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Chronic Pain Whatever the cause, support for managing long term or intractable pain.

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  #11  
Old 02-18-2009, 12:21 PM
steph2323 steph2323 is offline
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Originally Posted by feederband View Post
I started Fentanyl about a 3 month ago. 25mcg every 3 days...I was taking 4 percs and a morph at night... And still just labored in pain in bed for most of the day for about 6 months after my second disc surgery that failed... Not to mention the sick feeling I had using those drugs...Your right about it being a Miracle and mine also starts to give out on the 3rd day but no where near the pain I use to be in so I just deal with it..

My Cardiologist doesn't like the Idea with all my heart problems..But I told him it was a quality of life issue and I couldn't be in the pain I was for much longer..

On the plus side for now I have lost 25lbs on these things..I need to actually get rid of 20 more...But it also kind of worries me...I never get hungry...As far as Hot baths and showers I have no problems ...Hotter the better..

But I have no side effects except losing weight and 95% pain loss..Its like I'm taking nothing.

Thanks for sharing your thoughts on this subject and glad it is working well for you. I do understand about the quality of life issue completely. You have to be able to be able to function a little bit with decreased pain. It's just too much to take after a while.

I met with my doc yesterday and she switched the script so I can change every 48 hours so I'm happy and started that today. She said I can take hot showers but still no beach. I'm ok with that if this continues to work so well. The only side effects are the fatigue, which I take adderal for and the nausea, that I have with all pain meds, so I take Tygan for that. Haven't noticed a decrease in appetite because of the Fentanyl, but overall have a decreased appetite from the day I started with all of these meds. Probably because I have spent so much time on the couch and not burning calories, but my weight has not changed
Good luck to you
Stephanie
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Stephanie

Chronic Pain in back, nerve pain arms and legs. 5 herniations, DDD and other back issues. Current medsuragesic,Cymbalta,Zanaflex,Klonopin,Tramadol ,Lidoderm,Adderall
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  #12  
Old 02-20-2009, 06:57 PM
DiMarie DiMarie is offline
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Originally Posted by steph2323 View Post
Thanks so much for the very detailed answer Melissa! When I told my doctor that I was going to Florida she said no beach so I know her position on that, but will contact the drug company to ask them specifics related to temperatures of other activities. It makes me feel better to know that you have been able to do some normal things while on it. I really am hoping that this is the answer for me, but was a little bummed that I would have to be so careful while I was just getting some relief finally.
I will be asking her about changing every 48 hours as I do notice a drop off on the third day. I think that she will agree, but even if she doesn't, I will be happy to have a couple of good days a week.
I am hoping that they come out with a long acting fentanyl pill in the future, which would be the best of both worlds. Am I getting greedy now lol?
Thanks again for your most helpful info and I am glad that it is working so well for you too.
Stephanie
I never realised the problems with Duregesic until it was too late. I trusted the manufacturer, I trusted the pharmacy and doctors. But, in a heated room with a defective patch a family member received a fatal dose of fetanyl.
When I came home from work it was too late.

I had the coroners report later that stated cause and related the heated room and only on the body were the perscribed doses. The weakness of the design allows an uncontrolled amount to go into the body. All the side effects are they not just relating the amount going in not properly controlled due to outside variables? Then the risk of receiving a faulty leaking patch? The level of fentanyl in the body was consistant with a leak.

I did not believe it, for almost two years until I researched and that educated me about the machine that produces the patches and it is producing 8000 in a batch that fails. There is nowhere on the patch that it says Death is a risk, it says that respiration problems.

The alternative available matrix design prevents this potential for a fatal overdose. There has been two recent multimillion dollar awards against the Manufactures last year but they continue to use the gel resivour. The edges can pull apart and allow too much concentration to enter the body.

It was a tough to accept, I trusted this medication,.
Do a search on the lawsuits and attornies. Why is the form of this discharge allowed to go on?
Why do they not inform the pharmacies of the problem and the hundreds of cases that are filed?

All these families that lost loved ones.....There is no explaining the feeling f choosing a casket for your child or pick out their burial outift.
I trusted, Lord help me I trusted......
If I have to go to Congress FDA or what ever it takes I want this type of discharge removed from the market when they know its faults and still use this design instead of the Matrix.
Nothing will give me back my child, but if another family has to go through this let the manufacture be accountable.

Have a talk with your doctor, pharmacy and read about the lawsuits and losses. It is a shame, they will likely say something like the risk is so small....but it happens and it happened for years and the manufacture still chooses not to fix the problem. How many have to die?
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Left side C4/5/6/7 herniations, Carpal tunnel
Brachial plexapathy/Thoracic outlet synd. Bi-laterial
Lumbar L4/5 herniations, Sacro-illiac injury-tilt
Cervogenic Migraines
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  #13  
Old 02-20-2009, 08:01 PM
steph2323 steph2323 is offline
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Quote:
Originally Posted by DiMarie View Post
I never realised the problems with Duregesic until it was too late. I trusted the manufacturer, I trusted the pharmacy and doctors. But, in a heated room with a defective patch a family member received a fatal dose of fetanyl.
When I came home from work it was too late.

I had the coroners report later that stated cause and related the heated room and only on the body were the perscribed doses. The weakness of the design allows an uncontrolled amount to go into the body. All the side effects are they not just relating the amount going in not properly controlled due to outside variables? Then the risk of receiving a faulty leaking patch? The level of fentanyl in the body was consistant with a leak.

I did not believe it, for almost two years until I researched and that educated me about the machine that produces the patches and it is producing 8000 in a batch that fails. There is nowhere on the patch that it says Death is a risk, it says that respiration problems.

The alternative available matrix design prevents this potential for a fatal overdose. There has been two recent multimillion dollar awards against the Manufactures last year but they continue to use the gel resivour. The edges can pull apart and allow too much concentration to enter the body.

It was a tough to accept, I trusted this medication,.
Do a search on the lawsuits and attornies. Why is the form of this discharge allowed to go on?
Why do they not inform the pharmacies of the problem and the hundreds of cases that are filed?

All these families that lost loved ones.....There is no explaining the feeling f choosing a casket for your child or pick out their burial outift.
I trusted, Lord help me I trusted......
If I have to go to Congress FDA or what ever it takes I want this type of discharge removed from the market when they know its faults and still use this design instead of the Matrix.
Nothing will give me back my child, but if another family has to go through this let the manufacture be accountable.

Have a talk with your doctor, pharmacy and read about the lawsuits and losses. It is a shame, they will likely say something like the risk is so small....but it happens and it happened for years and the manufacture still chooses not to fix the problem. How many have to die?
I am so sorry to hear about your child. No one should have to die while trying to get pain relief. I am being very careful and taking all of the precautions very seriously. Did your child have a defective patch or was it because of the heat? Or a combo of both? It's sad to say, but the only way that manufacturers will change the way that these are made to make them safer is by lawsuits so we don't have any more deaths.
Stephanie
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Stephanie

Chronic Pain in back, nerve pain arms and legs. 5 herniations, DDD and other back issues. Current medsuragesic,Cymbalta,Zanaflex,Klonopin,Tramadol ,Lidoderm,Adderall
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  #14  
Old 02-20-2009, 08:23 PM
DiMarie DiMarie is offline
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Stephanie
Thank you for your kind words.
Toxicology was found to be levels consistant with a leaking patch. The coroner in his report noted it was extremly warm in the room.
Something has to be done, if there is a leak it would never be known by the wearer.
__________________
Left side C4/5/6/7 herniations, Carpal tunnel
Brachial plexapathy/Thoracic outlet synd. Bi-laterial
Lumbar L4/5 herniations, Sacro-illiac injury-tilt
Cervogenic Migraines
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  #15  
Old 02-20-2009, 08:39 PM
steph2323 steph2323 is offline
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Quote:
Originally Posted by DiMarie View Post
Stephanie
Thank you for your kind words.
Toxicology was found to be levels consistant with a leaking patch. The coroner in his report noted it was extremly warm in the room.
Something has to be done, if there is a leak it would never be known by the wearer.
So you understand why I cancelled my trip to Florida then I am going to continue with it and see how it goes, but if there is not signifigant ongoing relief, I will ask to go off of it by summer. Thanks again for the info and keep up the good work of spreading the word.
Stephanie
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Stephanie

Chronic Pain in back, nerve pain arms and legs. 5 herniations, DDD and other back issues. Current medsuragesic,Cymbalta,Zanaflex,Klonopin,Tramadol ,Lidoderm,Adderall
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  #16  
Old 02-21-2009, 03:33 PM
DiMarie DiMarie is offline
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Stephanie,
My dd did take a trip to florida, but not the beach. Unfortunatly it was in Oct and 99* at Epcot and Universal. I kept her with a canapy on a scooter, spray bottle of water, gateraid in a cooler. The only problem I noted was behavioral, she was very anagonistic. As long as we gave her priority, she was OK. If I set restrictons.....Like it is to hot now, lets go to the hotel and take anap until laer, she would flip, which was so unusaual at that time.

She just wanted to keep going and going, that was odd to me. So she sulked big time. Also, she swam at night. The pool was open, and no sun out.

So depending what the trip is for, if the beach, maybe you can change the time of day you will be out in the heat, or the time of the year you are going. Shorter day light and lower heat temps.

Emotionally, everyone needs to get away, just smart choices. Also, if it is time to change your patch can you wait while at the beach? Or leaving the expired one on longer?
I am just thinking out loud....
Blessings,
di
__________________
Left side C4/5/6/7 herniations, Carpal tunnel
Brachial plexapathy/Thoracic outlet synd. Bi-laterial
Lumbar L4/5 herniations, Sacro-illiac injury-tilt
Cervogenic Migraines
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  #17  
Old 02-21-2009, 07:53 PM
steph2323 steph2323 is offline
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[QUOTE=DiMarie;321114]Stephanie,
My dd did take a trip to florida, but not the beach. Unfortunatly it was in Oct and 99* at Epcot and Universal. I kept her with a canapy on a scooter, spray bottle of water, gateraid in a cooler. The only problem I noted was behavioral, she was very anagonistic. As long as we gave her priority, she was OK. If I set restrictons.....Like it is to hot now, lets go to the hotel and take anap until laer, she would flip, which was so unusaual at that time.

She just wanted to keep going and going, that was odd to me. So she sulked big time. Also, she swam at night. The pool was open, and no sun out.

So depending what the trip is for, if the beach, maybe you can change the time of day you will be out in the heat, or the time of the year you are going. Shorter day light and lower heat temps.

Emotionally, everyone needs to get away, just smart choices. Also, if it is time to change your patch can you wait while at the beach? Or leaving the expired one on longer?
I am just thinking out loud....
Blessings,
di[/QUOT

Swimming at night sounds good to me! Yes, I know that we all need to get away and it's been 8 years for me so I am desperate. But more desperate for pain relief now. I go back and forth in my mind with this med and I just need to be careful, let it work and see how I do. If I remain too focused on all of the side effects,ect then I'm going to make myself sick that way. Thanks for your response and support.
Stephanie
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Stephanie

Chronic Pain in back, nerve pain arms and legs. 5 herniations, DDD and other back issues. Current medsuragesic,Cymbalta,Zanaflex,Klonopin,Tramadol ,Lidoderm,Adderall
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