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    #31
    I think that it's really messed up that I am not allowed to be in pain, because if I do I'm wrong, it's not that they didn't give me enough meds, it's that I hurt too much...

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      #32
      is there a possibility of switching pain management drs? I really feel for you, I struggled for a few years with lousy pain Drs and not being given anything that worked. Then after moving I had to wait 6 months to see a new pain Dr, and my new primary dr at that time was so terrified to prescribe pain meds she would only write 2 weeks of tramadol at a time! Each time telling me it was my last prescription.. Meanwhile she knew I was waiting to see the Dr SHE referred me to! So I'd have to call or show up begging and crying for the next 2 weeks. And tramadol isn't even a narcotic, and I was in unbearable pain with it!

      However... After all that I finally started seeing the Dr who I have now, who turned out to be wonderful. He's the first Dr that really listens to me and he's also familiar with my disorder. He better never retire...
      Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

      I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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        #33
        Lin - what is his age compared to yours? Is your pain doc health appearing, fit? If you are decades younger than him, have him introduce you to a younger partner before he looks like he is going to keel over so you will have a smooth transition.

        May I ask, does E-D syndrome have a lower life expectancy as does SCI?

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          #34
          Looking up his name, it says he's been practicing medicine for 41 years. I'm only 26. I see him at Indiana University Hospital, so whenever he retires I hope they'll have someone else just as good.

          As to your question about EDS, it depends. EDS is on a very wide spectrum between those who never even know they have it, and those who die young as a result. There are separate types though the symptoms overlap and they types don't run "true." EDS also causes a lot of secondary issues which can shorten lifespan. I have a condition called Dysautonomia. Some of it is similar to the AD you guys experience. Dysautonomia also has a wide range, but the prognosis for those who have it as a result of progressive diseases is not very good. I've been told point blank that its going to take a chunk off my expected lifespan.

          With EDS preventative measures are the key. I have a cardiothoracic surgeon that specializes in connective tissue disorders that I see yearly with an echocardiogram and chest CT. This is to watch for any anyeurisms or dilation of the blood vessels that can lead to vascular rupture. I keep an emergency card in my wallet that explains EDS and the risk for vascular rupture. If I had an aortic dissection, minutes can be the difference between life and death.
          Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

          I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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            #35
            My pain doctor was recently raided by the FBI they are out for these doctors they are afraid for good reason

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              #36
              Thanks for the info on E.D.S. Being in the medical field, I remember reading about it 35 years ago and found it an 'interesting' condition. Never 'met' anyone with it until now. I appreciate your knowledge about pain and your opinions in general.

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                #37
                yw! So much more is known about it now than 35 years ago. Even in the last 10 years, I was diagnosed in 2001. One odd thing was when I was diagnosed they told me you can't pass on EDS more severely than you have it. But my dad and I were both at the appt, and they ended up diagnosing him with EDS as well. But he was 51, and at 16 I was in worse shape than him! So it didn't really make any sense. Now they know thats completely bogus. And they used to think the types were distinct, which lead to people without vascular type dying of vascular ruptures. With no cure its about maintenance and prevention which has greatly improved with the additional knowledge.

                What do you do in the medical field? I love medicine, when I'm not the patient I really love being in hospitals. I was a candy striper back in high school. When I get my health under control I plan on going back to school to become a physician. I love all the stuff I've learned from this site already. I had no idea about the vast degree of spinal cord injuries. I'd never heard of complete or incomplete before. I thought quadriplegia meant you had no use of any of your limbs.
                Last edited by ~Lin; 18 Feb 2012, 1:14 AM.
                Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                Comment


                  #38
                  Everyone has different levels of pain, but for me i've become semi-scared of become so heavily addicted to narcotic pain killers that i simply only take my oxy's when the pain is at a searing mind numbing level. If though the pain just just very annoying, i suck it up and deal with it so long as it's during the day where i can try to distract my brain with activities compared to laying in bed at night.

                  This also allows me to have extra pills for stretches when the pain is excruciating with no break.

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                    #39
                    I wish that I could. I try, but I can almost set my clock by the pain in my back. I work just to make it the 12 hours I'm supposed to wait in-between pills. I also do not think that addiction is as much of a threat if you are only taking what you need to address your pain issues. It also does not make me drowsy at all, but most people take it that don't have any pain and it knocks them out cold.

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                      #40
                      <--- freaked about oxy and addiction too.
                      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                        #41
                        Originally posted by nauticalmike View Post
                        I guess that I was not very clear with my post. I receive $1990/month SSDi. The Federal guideline for individual is $600/month. With the standard $20 deduction that leaves me with $1370/ month excess income. So I am responsible for the first $1370 for my medical bills. They will pay for anything that exceeds the $1370...

                        Here's a good one too. I was told that my doctor hard put through a request to get me a new wheelchair. When I inquired about the specifics, like where do I go get it etc. they came back with a denial. But here is the funny part. I was denied because I can not prove that I have a caregiver that is willing and able to help me with it. Uh ya, I live alone... I guess that wheelchairs are too dangerous for someone that is disabled to have. Yep they are right!!! If they replaced my current chair that I paid for with one they provided, I jut might get out of bed some day, right? There were two other reason given as well that were less stupid, but still dumb. One was that I had not demonstrated that I could use wheelchair in my house, Nope only been doing that with my own chair for the last little over a year now. The last one was that I had not proven that a cane or fixed brace would not work as well. Hello, I can't walk wit a cane, and no one has ever offered to set me up with braces either. But i couldn't get by without a chair. At least not happily. I mean sure I guess that i could eat every meal standing up in my kitchen, but I don't want to...I've never tried , but carrying a plate of food or carrying drink on my walker is impossible. It's difficult enough balancing stuff on my lap in the chair.
                        OMG, I actually laughed at your post!! AND no it wasn't a ha ha ha that's funny type laugh it was more of a nervous OMG laugh! I am stunned you were turned down for a wheelchair because you live alone. Did I read that right? If I read that right.....I am flabbergasted!!!

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                          #42
                          Taking pain meds as prescribed is not an addiction risk. There is no need to be so afraid. Of course I respect anyone that wants to limit their pain meds, but don't make others afraid or ashamed of taking pain meds in the process. Not saying thats been done here, but its something that happens a lot. More so with people that don't understand chronic pain making those with it ashamed or afraid. I wonder how many of you are now afraid for that reason?

                          Its taking meds not as prescribed, changing doses without discussing it with your dr, mixing your meds with things that you shouldn't, and so forth that are down the path of addiction. Taking what pain meds you need to function as prescribed by a pain management specialist is not to be feared. Take that concern and channel it into proper useage of your meds, keeping an eye on things such as combining OTC meds and avoiding alcohol and so forth.
                          Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                          I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                          Comment


                            #43
                            Originally posted by ~Lin View Post
                            Taking pain meds as prescribed is not an addiction risk. There is no need to be so afraid. Of course I respect anyone that wants to limit their pain meds, but don't make others afraid or ashamed of taking pain meds in the process. Not saying thats been done here, but its something that happens a lot. More so with people that don't understand chronic pain making those with it ashamed or afraid. I wonder how many of you are now afraid for that reason?

                            Its taking meds not as prescribed, changing doses without discussing it with your dr, mixing your meds with things that you shouldn't, and so forth that are down the path of addiction. Taking what pain meds you need to function as prescribed by a pain management specialist is not to be feared. Take that concern and channel it into proper useage of your meds, keeping an eye on things such as combining OTC meds and avoiding alcohol and so forth.
                            Thanks for your post Lin.

                            I have been prescribed Tramadol and in doing my research came across some pretty disturbing revelations of addiction and withdrawals. I'm torn about the research and had a mini panic attack thinking I would be addicted to something. I've thought about it, analyzed my findings and pretty much had concluded that those that were addicted, took way too many, were mixing with drugs not prescribed, obtaining drugs illegally, taking them for a buzz, etc. I take my pills when "I AM IN PAIN." I don't double up, don't take anything not prescribed, and don't purchase drugs off the internet.

                            I think I will be ok --I think!


                            I have started a new thread on the subject so I don't hijack this one.
                            Last edited by ~Maria; 27 Feb 2012, 11:42 AM.

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                              #44
                              Originally posted by ~Maria View Post
                              Thanks for your post Lin.

                              I have been prescribed Tramadol and in doing my research came across some pretty disturbing revelations of addiction and withdrawals. I'm torn about the research and had a mini panic attack thinking I would be addicted to something. I've thought about it, analyzed my findings and pretty much had concluded that those that were addicted, took way too many, were mixing with drugs not prescribed, obtaining drugs illegally, taking them for a buzz, etc. I take my pills when "I AM IN PAIN." I don't double up, don't take anything not prescribed, and don't purchase drugs off the internet.

                              I think I will be ok --I think!


                              I have started a new thread on the subject so I don't hijack this one.
                              I posted my philosophy on another thread, but it can't hurt to repeat it here. My philosophy is simple. taking pain killers to address your pain is safe. Intil you are taking them at a level in which serotonin is being released and you are experiencing pleasure from taking them then addiction is unlikely even if taken for a long time. I am basing this philosophy on a close friend that has taken just about every drug known to man that is illegal or otherwise and has avoided ruining his life by taking them until he was tired of them and didn't think that they were fun any more. Then he just quit cold turkey with no withdrawals at all.

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                                #45
                                Originally posted by nauticalmike View Post
                                I posted my philosophy on another thread, but it can't hurt to repeat it here. My philosophy is simple. taking pain killers to address your pain is safe. Intil you are taking them at a level in which serotonin is being released and you are experiencing pleasure from taking them then addiction is unlikely even if taken for a long time. I am basing this philosophy on a close friend that has taken just about every drug known to man that is illegal or otherwise and has avoided ruining his life by taking them until he was tired of them and didn't think that they were fun any more. Then he just quit cold turkey with no withdrawals at all.
                                God Bless you for your post, really puts my mind at ease. I have been really scared by all the posts of withdrawals, etc.. I have never gotten a buzz from any drug I have been put on, it eases my pain and that's it. Thank you.

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