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Dear Tony O

Posted by Laurie R on 8/18/01 at 00:05 (057065)

Dear Tony , Frist of all welcome to the board... I am not a doctor ,just a person in severe pain like your self. My heart really goes out to you . I believe everything you have said how the pain has changed your life. And how you can not work and make money the way you used to . I lost my job also due to this . I have been a bartender my whole adult life. I was the one in my family making the money , now I try to survive on Workman's comp . Don't get me wrong I am greatful for that ,but it is not much . I have two young daughters I am rasing too. I get very depressed when I have to tell them I can not do things I used to be able to do with them . Or telling them they can not have something due to not having any money .. It is not just pain for me it is everything that goes with it ... As i am sure you know well.

I am going on over two years with this . I started out with just PF and it was not treated right ,now I have nerve damage ,tenosynivits in one of my tendons and PF and now they think I have RSD .... I wait alot for doctor's visit and treatment ,it seems like all I do is wait .

I can offer you my friendship and my ear ,I wish I had more to give you . My heart is very sad for you. I understand your frustration ...

I can not believe any of your doctors won't give you pain meds. That what they are for ,people in pain. Oh how this makes me mad. Their are some wonderful long acting drugs available ...

I will be starting pain management soon ,well in a few months I have to wait , they said they are not taking new patients till Nov. I hope they give me something . I have been taking Vicodin ES ,it does not take the pain away but it does take the edge off.

As for how you look ,that should have nothing to do with it . As we know people love to judge us . I have learned a long time ago not to judge anyone for how they look , to me it has always been what is inside that matters. I have tattoos and believe me I get the looks . My hubby has a lot more then I do and he also gets the looks. But that does not make us bad people . So don't let anyone put you down for how you look......

Tony the bottom line is support is a wonderful thing. I have found that here. We are all here for you ... No it won't take your pain away ,but maybe you can get some peace from us . WE DO CARE AND UNDERSTAND YOUR PAIN ...

My very best to you Tony ..... Laurie R

Re: Dear Tony O

BrianG on 8/18/01 at 12:22 (057095)

Hi Tony,

I'm one of the sort of regulars here who take daily pain meds. I can tell you it was not easy getting my doctor to fianally prescrbe them. It took about 3 years, and a lot of educating. I was actually educating him all along. He told me he only had 1/2 day of chronic pain training in med school, and I'd be willing to believe even that was quite bogus. Most doctors, who are not pain management specialists, are terrified to prescribe pain meds, thanks to the DEA and other other govt. watchdogs.

It can be done Tony, but you'r going to have to play by their rules if you want to win. I'm fortunate that my job (security) demands that I have short hair. How much would you think having long hair has effected your search for quality pain control? I'd believe it counts ALOT !!! If it comes down to your hair, and your clothes, would you be willing to play the game, make some changes, to get the help you so desperatly need? If you say no, then I don't think you've reached rock bottom yet. I'm not saying it's right, believe me. It's just life.

If I was in your shoes, I'd personally make a few changes, especially to your appearance. You see, I've been where you are now, and I would have done anything to get the help I needed. There are doctors out there that will help you, believe me. I might even be able to hep you, but changes are going to have to happen on your end first.

Have you tried Methadone yet? It is by far the best narcotic for nerve type pain. It's not just for addicts anymore. It is helping many, many people each and every day. It's taken in pill form, every 6 hours.

I'm not here to bust your chops, please don't think I am. I can sense you are extremely frustrated over this whole nightmare, and I'd like to help if possible. Good luck, I'd like to hear back from you.

BCG

Re: Dear Tony O

Julie on 8/18/01 at 12:47 (057099)

Hi Tony

I have to second what Brian says. Of course we all have the absolute right to wear the clothes we like, and have our hair the length we like, but there is no doubt that our appearance affects people's responses to us. If you are trying to get results, a little 'playing the game' is definitely in order.

Brian's knowledge of pain medication has been immensely helpful to a number of people here. He has used his own difficult experience to help others, so I hope you will feel you can listen to his advice and think about taking the sort of steps he suggests. I am sure he is right.

I would also like to say - tentatively, and shoot me down if you like - that your posts yesterday and today have sounded very much as if you are depressed. And no wonder. There are few things more depressing that unremitting pain. You probably ought to be asking for some kind of help with that aspect, to help you get out of this despairing spiral you're in. Even a little relief will put you in a better position and a more positive frame of mind so that you can start actively looking for a better doctor and the help that you need and must have. And that we all hope you get.

Keep posting here. There is a lot of support here.

All good wishes, Julie

Re: to brian

tony o on 8/18/01 at 12:53 (057100)

at this point i will do anything. id cut my #$%^%$ off if i had to to get some relief. i just need to get back to work and make a living and try to save what i have left. it would nice to try some of the meds you are saying......just can't get any docs here to give em to ya. thanx .... i appreciate the thought though.. tnanks. T

Re: They are out there.

BrianG on 8/18/01 at 18:57 (057119)

Hi Tony,

I don't think your understnding what I'm getting at. To say you'd cut you *^# off, and to really do it, are 2 different things. I'll tell you this, there are docors in every city that are treating cronic pain patients wth long term meds. Now it's not always easy to find them, but with some net working, and presenting your case correctly, you will get what you need.

I doubt very many doctors, including Pain Management docs, will prescribe narcotics to someone who walks in off the street, no visable pain, and possibly looks like person who mght abuse drugs. I have no idea what you look like, except you have long hair and like heavy metal. Think about it, am I not describing your typical drug abuser! I'll tell you, I haven't worked in security my whole life, and I certainly haven't been an angel. There was a point in my life when I could not even get food stamps because of my appearance! I'm talking the mid 70's here, I don't think I need to expalin any more. So yes, I do know what discrimination is.

If your serious about this type of pain treatment, you are going to have to prepare some items before seeing the doctor who will eventually help you. I'd start with a pain chart. Every day, 3-4 times a day, you start a chart and you rate your pain on a 1-10 scale. make brief notations of what is happening with your body, pain, and your mind (depression goes right along with pain). It's not unusual to continue these charts for months.

Next you may want to write out a letter to you new doc. Tell him how the pain is effecting you, are they thngs you can no longer do? Write them down. Have you lost friends and family? Write it down. Pain keep you up most of the night, write it down. Spend 10 hours a day in the recliner, write it down. I hope you can see what I'm getting at. We both have pain that is caused by something not visable to then human eye. The doctors need information for their files, they need protection from the peope who would take away their script pads. How is a doctor going to make a living if the DEA doesn't allow him to prescribe? WE have some real problems going on right now with the govt's war on drugs. Their focus has gone from street drugs, to pain meds like Oxy Contin.

It's a bad deal Tony, and the drug abusers are making it harder and harder for legitimate pain people like us to get our meds. On the other hand, there has been some great advancements in the last decade concerning pain control. It wasn't too long ago, the only people getting high doses of narcotics were the cancer ridden, dying, hospital patients. Now, the word is out that people in chronic pain need to have their pain treated, just as any other ailment is treated. This type of treatment (for pain) is fairly new and it has a long way to go. But it is happening today for the people fortunate enough to get connected with a compassionate doctor.

Take a little time and read through this site, http://www.pain.com It'll give you a start into what you are seekng. There are other sites available, that go into even more detail. If you decide that you want to persue this form of treatment, now is the time to get started. It's funny, but you would have already had better treatment if you had gotten a visable ailment, like skin cancer.

Don't despair buddy, help is out there. See if one of your doctors will start you on an anti depressent, like Celexa. You should start to feel a little better, and it'll be a little easier to deal with your currant ordeal.

Lastly, is there anyone in your life, friend or family, that can help by advocating for you? Sometimes it's necessary for that extra help, like phone calls, writing letters and notes, wading through web sites, etc. I read where you are single, but don't let that stop you from looking and asking. You'd probably be surprised at how many people would agree to help you.

Be talking to ya
BCG

Re: They are out there.

Julie on 8/19/01 at 02:33 (057134)

Tony, I seem tobe playing Greek chorus here, but I'm coming in again to say again that I hope you will listen to Brian. He has been through the long, frustrating, tricky process of convincing doctors that he needs, and is entitled to have, strong medication to control his pain sufficiently to enable him to work. He has succeeded. He is working. He is managinghis pain and he has a life. That sounds like EXACTLY what you seek, what you want. You are fortunate that there is someone here who is able to share such highly relevant experience with you. And you can use Brian's experience to benefit you, or not, as you choose.

You do have the choice.

This morning I've read all your posts again, on this thread and the first one. Something leapt out at me that I did not notice when I first read it. You say not only that you have very long hair, but that you are 'extremely dangerous looking'.

If that is true, do you really think that any doctor , when he sees you coming through the door, is going to engage himself with your pain? Or care about it? He is much more likely to want you out of there as quickly as possible, having concluded that you're a drugs abuser or worse. You may be a kind, gentle, decent person behind the mask you offer the world, but you can't expect people to assume it. People unfortunately have good reason to be afraid of other people these days, especially if they look dangerous. It's not entirely fair to ascribe their negative response entirely to 'prejudice' and 'discrimination'.

If you really want help you are more likely to get it if you are prepared to take some practical steps. You say that to change your appearance would be 'going against your principles', but what can there possibly be in your principles to make you want to approach people as a dangerous looking person (even without the 'extremely' bit, which was probably an exaggeration). I will ask you: do you think it's rational to expect people from whom you want help to take you seriously under those conditions?

Be rational. Make whatever changes are needed so that you can approach people and ask for the help you need with a real possibility of getting it. Have short hair, a clean shave. Wear ordinary clean clothes that don't make a statement. Speak to doctors and others about the facts of your condition, as calmly as you can. Approach them with the respect you want for yourself.

Even when you do make the changes, it will take time and effort on your part to get the help you need. But if you really want help, you'll do it.

You've shared your pain with us, and you've been listened to, and you've been sympathized with by everyone who has responded - in different ways, because we're all different; but always sincerely. And you can be sure that for everyone who has responded with a post, there are several others who have felt your pain. That's one of the things this board is for. But it's not the only thing. Here you will get not only sympathy, but information. People will share experience and knowledge with you, which, if you use it, will help you to help yourself. That too is support. How you use it is up to you.

Re: Dear Tony O

BrianG on 8/18/01 at 12:22 (057095)

Hi Tony,

I'm one of the sort of regulars here who take daily pain meds. I can tell you it was not easy getting my doctor to fianally prescrbe them. It took about 3 years, and a lot of educating. I was actually educating him all along. He told me he only had 1/2 day of chronic pain training in med school, and I'd be willing to believe even that was quite bogus. Most doctors, who are not pain management specialists, are terrified to prescribe pain meds, thanks to the DEA and other other govt. watchdogs.

It can be done Tony, but you'r going to have to play by their rules if you want to win. I'm fortunate that my job (security) demands that I have short hair. How much would you think having long hair has effected your search for quality pain control? I'd believe it counts ALOT !!! If it comes down to your hair, and your clothes, would you be willing to play the game, make some changes, to get the help you so desperatly need? If you say no, then I don't think you've reached rock bottom yet. I'm not saying it's right, believe me. It's just life.

If I was in your shoes, I'd personally make a few changes, especially to your appearance. You see, I've been where you are now, and I would have done anything to get the help I needed. There are doctors out there that will help you, believe me. I might even be able to hep you, but changes are going to have to happen on your end first.

Have you tried Methadone yet? It is by far the best narcotic for nerve type pain. It's not just for addicts anymore. It is helping many, many people each and every day. It's taken in pill form, every 6 hours.

I'm not here to bust your chops, please don't think I am. I can sense you are extremely frustrated over this whole nightmare, and I'd like to help if possible. Good luck, I'd like to hear back from you.

BCG

Re: Dear Tony O

Julie on 8/18/01 at 12:47 (057099)

Hi Tony

I have to second what Brian says. Of course we all have the absolute right to wear the clothes we like, and have our hair the length we like, but there is no doubt that our appearance affects people's responses to us. If you are trying to get results, a little 'playing the game' is definitely in order.

Brian's knowledge of pain medication has been immensely helpful to a number of people here. He has used his own difficult experience to help others, so I hope you will feel you can listen to his advice and think about taking the sort of steps he suggests. I am sure he is right.

I would also like to say - tentatively, and shoot me down if you like - that your posts yesterday and today have sounded very much as if you are depressed. And no wonder. There are few things more depressing that unremitting pain. You probably ought to be asking for some kind of help with that aspect, to help you get out of this despairing spiral you're in. Even a little relief will put you in a better position and a more positive frame of mind so that you can start actively looking for a better doctor and the help that you need and must have. And that we all hope you get.

Keep posting here. There is a lot of support here.

All good wishes, Julie

Re: to brian

tony o on 8/18/01 at 12:53 (057100)

at this point i will do anything. id cut my #$%^%$ off if i had to to get some relief. i just need to get back to work and make a living and try to save what i have left. it would nice to try some of the meds you are saying......just can't get any docs here to give em to ya. thanx .... i appreciate the thought though.. tnanks. T

Re: They are out there.

BrianG on 8/18/01 at 18:57 (057119)

Hi Tony,

I don't think your understnding what I'm getting at. To say you'd cut you *^# off, and to really do it, are 2 different things. I'll tell you this, there are docors in every city that are treating cronic pain patients wth long term meds. Now it's not always easy to find them, but with some net working, and presenting your case correctly, you will get what you need.

I doubt very many doctors, including Pain Management docs, will prescribe narcotics to someone who walks in off the street, no visable pain, and possibly looks like person who mght abuse drugs. I have no idea what you look like, except you have long hair and like heavy metal. Think about it, am I not describing your typical drug abuser! I'll tell you, I haven't worked in security my whole life, and I certainly haven't been an angel. There was a point in my life when I could not even get food stamps because of my appearance! I'm talking the mid 70's here, I don't think I need to expalin any more. So yes, I do know what discrimination is.

If your serious about this type of pain treatment, you are going to have to prepare some items before seeing the doctor who will eventually help you. I'd start with a pain chart. Every day, 3-4 times a day, you start a chart and you rate your pain on a 1-10 scale. make brief notations of what is happening with your body, pain, and your mind (depression goes right along with pain). It's not unusual to continue these charts for months.

Next you may want to write out a letter to you new doc. Tell him how the pain is effecting you, are they thngs you can no longer do? Write them down. Have you lost friends and family? Write it down. Pain keep you up most of the night, write it down. Spend 10 hours a day in the recliner, write it down. I hope you can see what I'm getting at. We both have pain that is caused by something not visable to then human eye. The doctors need information for their files, they need protection from the peope who would take away their script pads. How is a doctor going to make a living if the DEA doesn't allow him to prescribe? WE have some real problems going on right now with the govt's war on drugs. Their focus has gone from street drugs, to pain meds like Oxy Contin.

It's a bad deal Tony, and the drug abusers are making it harder and harder for legitimate pain people like us to get our meds. On the other hand, there has been some great advancements in the last decade concerning pain control. It wasn't too long ago, the only people getting high doses of narcotics were the cancer ridden, dying, hospital patients. Now, the word is out that people in chronic pain need to have their pain treated, just as any other ailment is treated. This type of treatment (for pain) is fairly new and it has a long way to go. But it is happening today for the people fortunate enough to get connected with a compassionate doctor.

Take a little time and read through this site, http://www.pain.com It'll give you a start into what you are seekng. There are other sites available, that go into even more detail. If you decide that you want to persue this form of treatment, now is the time to get started. It's funny, but you would have already had better treatment if you had gotten a visable ailment, like skin cancer.

Don't despair buddy, help is out there. See if one of your doctors will start you on an anti depressent, like Celexa. You should start to feel a little better, and it'll be a little easier to deal with your currant ordeal.

Lastly, is there anyone in your life, friend or family, that can help by advocating for you? Sometimes it's necessary for that extra help, like phone calls, writing letters and notes, wading through web sites, etc. I read where you are single, but don't let that stop you from looking and asking. You'd probably be surprised at how many people would agree to help you.

Be talking to ya
BCG

Re: They are out there.

Julie on 8/19/01 at 02:33 (057134)

Tony, I seem tobe playing Greek chorus here, but I'm coming in again to say again that I hope you will listen to Brian. He has been through the long, frustrating, tricky process of convincing doctors that he needs, and is entitled to have, strong medication to control his pain sufficiently to enable him to work. He has succeeded. He is working. He is managinghis pain and he has a life. That sounds like EXACTLY what you seek, what you want. You are fortunate that there is someone here who is able to share such highly relevant experience with you. And you can use Brian's experience to benefit you, or not, as you choose.

You do have the choice.

This morning I've read all your posts again, on this thread and the first one. Something leapt out at me that I did not notice when I first read it. You say not only that you have very long hair, but that you are 'extremely dangerous looking'.

If that is true, do you really think that any doctor , when he sees you coming through the door, is going to engage himself with your pain? Or care about it? He is much more likely to want you out of there as quickly as possible, having concluded that you're a drugs abuser or worse. You may be a kind, gentle, decent person behind the mask you offer the world, but you can't expect people to assume it. People unfortunately have good reason to be afraid of other people these days, especially if they look dangerous. It's not entirely fair to ascribe their negative response entirely to 'prejudice' and 'discrimination'.

If you really want help you are more likely to get it if you are prepared to take some practical steps. You say that to change your appearance would be 'going against your principles', but what can there possibly be in your principles to make you want to approach people as a dangerous looking person (even without the 'extremely' bit, which was probably an exaggeration). I will ask you: do you think it's rational to expect people from whom you want help to take you seriously under those conditions?

Be rational. Make whatever changes are needed so that you can approach people and ask for the help you need with a real possibility of getting it. Have short hair, a clean shave. Wear ordinary clean clothes that don't make a statement. Speak to doctors and others about the facts of your condition, as calmly as you can. Approach them with the respect you want for yourself.

Even when you do make the changes, it will take time and effort on your part to get the help you need. But if you really want help, you'll do it.

You've shared your pain with us, and you've been listened to, and you've been sympathized with by everyone who has responded - in different ways, because we're all different; but always sincerely. And you can be sure that for everyone who has responded with a post, there are several others who have felt your pain. That's one of the things this board is for. But it's not the only thing. Here you will get not only sympathy, but information. People will share experience and knowledge with you, which, if you use it, will help you to help yourself. That too is support. How you use it is up to you.