" over a members username,a box pops up with their info,and usually -if they 've filled it out-their location..as you'r in new castle,deleware..i'm near cincinnati,in lebanon..this helps especially when trying to help people find help for a problem,as one woman was posting where she could use a shower chair as her son was coming home from hospital..i am a member of a interesting group on yahoo called "freecycle",where people post things that-many times would end up in a landfill,or at the curb..well,rather than "dumpster diving",these peoplke will let you know ,and set up a time to pick it up!..
..i think this is a WONDERFUL idea,as many times,especially with medical gear,there is a lot of useful things setting in storage that would be helpful to others..except for the shipping,as we,as a group,are scattered -literally -from coast to coast,, something like that might be a good idea here..but,maybe someone local to you might have things to make life easier!??!
so,i recomend to all here,check out your local freecycle,..you never know..i just got a nice vacum,it needed a cleaning,but works for me!!

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• By larrtbw
• Posted February 24, 2008 at 2:50 pm
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I am sorry to hear that your son has pain. I live in Harbor City California I was hurt on the job seven years ago. I went from a maintenance Manager, with a very busy life, and loved working. To lieing in bed most of the time, taking pain killers and lately feeling sorry for myself. But this has got to stop, and I am going to pick myself up again and give living a try. Has your son tried cold packs on the area? That helps me sometimes. Also try back massage as that has actually got me out of pain for a day, and slow stretching. But go very slow so you don't put yourself into a spasm. Spasms are my biggest nightmare. As last month I had to go into emergency twice where they had to literally knock me out with demeral for two day flat on my back at home, then I went into spasms again, and again the same thing. finally this worked and the spasms stoped. Thank God I am no doctor so I will give this only as what has worked for me. And what ever doctor invented fussions to me must be nuts. And they forget that the muscles around the injury sight will never work again, thus the spasms. An example, Lie in bed for a year and see how well the muscles work. It will take years to get back what was lost..
I feel the only way doctors will get people out of pain is with an artificial disk that has full movement. Germany has one, but there are complications with Arthritus forming around the implant stoping motion and again causing pain. So again, what to do, what to do?

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• By larrtbw
• Posted February 24, 2008 at 3:04 pm
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Wow, this really sounds like a great idea. maby I or someone who knows how to set up a web page could set up a site where people could buy or give equipment they are not using to people in need in their area. As we all know how much medical equipmant costs, you can buy an electric scooter from pep boys automotive for several hundred dollars, and if you buy one from a medical outlet it costs $600.00 up. I guess that is why I am so peeved at the medical community as a whole, as it's about the mighty dollar instead of the person in need.

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• By pdecrease
• Posted February 25, 2008 at 7:39 am
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Totally agree about the "location" feature! Thanks for the info on freecycle. Can you post items you might want to share? We have a stand-up machine my son refuses to use that was given to us, so we don't want any money - we'd like to give to someone who will use it!

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• By windtalker
• Posted February 26, 2008 at 5:18 am
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that sounds like a really neat piece of gear!..what does it do?how about the owners manual/assembly instructioins..have you got like a website where they sell or make them-that might tell someone-like me -who is ignorant of what this thing does,how it works,what might need fixed(batteries,ect)is it like a stand up wheelchair
'-cause i was thinking of something like that as some could use it..it would even work for short people who are tired of a view from crotch level..who knows??it could work!!--yes,you could post it there ,along with broken refrigerators,and a used sofa nobody wants,,i think if those "special needs " devices were assembled somewhere here for people who needed it would be better than like medical devices,like a wheelchair left over from someone's passing used as a extra chair in the party room..i'd rather something like that went to one of those thirld world orginizations that take some square tubing and bicycle wheels,and fab together a low cost-rudementary wheel chair or some third-world child who-otherwise-would never see one,let alone have for their own..one story was in africa,this man had glued together a three whelled bicycle,and a "whizzer" motor a small gas engine hooked to the fromt wheel,it made the five miles he traveled for food and water for his family a lot easier...i week after they ran his story,someone stole it!!what can we do in a situation like that??..all we can do is what we can do..

it's like someone this month was talking about a "chi" machine..i dont have any idea what it does,but-it siunds interesting....i was ceven intriuged when touring a museum near here about the amish,and some of their inventionslike the circular saw blade came from a woman using a spinning wheel..

they had a adult sized bed,but was on the idea of a rocking motion-like you would for a baby,but made it bigger so when grandmother got old and sick,the rocking motion might make her time here a little more plesantthey had it fixed where a person sitting in a rocking chair,could put one foot on a board,and make the cradle rock!!well,we,not being amish,might be able to put a electric motor on it,with a infared remote control where you could control it from the beda nice goose down matress with some hand-made quilts to top it off,and you would have something out of "house beautiful" ..functional and beautiful..and all for about the same money they chargefor a hospital bed (has anyone SEEN what retail is on some of this gear??
outrageous!!..if someone outhere knows how to get research and development grants,or knows how to write proposals,i'm thinking ...a colaboration??..we could maybe help a lot of people,and make a few coins in the process..i hear where the guy whi invented"big mouth billy bass -the singing fish? sold a fer billions of those stupid things..why not a new bed? even whiny babies and children might benefit!?!!
well,you have my web address,get ahold of me..and let me know more about that stand up machine-k?
love and hugs to you and yours!
windtalkerr@yahoo

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• By pdecrease
• Posted February 26, 2008 at 7:14 am
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I don't think we have a manual, but I'll have to check around. Not even sure at this point the manufacturer. It's a seat/bench at chair level. There is a handle that you pump that pushes your butt up. Your feet are placed in position on a platform and your knees get pushed against pads, so the knee portion and seat actually hold you in place. There is a table area once you are in a standing position. It is awesome for circulation. There are two wheels on either side you can turn to roll around the place it's actually on wheels. For getting around a kitchen to higher cabinets it's great!

My son gets dizzy when he's in it and has trouble breathing. His paralysis is from the chest down. It's probably his heart has to work so hard to circulate blood and oxygen when he's in that position. We thought after use he'd get used to it, but it wears him out and he does not enjoy it. He says his paralyzed legs actually tingle (he has a complete severage) and he can feel the bottom of his feet - like pins and needles.

I can take a photo of it and probably will try to list on e-bay. If we don't place it that way, my son suggested taking it to the rehab center he was at and offering it to them. However, they have two other types and I'd rather see someone that really needs and can't afford receive it. I should post a blog about it on here, then I could always email photos to someone local.

I love that bed idea! My husband would give an arm for that! He was a sailor back in a day and loves the rocking motion while sleeping. When he first got out of the service he used to rock himself until he fell asleep! Too funny.

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• By MINDY3
• Posted February 26, 2008 at 8:54 pm
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I'll take that standing frame, no matter where you live! (I live in California.) Please e-mail me at mstmartin1@verizon.net Even if you decide to sell it on e-bay, please contact me!
Thanks,
Mindy

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• By windtalker
• Posted February 26, 2008 at 10:03 pm
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ok,pdecrease,i think i understand what this thing does,and is kinda what i thought..not TOO far from the recliner they brought to my grandmother-a power bark-o-lounger that helped her get up out of a sitting position,and also helped her to recline,as it was difficult for her to push a regular recliner back ,let alone trying to get out of one can be a challange-even for a non disabled person..

so ,this lift would put him in a "standing" position? and once there,he could then move it around,making him mobile?..sounds like a great idea..i can also see where this would make the heart work harder,and make breathing more difficult..is there any support to keep his weight off of his back? like crutch supports under his arms?to let him pull up if he needed to..

also,i can see where if he spends most of his time horizontal,or laying down,,does he spend any time in a wheelchair,and does that strain him or make him lightheaded?
sorry if these questions are --well,overwhelming..just my mind asking analytical questions..this sounds like a great machine,and i'm shure someone out there could put this tecknology to work..i do like the benevolent spirit of trying to find someone who could use something like this ,who might not be able to afford it.. the gap i find is where the vast majority of people who are making those kind of decesions-as to buy their medecine's,or buy food,or pay the light bill-a computer and a internet connection would be way down the list..while,not a year ago,i speent the summer living in my car-not by choice,but due to circumstance,a decent internet connection is a esential for me,as i'm trying to give a voice to not just myself,but to those whose story i know,and are not heard from by our leaders at both the state and federal level..
--again,apologies..i get wound up,but-i find this is better than yelling incoherently and pounding my fists..that only gives me a headache,and i have enough trouble with my hands and arms..all you peope out there who might be able to relate...thanks for understanding..

i think this kind of "passion" is the "curse" part of the creative gift..where you can skate dangerously close to the insane presipice..i'll go lay down now..;-)

..i do kinda live near some amish..i don't know any,as they are a sort of closed society,but i do know of a man who does buisness with some,..if you need ANYTHING made from wood,there are none better..as their furniture is in high demand..this summer,if i get a chance,i will see if anyone makes that bed,and get back to you,,or,i do know a metalsmith,and was thinkingof using a hospital bed,so you could raise the head,and legs-then make it swing in a rocking motion..sound good??..
..if this idea takes off,maybe the posting date will serve as the origins of the idea!,and if someone makes their millions,all i'm asking for is my fair share..after all,i just heard where the guy who made the "big mouth billy bass",that stupid singing fish,sold MILLIONS ..with a idea that helps people,maybe i could...get my fair share of the pie..
windtalkerr

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• By tfox
• Posted February 28, 2008 at 1:09 pm
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I hope you got my e-mail on the pump I have. If I don't get a reply, I never know, especially people on yahoo. Let me know at tfox@bendnet.com

P.S. Did you get my bio, and if so, what did you think?

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• By Lorenza1
• Posted February 28, 2008 at 7:16 pm
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Silver Cross
http://www.silvercross.com/
recycled and new stair lifts, ceiling lifts, scooters

FREE (Foundation for Rehabilitation Equipment & Endowment)
P.O. Box 8873
Roanoke, VA 24014
www.free-foundation.org
Serves residents of Western and Southside Virginia areas. Provides rehabilitative equipment to those who cannot get equipment otherwise.

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