I am in soo much pain. Last month I started a new medication called Lyrica. If you watch TV (and you are in the USA), you know that it's used for fibromyalgia. I have many symptoms for that, but I don't have the 'tender spots' that generally go with it. I had been on Gapapentin but 1) it ballooooned me in weight 2) it gave me the worst brain fog and 3) it didn't help my pain. it helped other thigns like tingling, and when i was recovering from surgery last year, i had the worst burning nerve pain and it helped me then! But not for the pelvic pain I have now.
Last month, before I started Lyrica, my pain was astronomically bad. Way worse than other pain spells!!! My pain medication (oxycodone) did not help ONE bit. Out of desperation, I took more than my dose said- nothing. And for you freaks who make me feel like an addict when I talk about taking oxycodone- I took 2 5 mg pills every 2 hours for 6 hours (I generally would take 2 every 4-6 hours , with ONe pill extra for level 10 breakthrough pain)- this was agreed upon with my doctor. Anyway, On the third day of this spell (the spells generally last 10-15 days)- I started the Lyrica- and I didn't need an oxycodone for the rest of the month- I might have taken ONE for breakthrough pain. So it got me excited- yay a medication that helps me so I don't have to take much oxycodone!
Then this pain spell started about a week ago. I thought the pain last month was astronomical. This month, it's been BEYOND astronomical. I can hardly move. I tremble. I cry. It's awful.
I just sent my doctor an email. I hope she takes me seriously when I say that my pain exceeds the dose I'm given. I want her to work with me not make me feel like an addict. I'm not! I don't even think about my medication when I'm not in pain. I'm seriously at a 20. 10 would be easy to deal with! I don't know what to do besides scream. It' snot like I want to take 30 mg every hour. I don't know how much I should take but 10 mg every 4-6 hours is not cutting it. 10 mg hardly lasts an hour! 15 mg lasts 2 and a half hours with TOLERABLE breakthrough pain. I just don't know what to do!
The problem is, when I talk about my medicine and how it doesn't help me I'm always lectured about dependency and addiction. My doctors are worried more about my dosage than the degree of my pain. I mean WHY, when I ask them if is there any way my dosage can be increaed because I can NO LONGER function when the wave of pain comes- nobody but my pain shrink (yes I have a pain shrink) seems concerned about me. The first response generally consists of a lecture. How in the world can my doctors not think. "oh my goodness- I can't believe you are in this much pain- let's work on this and see how you feel" -no not at all. I'm so depressed about it. I wish there could be something attached to me that gives a reading for the amount of pain I feel to PROVE to them how I'm feeling. I mean it's not like I have a little owie. I have god damn tumors that are growing.
I don't give a shit if narc addicts start out with needing it for pain and getting dependent on it. Fuck that shit. My pain spells last 10-15 days and It ake the medication then and then only. I don't desire the medication when I'm not in pain. And yes, when I'm at a 10, I am desperate for it because it helps me FEEL better. If I ran ot of medicien and I was at a 10, it would be a dire situation. If I run otu of medicine and my pain is at a 5 or lower - I am NOT desperate for it. Do you guys fucking understand me? Is it THAT hard to understand that I have tumors growing in my body and it hurts more than words can describe? Why are most of you people so quick to judge me or be "worried" I'll get addicted and really NOT worried that every month, my pain gets worse and worse and there' snothing that can be done because they're too small? But since they're on nerves, the pain spreads throughout one side of my body to the point where if I had a real job, i'd probably have to quit? Why is it that people are not concerned at the pain I'm experiencing? I'll be so happy if there is some scientfic breakthrough that comes about with NF so I DON'T have to take a narcotic. I don't know why people, especially my doctors, don't know the difference between despration to feel better when my pain is at a 10 and a dependency? OK so I'm dependent on the drug when I'm in pain. But everybody is dependent on some kind of medication- asthma medication, diabetes medication, blood pressure medication, etc etc etc. But becuse tumors are growing in my body, the pain is getting worse every month, and I can't NEED this medicine to help me without talking about it and people raising their eyebrows at me. If you only care about the doseage and not my well being go fuck yourself.
Sorry I'm just so angry right now. I'm so angry that my health care is slowed down because there are dumbass motherfucking people who abuse narcotics- so now EVERYBODY who needs it has the stigma of getting addicted. Unless somebody has cancer, no doctor TRULY works with a patient with pain meds. No I don't have cancer but I HAVE TUMORS THAT ARE GROWING. The only difference betewen my tumor growth and cancer is that these tumors won't kill me - even if I'm not treated. It's a lifelong sentence of worsening pain and nobody cares. It's so depressing. And if my doctor does not seem concerned about my worsening condition, I am going to search for a doctor who will work with me. And holy Zeus please don't read this as I think cancer patients have it better because doctors are better with them- I'm just trying to explain that doctors don't generally care about tumors unelss it's cancer, but I feel neglected because my tumors HURT me when they grow- they hurt me a LOT, but I'm generally dismissed! Does that make sense!?
I tried talking about this to my doctor last time but I was dismissed. what I'd really like to do is get on a stronger medicaiton so I can take LESS of it. I don't think oxycodone is the right medicine for my pain. I think it's a temporary cover up for the pain. I don't know what medicines exist- but I want something that will help me- so I can take one or two pills a DAY during my spell- not 6-8 pills a day! Is that too much to ask? Or do I sound like an addict? GAHHH.
And I also hate myself when I talk about pain because I know there are people who have cancer and they are suffering and here I am- I have benign tumors but otherwise healthy and I'm all wah wah wah. But really- I can't emphasize enough. I have a high pain threshold. I can't function anymore. If I was working for the last week with this pain- I don't even know what would have happened!!! I know I'd be crying in public that's for sure. At least here at home (in our new wonderful home)- I can cuddle with my cats or huddle in fetal position on the couch and watch court shows. Oh unemployment!
Rant over.
Anyway- I saw a pulmonologist team the other day. Thankfully the team is willing to take me on since I have NF and a history of cancer. And since new ones grew, we need to see if MORE will grow.
I saw my gastro doc- sort of ap ointless visit because I am doing everything he would have told me to do if I knew nothing about gastroenterology. It's pretty sad that I've been to doctors so much I am learning how to diagnose and treat MYSELF when it comes to some things. maybe I should go to med school and be my own doctor. I can go to a mirror and say "open your mouth and say AHHH" :-P but as much as I hate this guy- in previous entries I linked the entry that explains why I hate him- since he IS my doctor and since HE was the one who found my cancer in the first place and he therefore knows my history well (and other than his idiot lapse that really screwed me over, he DOES know what he's doing and he IS empathetic to my pain)- I'm sticking with him for minor things. I saw him bc my stomach has stopped working. I hardly make bowel movements and food just ..stays in my belly. I KNOW that narcotics cause constipation, but I've been on them since August 2011. I've always had rememdies- like , lattes-- that ALAWYS worked during my pain spells. I've never been this constipated before- it's even worse than what I had after last summer's surgery! It's been a constant problem since June. So I have some ideas to help get things moving and if it doesn't work (i mean it hasn't REALLY worked since June, but oh well) he has other treatment options.
Otherwise i'm still looking for a job. I've had some success with NON higher education based jobs. So we'll see.
Last month, before I started Lyrica, my pain was astronomically bad. Way worse than other pain spells!!! My pain medication (oxycodone) did not help ONE bit. Out of desperation, I took more than my dose said- nothing. And for you freaks who make me feel like an addict when I talk about taking oxycodone- I took 2 5 mg pills every 2 hours for 6 hours (I generally would take 2 every 4-6 hours , with ONe pill extra for level 10 breakthrough pain)- this was agreed upon with my doctor. Anyway, On the third day of this spell (the spells generally last 10-15 days)- I started the Lyrica- and I didn't need an oxycodone for the rest of the month- I might have taken ONE for breakthrough pain. So it got me excited- yay a medication that helps me so I don't have to take much oxycodone!
Then this pain spell started about a week ago. I thought the pain last month was astronomical. This month, it's been BEYOND astronomical. I can hardly move. I tremble. I cry. It's awful.
I just sent my doctor an email. I hope she takes me seriously when I say that my pain exceeds the dose I'm given. I want her to work with me not make me feel like an addict. I'm not! I don't even think about my medication when I'm not in pain. I'm seriously at a 20. 10 would be easy to deal with! I don't know what to do besides scream. It' snot like I want to take 30 mg every hour. I don't know how much I should take but 10 mg every 4-6 hours is not cutting it. 10 mg hardly lasts an hour! 15 mg lasts 2 and a half hours with TOLERABLE breakthrough pain. I just don't know what to do!
The problem is, when I talk about my medicine and how it doesn't help me I'm always lectured about dependency and addiction. My doctors are worried more about my dosage than the degree of my pain. I mean WHY, when I ask them if is there any way my dosage can be increaed because I can NO LONGER function when the wave of pain comes- nobody but my pain shrink (yes I have a pain shrink) seems concerned about me. The first response generally consists of a lecture. How in the world can my doctors not think. "oh my goodness- I can't believe you are in this much pain- let's work on this and see how you feel" -no not at all. I'm so depressed about it. I wish there could be something attached to me that gives a reading for the amount of pain I feel to PROVE to them how I'm feeling. I mean it's not like I have a little owie. I have god damn tumors that are growing.
I don't give a shit if narc addicts start out with needing it for pain and getting dependent on it. Fuck that shit. My pain spells last 10-15 days and It ake the medication then and then only. I don't desire the medication when I'm not in pain. And yes, when I'm at a 10, I am desperate for it because it helps me FEEL better. If I ran ot of medicien and I was at a 10, it would be a dire situation. If I run otu of medicine and my pain is at a 5 or lower - I am NOT desperate for it. Do you guys fucking understand me? Is it THAT hard to understand that I have tumors growing in my body and it hurts more than words can describe? Why are most of you people so quick to judge me or be "worried" I'll get addicted and really NOT worried that every month, my pain gets worse and worse and there' snothing that can be done because they're too small? But since they're on nerves, the pain spreads throughout one side of my body to the point where if I had a real job, i'd probably have to quit? Why is it that people are not concerned at the pain I'm experiencing? I'll be so happy if there is some scientfic breakthrough that comes about with NF so I DON'T have to take a narcotic. I don't know why people, especially my doctors, don't know the difference between despration to feel better when my pain is at a 10 and a dependency? OK so I'm dependent on the drug when I'm in pain. But everybody is dependent on some kind of medication- asthma medication, diabetes medication, blood pressure medication, etc etc etc. But becuse tumors are growing in my body, the pain is getting worse every month, and I can't NEED this medicine to help me without talking about it and people raising their eyebrows at me. If you only care about the doseage and not my well being go fuck yourself.
Sorry I'm just so angry right now. I'm so angry that my health care is slowed down because there are dumbass motherfucking people who abuse narcotics- so now EVERYBODY who needs it has the stigma of getting addicted. Unless somebody has cancer, no doctor TRULY works with a patient with pain meds. No I don't have cancer but I HAVE TUMORS THAT ARE GROWING. The only difference betewen my tumor growth and cancer is that these tumors won't kill me - even if I'm not treated. It's a lifelong sentence of worsening pain and nobody cares. It's so depressing. And if my doctor does not seem concerned about my worsening condition, I am going to search for a doctor who will work with me. And holy Zeus please don't read this as I think cancer patients have it better because doctors are better with them- I'm just trying to explain that doctors don't generally care about tumors unelss it's cancer, but I feel neglected because my tumors HURT me when they grow- they hurt me a LOT, but I'm generally dismissed! Does that make sense!?
I tried talking about this to my doctor last time but I was dismissed. what I'd really like to do is get on a stronger medicaiton so I can take LESS of it. I don't think oxycodone is the right medicine for my pain. I think it's a temporary cover up for the pain. I don't know what medicines exist- but I want something that will help me- so I can take one or two pills a DAY during my spell- not 6-8 pills a day! Is that too much to ask? Or do I sound like an addict? GAHHH.
And I also hate myself when I talk about pain because I know there are people who have cancer and they are suffering and here I am- I have benign tumors but otherwise healthy and I'm all wah wah wah. But really- I can't emphasize enough. I have a high pain threshold. I can't function anymore. If I was working for the last week with this pain- I don't even know what would have happened!!! I know I'd be crying in public that's for sure. At least here at home (in our new wonderful home)- I can cuddle with my cats or huddle in fetal position on the couch and watch court shows. Oh unemployment!
Rant over.
Anyway- I saw a pulmonologist team the other day. Thankfully the team is willing to take me on since I have NF and a history of cancer. And since new ones grew, we need to see if MORE will grow.
I saw my gastro doc- sort of ap ointless visit because I am doing everything he would have told me to do if I knew nothing about gastroenterology. It's pretty sad that I've been to doctors so much I am learning how to diagnose and treat MYSELF when it comes to some things. maybe I should go to med school and be my own doctor. I can go to a mirror and say "open your mouth and say AHHH" :-P but as much as I hate this guy- in previous entries I linked the entry that explains why I hate him- since he IS my doctor and since HE was the one who found my cancer in the first place and he therefore knows my history well (and other than his idiot lapse that really screwed me over, he DOES know what he's doing and he IS empathetic to my pain)- I'm sticking with him for minor things. I saw him bc my stomach has stopped working. I hardly make bowel movements and food just ..stays in my belly. I KNOW that narcotics cause constipation, but I've been on them since August 2011. I've always had rememdies- like , lattes-- that ALAWYS worked during my pain spells. I've never been this constipated before- it's even worse than what I had after last summer's surgery! It's been a constant problem since June. So I have some ideas to help get things moving and if it doesn't work (i mean it hasn't REALLY worked since June, but oh well) he has other treatment options.
Otherwise i'm still looking for a job. I've had some success with NON higher education based jobs. So we'll see.
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