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Old 01-28-2007, 03:33 PM   #181
rkzenrage
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Just trying to rest. Not easy though.
You are right about the bed!
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Old 01-28-2007, 04:27 PM   #182
rkzenrage
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BTW, I cannot tell you all how much you, and this site, helps me with my pain.
It takes me "outside" of myself.
It helps a lot with the loneliness too.
(Sorry for the double-post, but this was entirely different than the last post)

Thank you all, and yes, I mean ALL of you.
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Old 01-29-2007, 02:00 AM   #183
WabUfvot5
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Those beds can make anybody feel worse after a few days :S Would they allow you to bring one of those eggshell layers in? I had to do that at one place.
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Old 01-29-2007, 12:52 PM   #184
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I will next time, thanks for the advice.
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Old 03-26-2007, 05:56 PM   #185
rkzenrage
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The bed helps.
My Dr. is referring me to Shands, but I have already been told that they are really only going to be looking at pain management. They know they can't help me, but we will see. I'm sure tests will be run, perhaps someone will find something helpful.
I interviewed another pain Dr recently. He actually turned me down as a patient, stating that he could not help me and that I needed more than he was used to doing for his patients. He suggested Shands also.
Hard to hear from a pain specialist.
I've been wanting to make some YouTube videos and start back to working in wood. I can't until someone helps me set my shop back up and my video equipment in my office.
The people in my life are very busy and sometimes can't do these things when I can or I am too ill to be there when they are available (this happened once). This is very frustrating and becoming more so as I become more and more dependent on others as I can do less and less for myself.
I had to get rid of all my plants and gave my mother all of my sushi making materials last night.
There are very dark thoughts... and I want a drink.
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Old 03-26-2007, 09:01 PM   #186
monster
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Quote:
Originally Posted by rkzenrage View Post
There are very dark thoughts... and I want a drink.
Why do you want a drink? Will it make you feel better?

Alcohol is a pain-killer. If it will make you feel better, is there no way you can have a drink or limited amount of drinks without permanent psychological or physical damage? When things get so bad, why can't you have a couple? will they react with medication? Will you lose psychological control? What?

-I'm not judging, please believe me. I remember that you have posted about problems with alcohol, but I just wonder is it necessary to be absolutely teetotal? I have problems with painkillers -many react with my asthma meds and those left often don't work. baby pain compared with yours, but when I don't have to drive, operate machiney, watch the sprogs, a few beers work a treat -the pain is numbed a bit, and I don't care so much about what remains.

I used to work with a neuropsychologist who looked at the permanent effects of prescription painkillers on the brain. They sure work faster than alcohol!
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Old 03-26-2007, 10:18 PM   #187
aftselakhis
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Join Date: Mar 2007
Location: Canada, and hell if I'll tell you what city, 'tis horrible here (s'right, Winnipeg)
Posts: 2
The feeling is mutual. For a while, being the crazy cat (rodent, this building won't allow cats) lady worked for me. Then I got sick of it, because it's not me. I'm trying the naturopathic approach, seeing as nothing else has worked, and attempting the "Anti-Candida" diet. It's not easy to prepare the foods I'm allowed, or even remember. Plus there are supplements; it's almost not worth it. It's been four years, and my free-spirit, do-it-all personality is not faring well. Everything hurts, even my Sealy Posturepedic. I've tried alcohol, and even that doesn't help after a while, and leads to other problems to compound those you've already got. Not to mention I've developed an allergy. The best option I can think of is to ask my doctor about a morphine patch, perhaps get a new bed. I've become somewhat of a home-remedy expert, if I knew your symptoms, I may be able to offer some ideas. The things that work for most people haven't for me, but that doesn't mean they won't for you. Let's hope. *crosses fingers*

Best wishes.
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Old 03-26-2007, 10:24 PM   #188
rkzenrage
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I can't take too much morphine, I'm one of those who cannot sleep when I take it. It makes me hyper and very aggressive.

Quote:
~Standard- Wrong with Rob?

I have a very rare (there is no name for it, I may be the only one) genetic degenerative bone/hormone/connective tissue/nerve disease that I was born with. Different aspects are being diagnosed constantly.
The best way to think of it, as the individual symptoms were diagnosed through my life from about 13 on; it is like having osteoporosis, arthritis, facets (spine collapsing on largest nerves), compressed/fractured/slipped/herniated discs, immune deficiency, & tendonitis all at the same time.
I have a birth defect of my lower spine, spinal cord and epidural space that encourages a lot of these problems.
My spine is 1/2 the size it should be on the bottom half and I have almost no epidural space.
Due to the spinal issues, arthritis and connective tissue problems I am very sensitive to weather/barometer changes.
The illness has recently been affecting my liver & kidneys, there are varying theories as to why, I don't really discuss that very much.
There is no cure and they cannot slow it down, though they have been trying.
The surgeries that I have had are many, removing parts of my spine, work on my sciatic nerve & have implanted a pacemaker into my back with leads that go into my spine to send electric shocks to confuses a percentage of the pain signal to my brain (only from my legs, but better than none at all).
I do, however, have more blessings than curses in my life.
This pain, though constant and somewhat extreme, is nothing compared to what I see people do to themselves and to each other.
I have a loving family, shelter and food; I did not always have any or all of these things at times in my life.
I am rich and loved beyond my wildest dreams, we all have our stuff and I would not trade my with another's; waste no pity on me.
Namaste'
Robert
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Old 03-26-2007, 10:26 PM   #189
rkzenrage
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Quote:
Originally Posted by monster View Post
Why do you want a drink? Will it make you feel better?

Alcohol is a pain-killer. If it will make you feel better, is there no way you can have a drink or limited amount of drinks without permanent psychological or physical damage? When things get so bad, why can't you have a couple? will they react with medication? Will you lose psychological control? What?

-I'm not judging, please believe me. I remember that you have posted about problems with alcohol, but I just wonder is it necessary to be absolutely teetotal? I have problems with painkillers -many react with my asthma meds and those left often don't work. baby pain compared with yours, but when I don't have to drive, operate machiney, watch the sprogs, a few beers work a treat -the pain is numbed a bit, and I don't care so much about what remains.

I used to work with a neuropsychologist who looked at the permanent effects of prescription painkillers on the brain. They sure work faster than alcohol!
I would drink to help with pain, but it is very temporary, I would hurt far more the next day.
It is bad with my meds and my liver does not function properly.
It would hasten my demise and make my current depression far worse.
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Old 03-27-2007, 11:36 AM   #190
nowhereman
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Have you tried an alternating pressure air mattress? (For those who don't know, this has a pump which fills and empties different cells in the mattress constantly.) We got one for my mother when she was ill, and it seemed to help quite a bit, as she was pretty much bedridden for a while.
Just a thought, best wishes goin' your way.
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Old 03-27-2007, 03:03 PM   #191
TheMercenary
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Quote:
Originally Posted by rkzenrage View Post
I can't take too much morphine, I'm one of those who cannot sleep when I take it. It makes me hyper and very aggressive.
Have you tired a Fentanyl patch? Many doctors are reluctant to perscribe them mostly because of bad press. You need to find an Anesthesiologist Pain Specialist if you have not tried one already. A good one will do wonders for you ADL and pain management will be the key to a happier or at least a more bearable future.
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Old 03-27-2007, 03:06 PM   #192
TheMercenary
“Hypocrisy: prejudice with a halo”
 
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Location: Savannah, Georgia
Posts: 21,393
"I have a very rare (there is no name for it, I may be the only one) genetic degenerative bone/hormone/connective tissue/nerve disease that I was born with. Different aspects are being diagnosed constantly.
The best way to think of it, as the individual symptoms were diagnosed through my life from about 13 on; it is like having osteoporosis, arthritis, facets (spine collapsing on largest nerves), compressed/fractured/slipped/herniated discs, immune deficiency, & tendonitis all at the same time.
I have a birth defect of my lower spine, spinal cord and epidural space that encourages a lot of these problems.
My spine is 1/2 the size it should be on the bottom half and I have almost no epidural space.
Due to the spinal issues, arthritis and connective tissue problems I am very sensitive to weather/barometer changes.
The illness has recently been affecting my liver & kidneys, there are varying theories as to why, I don't really discuss that very much.
There is no cure and they cannot slow it down, though they have been trying.
The surgeries that I have had are many, removing parts of my spine, work on my sciatic nerve & have implanted a pacemaker into my back with leads that go into my spine to send electric shocks to confuses a percentage of the pain signal to my brain (only from my legs, but better than none at all).
I do, however, have more blessings than curses in my life.
This pain, though constant and somewhat extreme, is nothing compared to what I see people do to themselves and to each other.
I have a loving family, shelter and food; I did not always have any or all of these things at times in my life.
I am rich and loved beyond my wildest dreams, we all have our stuff and I would not trade my with another's; waste no pity on me.
Namaste'
Robert "

I understand better. Namaste to you.
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Old 03-27-2007, 09:11 PM   #193
rkzenrage
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Quote:
Originally Posted by nowhereman View Post
Have you tried an alternating pressure air mattress? (For those who don't know, this has a pump which fills and empties different cells in the mattress constantly.) We got one for my mother when she was ill, and it seemed to help quite a bit, as she was pretty much bedridden for a while.
Just a thought, best wishes goin' your way.
I have the foam mattress, it works very well.
Quote:
Originally Posted by TheMercenary View Post
Have you tired a Fentanyl patch? Many doctors are reluctant to perscribe them mostly because of bad press. You need to find an Anesthesiologist Pain Specialist if you have not tried one already. A good one will do wonders for you ADL and pain management will be the key to a happier or at least a more bearable future.
I can't sleep with morphine. I am in the minority that it makes very hyper and aggressive. I take some opiate meds, but only early in the day.
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Old 03-27-2007, 09:27 PM   #194
TheMercenary
“Hypocrisy: prejudice with a halo”
 
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Location: Savannah, Georgia
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Quote:
Originally Posted by rkzenrage View Post
I can't sleep with morphine. I am in the minority that it makes very hyper and aggressive. I take some opiate meds, but only early in the day.
Fentanyl is a completely different med from Morphine. Almost no one is allergic to it. It has equipotent equivalent of about 100 times morphine. It is wholely synthetic. You really need to check this out.


Check out these links.

http://www.webmd.com/search/search_r...Fentanyl+Patch
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Old 03-27-2007, 09:40 PM   #195
WabUfvot5
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I don't remember how much fentanyl I was on, but it didn't help much beyond minor aches and pains. The thought of slapping multiple patches on did occurre to me until the nurse said it can make you very ill. I never even finished them all; the adhesive nuisance was worse than the minimal pain relief.
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