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Post by Deleted on Apr 18, 2016 22:46:03 GMT
I think it's hard for people to really understand chronic pain. I tried so hard to not take opiates. Like I said previously I sought out (and still do) natural forms of healing, have had ten surgeries, tried changing my diet and going gluten free, had dental work done to take care of the tooth pain, etc. The last time I had Endo surgery I was in for over 5 hours. It was suppose to be outpatient. They had to keep me for 3 days because my pulse wouldn't drop from 160.
Without pain meds my pulse goes to 130. It's not unusual for me to vomit, shake and even pass out. We're not talking just pain that hurts. It goes way beyond that.
My pain management doctor is amazing! I've been going to him for at least five years now. I pass every drug test and have in my system what I should have and not what I shouldn't. Ever. There is a small minority that actually abuse pain meds.
I don't want to be on them but seriously I have tried so many different things. Some of the treatments made me worse (I had bleeding ulcers and colitis at the same time and was hospitalized for ten days). It's super frustrating for those with legitimate pain who have exhausted so many other options. Foe the record though, I wouldn't go find heroin. I don't even know where I could find it. I have been suicidal over the pain before. I honestly wonder if the suicide rate would go up. I have also had pain from two serious accidents. One in 2006 where I was hit by a drunk driver and the car was totaled. The most recent one was just last October where the car was totaled. I did find massage and myopractic care helped a lot but it's too expensive when it's not covered by insurance.
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Post by Deleted on Apr 18, 2016 22:49:46 GMT
Have any of you considered medical marijuana if it's legal in your state? I have 4 of the 30 something conditions the state of Illinois will consider for medical marijuana. I have never in my life done illegal drugs, so I have no idea how it will help me or not. But the thought of something natural, that's regulated intrigues me. I'm going to get a top denture done soon (already have a bottom one). My dental issues hve caused a nasty case of Trigeminal Neuralgia (it's lovely nickname is suicide disease, just to give a hint of how ugly it is to have). Anytime I have teeth issues, it flares up, so I've made the decision to get rid of the cause. My hope is that will take away 2 medications I need to control it, & the monthly pain medication can be cut back. So I'm working any angle I can, but I can't do anything about the other chronic conditions. The 4 that would qualify me for medical marijuana, Rheumtoid Arthritis, Sjogrens Syndrome, Ulcerative Colitis & Fibromyalgia, can only be managed. Ugh, I know there is no good answer. I want to be selfish & say screw those addicted people, but I live in this society too & know burying my head to the *whole* situation won't work. It's just terribly frustrating, the 5 conditions I mentioned in this post are just the start of medical problems. There's literally not a spot on my body that something hasn't gone wrong from head (brain tumor when I was 5) to my feet, rheumatoid & osteoarthritis causing damage. Is the Trigeminal Neuralgia: TMJ? If so, I have it. Mine must be basic, because it only flairs up after I eat or drink something sour. Then it hurts like BAD pins & needles in my jaw. I've never taken anything for it but a dentist first diagnosed me with it and said that it's in families (my dad had it). About the medical marijuana: I've never tried any 'street drug' in my life. I've never even smoked a cigarette. In 2009, a doctor in NJ told me that I could apply for the card because of my head injuries. I never did get it. It didn't matter because NJ didn't have any dispensaries at that time. If I could try it now, I would, but only in oil form (drops under my tongue) or pill-form. I would never smoke anything because of my COPD. I'd also have to be able to function---to drive, to be alert/aware, and possibly take care of children. If I also knew the side effects, then I'd try it. I'm looking for anything that would be healthier than the opiods I'm on now, but I'd also like to cut out a lot of my needed Rx's for regular issues too! BTW, a sister of mine heard that medical marijuana worked on little kids who had brain issues (similar to my issue--it's head trauma, but is closest to brain trauma). Finding meds that are effective to get to specific head pain is very difficult. Even pain mgmt doctors aren't familiar with it, nor are neurologists. It's a hit or miss. But I'd try the mm.
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Post by Deleted on Apr 18, 2016 23:08:38 GMT
There are hospitals that are going opiod free. They are no longer dispensing Vicodin/Norco in ER or prescribing them on discharge. Dilaudid, Demerol, Fentanyl and Morphine are also on the hit lists. Working in PACU, we are receiving new guidelines from the national anesthesia and nursing organizations regarding post surgical pain relief also in regards to these drugs and Vicodin/Norco. I have seen an increase in prescription strength Ibuprofen and Tylenol #3. It's been months since I have seen a post surgical discharge with a Vicodin prescription for pain on discharge. Doctors hate the triplicate scripts. And the headaches involved in keeping up with filing all the necessary paperwork to go with them. And monitoring for refills and lab tests for refills. When we do see one, the patient always asks which pharmacy to go to fill it, because the pharmacies they go to are always out. Big flag to us nurses. We just tell them to keep trying, we can't help with that issue. Pharmacies are also limited to the amounts they can dispense in total in a period of time, and how much can be dispensed to an individual in a period of time. There is a tracking system. It sounds like a big deal and it sounds like Big Pharma etc and government trying to control lives, but what is happening is to control the amount a person should reasonably have to prevent death. Drug companies and pharmacies that dispense have been sued. The government has been sued. Doctor have been sued. Narcotics and other pain medications impair judgement. Do you really know when you have had enough just because it doesn't seem to be working? Is it unreasonable that laws need to be placed to protect the people from themselves??? And doctors, drug companies and pharmacies need some protection also. OKAY, this makes me very, very mad and upset!!! I had a bad accident (shot in the eye with a bb gun at close range, lost the eye and part of my face. The bb was pressed further into my socket when the surgeon first tried to retrieve it, causing my INTENSE daily pain). What did the surgeons give me after I went home the first time (I had over 30 surgeries!): "Take some aspirin if you have pain". So........... when and why did doctors and surgeons begin giving heavy-duty meds out like candy? Shit! I would have taken some back then to take the edge off. I could think of 50 or so times when I REALLY needed something heavy-duty to zone me out, but I had NOTHING!!!!!!!!! I suppose it's why I"m a "strong soldier" these days, but it pisses me off that people go through easy surgeries and get put on highly addictive, serious meds!!! This messed it up for me now and for so many people in my position. My situation got worse with age (more pain) and I began to be put on opiates vs. aspirin (that destroyed my stomach and esophogus). I don't have a hard time getting my meds monthly b/c I go to a pain mgmt team and they're on top of my situation + I fight with my medicare people (Humana) until they understand my situation. My meds are ready for me monthly, without the hassle. I bring ALL of my meds to 1 pharmacy and nothing is sketchy. I don't drink, smoke, do recreational drugs, nada. I'm checked every 3 months (blood/urine) to make sure I'm within the pain team's guidelines. It's serious stuff. Again, it's a damned shame to immediately put innocent people on heavy-duty meds for something they should try to get through with a couple of tylenol to start. It's as though they don't want them to work through the pain. They want them hooked right away. WHY? To give another patient to big pharma? It makes me sick! P.S.: My Rx (I believe) is Tylenol #4 (Fioricet: tylenol/codeine/caffeine/butalb) and I'm monitored. I use Maxalt as my rescue drug (we fiddle around to try to find what's most effective--it's a tough thing to do!). I've NEVER been prescribed anything to knock me out, such as vicodin, oxy, percocet, percodan, etc........... I have been prescribed a drawful of meds that didn't work, and the most serious (to me) was morphine, but even with that rescue Rx, I was able to function, and was never woozy, sleepy or "high". Maybe I have more diligent doctors or I have a very high tolerance. Not sure.......... I just wish that doctors wouldn't prescribe serious meds so easily!!!
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Post by Linda on Apr 18, 2016 23:13:57 GMT
I don't take pain meds regularly (thankfully) but all the doctor's offices I've been in lately have signs up that they don't prescribe pain meds and will refer to a pain management clinic if needed. I do know that when I have needed pain meds in the recent past (post dental surgery for instance) - it's been difficult to get them. I'm allergic to tylenol (hives and wheezing) and the base level of pain meds above ibuprofen often seem to be tylenol+ something else and I get treated like I'm drug seeking because I can't take those and need to go up one level to something like Tramadol. I can't imagine what it might be like if I had a chronic condition and needed more than the 5 pills they prescribed me last time (of which I only took 2 - the darn things knock me out for 12+ hours each) Linda: That's my life. Chronic, severe pain, every single day since the day of my accident in 1974. I live with it and honestly don't think too much about it. But now that I'm older (55), everything I put in my mouth to combat that pain or to deal with side effects of those pain meds, has come to hit me in the face. So I'm faced with my initial pain situation, and now have COPD, GERD, diverticulosis, asthma, and a bunch of "regular older people" situations (high blood pressure, high cholesterol, thyroid issues, need of estrogen, need for sleep meds..........). Tramadol was actually a horror for me. A few Rx's were! Even though my Fioricet is in the opiate category, it's still pretty mild. I *am* on 6 pills per day, which is appropriate for my weight, but it's the MAXIMUM that anyone should have. They continually ask me why and I remind them. It's all cool. I'm really trying to find the right meds to combat the pain with the least side effects. It's a battle, but I pretend to be fine every day! prayers and gentle ((((Hugs)))
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Post by Deleted on Apr 18, 2016 23:19:43 GMT
I think it's hard for people to really understand chronic pain. I tried so hard to not take opiates. Like I said previously I sought out (and still do) natural forms of healing, have had ten surgeries, tried changing my diet and going gluten free, had dental work done to take care of the tooth pain, etc. The last time I had Endo surgery I was in for over 5 hours. It was suppose to be outpatient. They had to keep me for 3 days because my pulse wouldn't drop from 160. Without pain meds my pulse goes to 130. It's not unusual for me to vomit, shake and even pass out. We're not talking just pain that hurts. It goes way beyond that. My pain management doctor is amazing! I've been going to him for at least five years now. I pass every drug test and have in my system what I should have and not what I shouldn't. Ever. There is a small minority that actually abuse pain meds. I don't want to be on them but seriously I have tried so many different things. Some of the treatments made me worse (I had bleeding ulcers and colitis at the same time and was hospitalized for ten days). It's super frustrating for those with legitimate pain who have exhausted so many other options. Foe the record though, I wouldn't go find heroin. I don't even know where I could find it. I have been suicidal over the pain before. I honestly wonder if the suicide rate would go up. I have also had pain from two serious accidents. One in 2006 where I was hit by a drunk driver and the car was totaled. The most recent one was just last October where the car was totaled. I did find massage and myopractic care helped a lot but it's too expensive when it's not covered by insurance. me: I'm so sorry. I didn't know you went through this. I DO understand your pain. I've been in similar pain since 1974, every single day. I have no idea why I'm not depressed, suicidal or anxious over it. My pain mgmt team has a psychiatrist associated with their team. I could speak to her if I become despondent over my pain. I carry her card but I'm not at that point (again, don't know why!). I thought I'd have bleeding ulcers when I went in for a colonscopy and endoscopy, but it showed that I had diverticulosis and GERD and COPD (all erosion). I'm on mega-doses of meds to coat my throat, stomach and colon. Lovely........ I try to watch my diet and be reasonable. I've been to hospitals for other things and they can't give me my regular pain meds, so I leave with vomit-worthy pain (unless I sneak my own meds in!). It's crazy. I had a hysterectomy and wound up in the ICU because my pulse was at 120, with the vomiting, shaking, etc....... Same scenario, so I know where you're at, unfortunately. I'm so sorry. As for massage, it's funny that when I get my hair done, I'm pain-free!!! If I had a head massage (like washing your hair) daily, I might be okay!! No one approves it. That's interesting & I should bring it up to my pain mgmt team to see if some kind of massage therapy would help. I doubt it would be covered too! Prayers to you to stay healthy or stay stable! I finished surgery a year ago and am not nearly done, but I quit. I can't go through more surgeries and years of more recovery. I"m too old for that!
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Post by mellyw on Apr 19, 2016 1:27:15 GMT
Have any of you considered medical marijuana if it's legal in your state? I have 4 of the 30 something conditions the state of Illinois will consider for medical marijuana. I have never in my life done illegal drugs, so I have no idea how it will help me or not. But the thought of something natural, that's regulated intrigues me. I'm going to get a top denture done soon (already have a bottom one). My dental issues hve caused a nasty case of Trigeminal Neuralgia (it's lovely nickname is suicide disease, just to give a hint of how ugly it is to have). Anytime I have teeth issues, it flares up, so I've made the decision to get rid of the cause. My hope is that will take away 2 medications I need to control it, & the monthly pain medication can be cut back. So I'm working any angle I can, but I can't do anything about the other chronic conditions. The 4 that would qualify me for medical marijuana, Rheumtoid Arthritis, Sjogrens Syndrome, Ulcerative Colitis & Fibromyalgia, can only be managed. Ugh, I know there is no good answer. I want to be selfish & say screw those addicted people, but I live in this society too & know burying my head to the *whole* situation won't work. It's just terribly frustrating, the 5 conditions I mentioned in this post are just the start of medical problems. There's literally not a spot on my body that something hasn't gone wrong from head (brain tumor when I was 5) to my feet, rheumatoid & osteoarthritis causing damage. Is the Trigeminal Neuralgia: TMJ? If so, I have it. Mine must be basic, because it only flairs up after I eat or drink something sour. Then it hurts like BAD pins & needles in my jaw. I've never taken anything for it but a dentist first diagnosed me with it and said that it's in families (my dad had it). About the medical marijuana: I've never tried any 'street drug' in my life. I've never even smoked a cigarette. In 2009, a doctor in NJ told me that I could apply for the card because of my head injuries. I never did get it. It didn't matter because NJ didn't have any dispensaries at that time. If I could try it now, I would, but only in oil form (drops under my tongue) or pill-form. I would never smoke anything because of my COPD. I'd also have to be able to function---to drive, to be alert/aware, and possibly take care of children. If I also knew the side effects, then I'd try it. I'm looking for anything that would be healthier than the opiods I'm on now, but I'd also like to cut out a lot of my needed Rx's for regular issues too! BTW, a sister of mine heard that medical marijuana worked on little kids who had brain issues (similar to my issue--it's head trauma, but is closest to brain trauma). Finding meds that are effective to get to specific head pain is very difficult. Even pain mgmt doctors aren't familiar with it, nor are neurologists. It's a hit or miss. But I'd try the mm. No, Trigeminal Neuralgia isn't TMJ. Basically the sheath covering the trigeminal nerve malfunctions, causing nerve pain. It feels like electrical shocks bouncing around you brain. I know I'm very lucky that mine is pretty controlled with medication. Not always the case, & then you get to play is the risky surgery worth it. I'm in the same boat, have no idea what marijuana will do for me. Almost makes me wish I had tried it in my younger years. And no way in Hell will I do illegally, so it will have to be blind faith if I go for it. There is a dispensary just down the road from me, right across from the state police (thought that was a smart location!) I fought using opiates for so many years & I can truthfully say I simply do not care anymore. My pain is not livable at times. And there is medication that I can take that gets me thru. It's just really unfortunate others want to abuse it.
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Deleted
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 2:38:04 GMT
I think it's hard for people to really understand chronic pain. I tried so hard to not take opiates. Like I said previously I sought out (and still do) natural forms of healing, have had ten surgeries, tried changing my diet and going gluten free, had dental work done to take care of the tooth pain, etc. The last time I had Endo surgery I was in for over 5 hours. It was suppose to be outpatient. They had to keep me for 3 days because my pulse wouldn't drop from 160. Without pain meds my pulse goes to 130. It's not unusual for me to vomit, shake and even pass out. We're not talking just pain that hurts. It goes way beyond that. My pain management doctor is amazing! I've been going to him for at least five years now. I pass every drug test and have in my system what I should have and not what I shouldn't. Ever. There is a small minority that actually abuse pain meds. I don't want to be on them but seriously I have tried so many different things. Some of the treatments made me worse (I had bleeding ulcers and colitis at the same time and was hospitalized for ten days). It's super frustrating for those with legitimate pain who have exhausted so many other options. Foe the record though, I wouldn't go find heroin. I don't even know where I could find it. I have been suicidal over the pain before. I honestly wonder if the suicide rate would go up. I have also had pain from two serious accidents. One in 2006 where I was hit by a drunk driver and the car was totaled. The most recent one was just last October where the car was totaled. I did find massage and myopractic care helped a lot but it's too expensive when it's not covered by insurance. me: I'm so sorry. I didn't know you went through this. I DO understand your pain. I've been in similar pain since 1974, every single day. I have no idea why I'm not depressed, suicidal or anxious over it. My pain mgmt team has a psychiatrist associated with their team. I could speak to her if I become despondent over my pain. I carry her card but I'm not at that point (again, don't know why!). I thought I'd have bleeding ulcers when I went in for a colonscopy and endoscopy, but it showed that I had diverticulosis and GERD and COPD (all erosion). I'm on mega-doses of meds to coat my throat, stomach and colon. Lovely........ I try to watch my diet and be reasonable. I've been to hospitals for other things and they can't give me my regular pain meds, so I leave with vomit-worthy pain (unless I sneak my own meds in!). It's crazy. I had a hysterectomy and wound up in the ICU because my pulse was at 120, with the vomiting, shaking, etc....... Same scenario, so I know where you're at, unfortunately. I'm so sorry. As for massage, it's funny that when I get my hair done, I'm pain-free!!! If I had a head massage (like washing your hair) daily, I might be okay!! No one approves it. That's interesting & I should bring it up to my pain mgmt team to see if some kind of massage therapy would help. I doubt it would be covered too! Prayers to you to stay healthy or stay stable! I finished surgery a year ago and am not nearly done, but I quit. I can't go through more surgeries and years of more recovery. I"m too old for that! Thanks! I didn't struggle with depression before the pain came. I did, however, struggle with anxiety. It's not fun but I am not suicidal right now. It's just hard for those not experiencing it to understand and for that I am grateful. I would never want anyone to hurt. I am glad they got your pain down. It's frustrating, too, that insurance will cover so many medications but not therapies that actually work. My insurance covers all of my pain meds but nor physical therapy or other treatments that work towards healing it.
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Post by Lexica on Apr 19, 2016 3:24:36 GMT
First, I want to hug each of you dealing with chronic and debilitating pain. And I will be honest here, and admit that before I became a chronic pain patient myself, I would not have understood the magnitude of it and the extent to which someone's life is affected. I have not yet been negatively affected by this recent change, and I pray I won't be. I am on a time-released morphine with Norco as my back up med. I am with Kaiser, and so grateful to be since every doctor, test, hospitalization, and medication are all with them and in their computer system. I have used the same pharmacy for years because I thought I had to since my doctor usually sent his assistant downstairs with my refill script. Now that I am no working in that city, I wanted to switch to my closest Kaiser, but I thought it would bring with it huge delays and mixups resulting in me having to go without medication until it was straightened out, so I just kept making the drive to the same pharmacy. With this change to computer orders though, I am now able to have him signify that facility and I pick them up with no hassles. I love it. But if they try to mess with my prescriptions and deny me what allows me to get out of bed and move each day, I don't know what I will do. Like some of you posted, I have been suicidal over the pain level before. And then being given enough pills to get me through a day, but leave me with the roller coaster pain levels as each pill wore off and the next one kicked in was not a great bargain either. The anxiety while feeling that pain increase and the irrational feeling that the next pill might not lessen it was horrible to deal with multiple times a day. When I was put on the time released morphine, I cried a bit. One pill lasted 12 whole hours. No more watching the clock to see when it was ok to take the next pill and no more having to take a pill in uncomfortable situations like meetings or when teaching a group of people. It gave me my life back to the closest it has been to normal since my spinal surgery that started this situation. I understand and applaud the attempts to clean up the street addiction issues, but I hope this does not significantly impact those of us who rely on these med's and who willingly show up for the required blood tests and appointments. If we are compliant and careful with how we go about getting the meds, like going to the same pharmacy, scheduling vacations around when we can get refills at home first, and being cautious and careful not to mishandle the responsibility of being on these pain control pills, then I pray they leave us alone with what has been working and inabling us to be productive people again. Or the government is going to have to answer to a lot of pretty pissed off people. I know I am not a very nice person when in full pain, and I don't have much consideration for anyone else, nor much control over what I say and do. Do they really want us out in society like that? ?
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pudgygroundhog
Pearl Clutcher
Posts: 4,648
Location: The Grand Canyon
Jun 25, 2014 20:18:39 GMT
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Post by pudgygroundhog on Apr 19, 2016 4:04:52 GMT
me: I'm so sorry. I didn't know you went through this. I DO understand your pain. I've been in similar pain since 1974, every single day. I have no idea why I'm not depressed, suicidal or anxious over it. My pain mgmt team has a psychiatrist associated with their team. I could speak to her if I become despondent over my pain. I carry her card but I'm not at that point (again, don't know why!). I thought I'd have bleeding ulcers when I went in for a colonscopy and endoscopy, but it showed that I had diverticulosis and GERD and COPD (all erosion). I'm on mega-doses of meds to coat my throat, stomach and colon. Lovely........ I try to watch my diet and be reasonable. I've been to hospitals for other things and they can't give me my regular pain meds, so I leave with vomit-worthy pain (unless I sneak my own meds in!). It's crazy. I had a hysterectomy and wound up in the ICU because my pulse was at 120, with the vomiting, shaking, etc....... Same scenario, so I know where you're at, unfortunately. I'm so sorry. As for massage, it's funny that when I get my hair done, I'm pain-free!!! If I had a head massage (like washing your hair) daily, I might be okay!! No one approves it. That's interesting & I should bring it up to my pain mgmt team to see if some kind of massage therapy would help. I doubt it would be covered too! Prayers to you to stay healthy or stay stable! I finished surgery a year ago and am not nearly done, but I quit. I can't go through more surgeries and years of more recovery. I"m too old for that! Thanks! I didn't struggle with depression before the pain came. I did, however, struggle with anxiety. It's not fun but I am not suicidal right now. It's just hard for those not experiencing it to understand and for that I am grateful. I would never want anyone to hurt. I am glad they got your pain down. It's frustrating, too, that insurance will cover so many medications but not therapies that actually work. My insurance covers all of my pain meds but nor physical therapy or other treatments that work towards healing it. It's interesting you mention that because I just read Dreamland (excellent book) about the opiate epidemic and it mentioned a contributing factor was insurance companies unwillingness to pay for more comprehensive pain management versus prescriptions. One of my friends is a nurse and is currently reading the book and she said that is changing - mainly because insurance companies are finding it's pretty expensive to pay for addiction, so now they are more willing to pay for pain management. In general she said she is getting a lot of emails with various articles/info about opioids, the changing regulations, etc. and it's definitely a hot topic now. I'm sorry for all of you that have to deal with chronic pain and I hope you can continue to get the help you need. Hopefully the regulations still allow for the right access for those in need, while trying to rein in some of the current problems.
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 18:25:00 GMT
pudgygroundhog: Thank you for caring. It's horrible how some doctors hand out serious meds like they're candy, get you hooked and then decide that it's too expensive to keep you on them and leave you hanging out to dry. In the instances where handing out the serious meds are NOT a necessity, THAT is what pisses the chronic/severe pain patients off because it makes everything harder for us. Kudos to your friend for writing a book about it. It's a two-fold issue: 1: That doctors have handed Rx's out inappropriately just to get kickbacks from Big Pharma, and 2: That the patients with REAL, serious and/or chronic pain are being made to jump thru more hoops just to get the pain meds that we NEED to function (not necessarily that we're hooked on them but that we need them to function thru our pain). I can tell you that it's not fun when I'm vomiting from my pain but have to be clear-headed enough to realize that I have to follow up on when to call for my Rx and get it filled, when to know how many days it's been since the last Rx, when to get a new written script, etc......... It's hard for anyone, muchless for people in pain to deal with it all.
Lexica: I don't know how the morphine works for you, but I'm happy it does. It barely touched my pain. I was on the 12 hour ones also, and when I took it and was left in vomit-worthy-pain, I knew it was a BIG mistake for me. It meant I had to stay in bed, waiting to ride out the 12 hours until I could try something else. Horrible way to live. I agree with you about how we have to fight for our meds, and how "mean" it makes us. I think we're more anxious that we won't have them to rely on and we KNOW we can't function, so it's pretty important. I was able (with much persuation!) to get my Fioricet with 2 refills on it!! I dont' know how it passed thru, but it has, for the past 9 months! Woohoo. It meant that I could go to my pain mgmt doctor once every 3 months vs. every month. It meant that I pay $40 to him every 3 months vs. $40/month. It's a big deal!! This time someone made a mistake and wrote the script with 3 refills vs. 2, so I'll see if it goes through. I"m shocked that I haven't gotten calls from my insurance company, but maybe this is the first step for them seeing that I do go regularly, I take the blood and urine tests regularly and I've been on the same basic pain med daily for years now. It makes life much easier. Now if we could find a perfect drug for my extreme pain days I'd be happy, but we keep testing different rescue meds out......... I wish you the best in your pain-world too!!
me: I'm glad you're okay right now, and we all know what to do if we're feeling more desperate or down because of our pain. Prayers to you. About the therapy component, it's funny how I was NEVER suggested to go even for massage therapy or anything like that. I will bring it up next time I go to my pain team, because I think there's something there. My son also is the best masseuse. He was looking into it as a career but chose a different path. If he's home when I'm in pain, I ask him to rub my head/neck before I take the meds, and it DOES help. It prolongs the time I need to take the meds at least. Insurance companies should really research and invest in these therapies to see if they could help us take less meds!
Hope everyone on this thread has a low-pain day!!! We should discuss this topic more to see commonalities and things that might give us all some help! I moderate a messageboard for my particular medical situation, and still, hardly anyone on that board has to resume to taking serious Rx's. Their situations are just plastic surgery and repairing damage, but not too much pain. I suppose a pain management messageboard would be helpful. At least I can help some people navigate their new lives with a serious loss like mine, but I don't have enough info from people in similar pain.
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Deleted
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 19:55:30 GMT
pudgygroundhog: Thank you for caring. It's horrible how some doctors hand out serious meds like they're candy, get you hooked and then decide that it's too expensive to keep you on them and leave you hanging out to dry. In the instances where handing out the serious meds are NOT a necessity, THAT is what pisses the chronic/severe pain patients off because it makes everything harder for us. Kudos to your friend for writing a book about it. It's a two-fold issue: 1: That doctors have handed Rx's out inappropriately just to get kickbacks from Big Pharma, and 2: That the patients with REAL, serious and/or chronic pain are being made to jump thru more hoops just to get the pain meds that we NEED to function (not necessarily that we're hooked on them but that we need them to function thru our pain). I can tell you that it's not fun when I'm vomiting from my pain but have to be clear-headed enough to realize that I have to follow up on when to call for my Rx and get it filled, when to know how many days it's been since the last Rx, when to get a new written script, etc......... It's hard for anyone, muchless for people in pain to deal with it all. Lexica: I don't know how the morphine works for you, but I'm happy it does. It barely touched my pain. I was on the 12 hour ones also, and when I took it and was left in vomit-worthy-pain, I knew it was a BIG mistake for me. It meant I had to stay in bed, waiting to ride out the 12 hours until I could try something else. Horrible way to live. I agree with you about how we have to fight for our meds, and how "mean" it makes us. I think we're more anxious that we won't have them to rely on and we KNOW we can't function, so it's pretty important. I was able (with much persuation!) to get my Fioricet with 2 refills on it!! I dont' know how it passed thru, but it has, for the past 9 months! Woohoo. It meant that I could go to my pain mgmt doctor once every 3 months vs. every month. It meant that I pay $40 to him every 3 months vs. $40/month. It's a big deal!! This time someone made a mistake and wrote the script with 3 refills vs. 2, so I'll see if it goes through. I"m shocked that I haven't gotten calls from my insurance company, but maybe this is the first step for them seeing that I do go regularly, I take the blood and urine tests regularly and I've been on the same basic pain med daily for years now. It makes life much easier. Now if we could find a perfect drug for my extreme pain days I'd be happy, but we keep testing different rescue meds out......... I wish you the best in your pain-world too!! me: I'm glad you're okay right now, and we all know what to do if we're feeling more desperate or down because of our pain. Prayers to you. About the therapy component, it's funny how I was NEVER suggested to go even for massage therapy or anything like that. I will bring it up next time I go to my pain team, because I think there's something there. My son also is the best masseuse. He was looking into it as a career but chose a different path. If he's home when I'm in pain, I ask him to rub my head/neck before I take the meds, and it DOES help. It prolongs the time I need to take the meds at least. Insurance companies should really research and invest in these therapies to see if they could help us take less meds! Hope everyone on this thread has a low-pain day!!! We should discuss this topic more to see commonalities and things that might give us all some help! I moderate a messageboard for my particular medical situation, and still, hardly anyone on that board has to resume to taking serious Rx's. Their situations are just plastic surgery and repairing damage, but not too much pain. I suppose a pain management messageboard would be helpful. At least I can help people navigate their new lives with a serious loss like mine, but I don't have enough info from people in similar pain. I definitely think both are needed. At least with massage I could reduce some of the pain. Myopractic care is amazing if you can find it. Sometimes Groupon has some deals. Myopractors do more stretching and spend as much time as a massage therapist does. I also had cranial/sacral work done a few years ago by a friend in school. I felt like I had a new neck. I have an appointment on the 27th. I am going to talk to my doctor about the changes and see what his experience has been. I will say whenever I have to go yo the ER I am sent home with scripts for pain meds that I just tear up.(I'm under a pain management contract) I tell them every time that I don't need them but they still give me one. That I would like to see stop. It's almost a rout action. It's almost always for percocet. When my pulse is so high in the ER or hospital, they do an EKG or in the hospital post surgery a CT scan to make sure I don't have a blood clot in my lungs. I do have fibromyalgia too which I think exasperates the pain. But there's such a stigma around it, I don't like telling doctors about it. I hope they do make headway in the treatment of chronic pain. Big hugs to all those dealing with it and I hope your pain levels stay low.
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 20:04:05 GMT
me: I've never even heard of Myopractic care! I'll check it out. Chances are they would be afraid to touch me once they hear that I've had so many surgeries and I've had so many plastic surgeries. I could tell them where it's safe to massage. I'd LOVE it!
I've never, ever gotten a script for anything stronger than what I have. After my hysterectomy, I got an Rx for Oxycodone, but after 1 dosage, I opted to stay on top of my headpain with those meds instead, as it was MUCH more painful. People in the ER here just give me a script for what I'm already on...... Makes no sense!
I didn't think of the blood clot idea. Now I'm scared! I'm also on estrogen, so that scares me too, but I'm healthy otherwise (don't even smoke). I agree about not wanting to tell doctors about your Fibro--when I mention my LONG story, it complicates everything. Ugh. Big hugs to you too--I'm having an icky pain day--not bad enough to be in bed, but bad enough not to accomplish anything thusfar. Sucks, but it could be worse! Have a good rest of your day!
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Post by mellyw on Apr 19, 2016 20:26:14 GMT
My DD works in the E.R, her advice to me if I have to go, take my current Vicodin prescription in it's original bottle with me. So far I've managed to avoid the E.R, knock on wood. I'm having heart issues so it's been a definite possibly recently.
I don't use a pain clinic, but my PCP is who prescribes me Vicodin, & I don't accept pain med's from any other source.
Bless my Dentist, but he always tries to give me something too. I'm all ready squirreling away pills for when I get my upper denture. Obviously I'll go thru them a little more then.
And there's the difference with those with true chronic pain. As other's have already mentioned, we've learned how to ration our pills & be grateful that we have Doctor's still willing to work with us.
ETA- I also do not allow Fibro to be put in my records, despite two different Rheumtologists diagnosis. Way too much stigma attatched to it. If I decide to go the medical marijuana route, I'll have it added then. Which is truly ironic, Fibro being a condition that qualifies you, but so many Doctors dismiss it (and you) when it's mentioned.
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Post by teri on Apr 19, 2016 20:53:53 GMT
I haven't had to fill a prescription in a long time. I just recently ran out of my pain meds. I go to a pain specialist and get the nerve ablations in my facet joints and SI joints. I'm wayyyy past due for it again. My Dr recently moved locations. I only take a pill when I just cannot stand the pain and I know I can go lay down for hours and sleep.
I cannot take tramadol because I take Lexapro.
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Post by Lexica on Apr 19, 2016 21:22:45 GMT
Lexica: I don't know how the morphine works for you, but I'm happy it does. It barely touched my pain. I was on the 12 hour ones also, and when I took it and was left in vomit-worthy-pain, I knew it was a BIG mistake for me. It meant I had to stay in bed, waiting to ride out the 12 hours until I could try something else. Horrible way to live. I agree with you about how we have to fight for our meds, and how "mean" it makes us. I think we're more anxious that we won't have them to rely on and we KNOW we can't function, so it's pretty important. I was able (with much persuation!) to get my Fioricet with 2 refills on it!! I dont' know how it passed thru, but it has, for the past 9 months! Woohoo. It meant that I could go to my pain mgmt doctor once every 3 months vs. every month. It meant that I pay $40 to him every 3 months vs. $40/month. It's a big deal!! This time someone made a mistake and wrote the script with 3 refills vs. 2, so I'll see if it goes through. I"m shocked that I haven't gotten calls from my insurance company, but maybe this is the first step for them seeing that I do go regularly, I take the blood and urine tests regularly and I've been on the same basic pain med daily for years now. It makes life much easier. Now if we could find a perfect drug for my extreme pain days I'd be happy, but we keep testing different rescue meds out......... I wish you the best in your pain-world too!! Hope everyone on this thread has a low-pain day!!! We should discuss this topic more to see commonalities and things that might give us all some help! I moderate a messageboard for my particular medical situation, and still, hardly anyone on that board has to resume to taking serious Rx's. Their situations are just plastic surgery and repairing damage, but not too much pain. I suppose a pain management messageboard would be helpful. At least I can help some people navigate their new lives with a serious loss like mine, but I don't have enough info from people in similar pain. I am happy you were able to get that extra refill on your Fioricet. Isn't it funny how little things like this make us happy and greatly relieved? I have had experiences where my meds were ready when I went to pick them up and other times where something went wrong and they are not there, no prescription can be located, and the worst one was when my doctor went on a 2-week vacation and forgot to leave my prescription with his nurse. The doctor covering for him wouldn't do it because he didn't know me. Never mind the fact that he has access to my records for the last 8 years and can see that I have been on morphine for the entire time. I understand they take a great risk in doing so, so I can't blame them, but at the time that I need them, I am not so understanding. When my doctor finally returned, I told him what happened and that I finally received them from the pain management doctor who I see more infrequently than I do my GP could write me. My doctor was very understanding and said he had no problem in writing my prescription for more than I actually need in a month to allow me to stockpile a bit for occasions like that when I cannot get my medication as usual! I was so surprised and so grateful to him for that! I got an extra 30 pills that I locked up and kept rotated with new pills each month. Over time, I depleted my small stash during mixups and delays, but I am grateful it was there to keep me sane while I waited for them to correct the problem. I now have a decent stockpile of Norco and Fioricet saved up to take the edge off if I cannot get the Morphine on time. You play such a game with putting in a refill, don't you? You need to order far enough in advance to make sure they come in before you have used up your last pill from the current prescription, but you cannot order too far in advance because that flags you as a drug seeker, trying to get a refill ahead of when you were due. It gets laughable. As an extra buffer for myself, I now keep a week's worth of each medication that I take in a separate container hidden in my room. I never use from the meds from that container, and just rotate them out every 3 months with fresh. I started this because there were a few times that I thought I had more pills in the main bottles that I keep locked up, and when I went to refill my compartment container that I use, I was just about out. I'm so sorry the morphine didn't help you at all. I am on the strongest dose they will prescribe at Kaiser, and I dread the day this is no longer working for me. I have done pretty well with it so far, and I am really hoping to never have to try something else. If there was something else time released, I would be open to it though. After I posted yesterday, I went to refill my medications container from the main bottles. I kept thinking that Fioricet was familiar to me for some reason. Sure enough, I have it too. The doctor put me on it for headaches/migraines and it really works well. Mine is a generic, so I have just always thought of it by the generic name, but yesterday, I read the label fully and saw that it is a generic for Fioricet. And its funny, as wonderful as they are for dealing with my headache pain, there is no way they are strong enough to handle my neck/back pain. It is interesting to me how different people respond to different drugs for sometimes the exact same problem. I have not heard of Myopractic care, but it sounds interesting. I do find that a TENS unit will give me a bit of relief if I don't use it too often. I save it for the times that I have to sit in the car for a lengthy trip. I really appreciate everyone being very open and sharing about their medications and experiences. It would be nice to have a post that we could keep going to discuss any changes in the law, tips that have helped you and may help another, and just generally being supportive to each other. Chronic pain, and as most of us have commented, having Fibromyalgia on top of that, tends to keep you a bit isolated and you do not talk openly about your issues for fear of boring others and being avoided. It would be nice to feel we could be more open to fellow sufferers on that post and not feel uncomfortable. Thoughts anyone?
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Deleted
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 21:45:07 GMT
Lexica: I have been a Pea for about 12 years or so, and I hardly ever get into detail about my chronic pain. I dance around the topic. It's been very private to me. I've msg'd people about it here, but only began to come out with my personal story and all that it entails. If we could help each other, that's GREAT! I agree with your idea that we should continue with this topic to keep it updated. It's helpful!
Now, about your last post to me........ My morphine sulfate is only 15 mg. Is that a low-dosage? I keep the bottle (I have about 50 pills in there) for an additional rescue med if nothing else is working. As far as you having a week's worth of backup meds... WOW!! Kudos to you! I did that for a few days' worth (some months they've given the refills to me 2 days early and I stash that amount...), but when I'm in severe pain and up 24 hours from it, I take the Fioricet 'round the clock (it's the only thing that works but I know I'm not supposed to exceed 6 pills/day). About refills... Not sure which State you live in, but here in FL, all doctors are gone come Friday afternoons!! There's no way of being in touch with them at all. So, I have to keep on top of the days of the week and when my refill can come in, just so that I don't fall short. You can't even get a partial refill here over the weekend, so you're left high and dry!!! It's crazy. I've tried calling the doctor's voicemail and I get some twerp covering for them (usually with a screaming kid in the background!) who knows nothing about my case, and sometimes calls in the refill incorrectly! You'd think they'd all have it somehow online, right? Uuhhh! Makes me miss living in NY, where the pharmacists are on top of things, the doctors can be reached 7 days a week and everyone's on the same page. Medical care is changing though........... About your Fioricet: Mine is the generic (I'm on Medicare), and it's the one with all 4 ingredients (butalb/cod/caff/apap). It's like gold to me! I could see it helping with other things than just headpain, but so far it's the #1 Rx that is effective for me. My main issue is that I have that bb lodged in my socket, and it presses on nerves, so if it's humid out, or rainy, I'm severly affected. If I have sinus issues, I'm down for the count. I've also had silicone beads (used to fill my socket) fall to the orbital floor---pretty painful these past 2 years!!! The surgeon was able to take some out that were pressing on my sinus nerves. He said, "Gosh, those had to be pretty painful, huh?" Gee, yeah, ya think??? I think that more are bound to fall down there due to gravity. It sucks......... but I'm alive. Thanks for your words, your ideas and the support we could give each other with our medical woes on this page! I wish you a good day!
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Post by Deleted on Apr 19, 2016 21:53:17 GMT
I haven't had to fill a prescription in a long time. I just recently ran out of my pain meds. I go to a pain specialist and get the nerve ablations in my facet joints and SI joints. I'm wayyyy past due for it again. My Dr recently moved locations. I only take a pill when I just cannot stand the pain and I know I can go lay down for hours and sleep. I cannot take tramadol because I take Lexapro. Teri: Your case sounds so interesting. I guess we all sound interesting to doctors and some specialists! How does the doctor get to the nerves in your face joints??? Mine is more invasive (quick background: I was shot in the eye, close range, with a bb gun in 1974, lost the eye and some of my face, had 33 surgeries....... The pain comes from scar tissue in my socket, as well as that damned bb that's lodged deeply in my socket, resting on some nerves. Also, I have some silicone beads (implant) that have fallen to the orbital floor (painful) and some were on my sinus nerve. I'm sure more have since headed that way--I know the type of pain, but the surgery to remove a few took over a year for me to heal!). I was the first one in the U.S. to get the silicone beads as an implant b/c I rejected everything else, so not too many surgeons know what to do with me. This last surgeon didn't even finish up my case and he just moved to Duke University. Wonderful............ I had about 3 more surgeries he could have done to finish me, but I opted out. I can't revolve my life around recovery. I try to get by.......... I'm on a daily pain Rx and a rescue Rx for my bedridden days. I'd love to hear other options of relieving my pain more permanently! Prayers to you that you have low-pain days. Those "cannot stand the pain days" sound like my average days, unfortunately!
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 22:00:16 GMT
My DD works in the E.R, her advice to me if I have to go, take my current Vicodin prescription in it's original bottle with me. So far I've managed to avoid the E.R, knock on wood. I'm having heart issues so it's been a definite possibly recently. I don't use a pain clinic, but my PCP is who prescribes me Vicodin, & I don't accept pain med's from any other source. Bless my Dentist, but he always tries to give me something too. I'm all ready squirreling away pills for when I get my upper denture. Obviously I'll go thru them a little more then. And there's the difference with those with true chronic pain. As other's have already mentioned, we've learned how to ration our pills & be grateful that we have Doctor's still willing to work with us. ETA- I also do not allow Fibro to be put in my records, despite two different Rheumtologists diagnosis. Way too much stigma attatched to it. If I decide to go the medical marijuana route, I'll have it added then. Which is truly ironic, Fibro being a condition that qualifies you, but so many Doctors dismiss it (and you) when it's mentioned. mellyw: Prayers to you. You brought up good points about bringing your Rx in the bottle! Another one to add to that is to ALWAYS keep the bottle with you or keep a copy of the script from the bottle (your pharmacist could print one up) or you could be arrested to carrying drugs. I know it's common down here in FL! I usually keep the little folded up print-out in a pillcase with my pills. I don't want to be robbed of my meds! If I go to the hospital, DH and I scoop all of our Rx's into a huge bag and bring them. It's easier that way! One more thing to add: I once went to a hospital b/c of stomach pain (turned out to be diverticulitis) and was lucky enough to remember bringing ALL of my pill bottles. The doctor on call first thought I was a drug seeker!! He saw some bottles of Percocet and other strong drugs that I barely used, and he verified that if I had been a seeker, I'd have used them or sold them. Lovely, but this is the way they have to think now.......... So I'm careful to bring EVERYTHING that's been prescribed to me within the previous 6 months or so, just so they could see it.
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 19, 2016 22:13:27 GMT
My DD works in the E.R, her advice to me if I have to go, take my current Vicodin prescription in it's original bottle with me. So far I've managed to avoid the E.R, knock on wood. I'm having heart issues so it's been a definite possibly recently. I don't use a pain clinic, but my PCP is who prescribes me Vicodin, & I don't accept pain med's from any other source. Bless my Dentist, but he always tries to give me something too. I'm all ready squirreling away pills for when I get my upper denture. Obviously I'll go thru them a little more then. And there's the difference with those with true chronic pain. As other's have already mentioned, we've learned how to ration our pills & be grateful that we have Doctor's still willing to work with us. ETA- I also do not allow Fibro to be put in my records, despite two different Rheumtologists diagnosis. Way too much stigma attatched to it. If I decide to go the medical marijuana route, I'll have it added then. Which is truly ironic, Fibro being a condition that qualifies you, but so many Doctors dismiss it (and you) when it's mentioned. mellyw: Prayers to you. You brought up good points about bringing your Rx in the bottle! Another one to add to that is to ALWAYS keep the bottle with you or keep a copy of the script from the bottle (your pharmacist could print one up) or you could be arrested to carrying drugs. I know it's common down here in FL! I usually keep the little folded up print-out in a pillcase with my pills. I don't want to be robbed of my meds! If I go to the hospital, DH and I scoop all of our Rx's into a huge bag and bring them. It's easier that way! One more thing to add: I once went to a hospital b/c of stomach pain (turned out to be diverticulitis) and was lucky enough to remember bringing ALL of my pill bottles. The doctor on call first thought I was a drug seeker!! He saw some bottles of Percocet and other strong drugs that I barely used, and he verified that if I had been a seeker, I'd have used them or sold them. Lovely, but this is the way they have to think now.......... So I'm careful to bring EVERYTHING that's been prescribed to me within the previous 6 months or so, just so they could see it. Isn't it crazy that it's like that? I understand doctors are skeptical. But it also damages those who have legitimate pain and can back it up. I also try to act like my pain isn't that bad. It's a coping mechanism where they can be poking me trying to get a vein which hurts, a lot when it has to be done 10 times, and yet I am trying to be pleasant because I don't want to make anyone else miserable. It's exhausting trying to keep that up. But I had a doctor when I was hospitalized not understand how much pain I was in. He wanted to take away the medications I was on. Then he came in and someone was applying oils to my back. He asked me why they were doing that. I said I had been in so much pain I was crying and my friend came to try to help with essential oils. I didn't get a lot of relief but ANY relief is something when you are in so much pain. He reinstated my pain meds right then. It's frustrating that it takes that much. I have no doubt the nurse probably said I was being cordial with them and I couldn't possibly be in that much pain. However, had they looked at my pulse at the time and blood pressure they could have seen for themselves. I really, really try not to pull others down with my pain. Internalizing the frustration and pain isn't that healthy either. I do feel for doctors. They have a lot on their plates for sure with risk of litigation and other things now. I know with pain management they did some mouth swabs and found that I had a low risk of addiction. I am not sure how they determined that. They also found that I metabolized narcotics faster but other groups of medications slower. I think there are safeguards put in place for reputable pain management doctors. I did have my medication stolen once but I had a police report that I brought in. Since it only happened once and hasn't since then I was grateful they filled it but I would have understood had they not.
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Post by mellyw on Apr 19, 2016 22:55:15 GMT
My DD works in the E.R, her advice to me if I have to go, take my current Vicodin prescription in it's original bottle with me. So far I've managed to avoid the E.R, knock on wood. I'm having heart issues so it's been a definite possibly recently. I don't use a pain clinic, but my PCP is who prescribes me Vicodin, & I don't accept pain med's from any other source. Bless my Dentist, but he always tries to give me something too. I'm all ready squirreling away pills for when I get my upper denture. Obviously I'll go thru them a little more then. And there's the difference with those with true chronic pain. As other's have already mentioned, we've learned how to ration our pills & be grateful that we have Doctor's still willing to work with us. ETA- I also do not allow Fibro to be put in my records, despite two different Rheumtologists diagnosis. Way too much stigma attatched to it. If I decide to go the medical marijuana route, I'll have it added then. Which is truly ironic, Fibro being a condition that qualifies you, but so many Doctors dismiss it (and you) when it's mentioned. mellyw: Prayers to you. You brought up good points about bringing your Rx in the bottle! Another one to add to that is to ALWAYS keep the bottle with you or keep a copy of the script from the bottle (your pharmacist could print one up) or you could be arrested to carrying drugs. I know it's common down here in FL! I usually keep the little folded up print-out in a pillcase with my pills. I don't want to be robbed of my meds! If I go to the hospital, DH and I scoop all of our Rx's into a huge bag and bring them. It's easier that way! One more thing to add: I once went to a hospital b/c of stomach pain (turned out to be diverticulitis) and was lucky enough to remember bringing ALL of my pill bottles. The doctor on call first thought I was a drug seeker!! He saw some bottles of Percocet and other strong drugs that I barely used, and he verified that if I had been a seeker, I'd have used them or sold them. Lovely, but this is the way they have to think now.......... So I'm careful to bring EVERYTHING that's been prescribed to me within the previous 6 months or so, just so they could see it. That's great advice. I don't carry the whole bottle when I'm out & about for obvious reasons. I will keep the little print out that comes with the script from now on in my purse.
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Post by SunnySmile on Apr 19, 2016 23:00:17 GMT
I know how you all feel. I'm in the same boat with Fibromyalgia. My PCP diagnosed me and put me on Lexipro years ago, but it did nothing for me but make me swell up with water and gain 25 pounds. So I try to make do with Rx ibuprofen and Tylenol. He will give me a script for Lortab once in a blue moon, but it's only for like 20 tabs. He wants me to go to pain management. My mom goes to pain management and it's a nightmare for her. He wants me to do physical therapy, and I did try that with no luck. I'm at my wits end, and now this. It's so easy to lose hope and want to just give up.
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Sept 29, 2024 22:33:29 GMT
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Post by Deleted on Apr 20, 2016 0:49:58 GMT
me: That's interesting about the addition factor. I've learned that any more of this medication isn't effective, so there's no reason to go over and above my script. HOWEVER, for those 24 hour pain days, an endless supply of my regular Rx would be great. My son loves to tease me and tell me I'm addicted. In part, that's true. I have gone thru times where I was short 2-5 days of meds b/c I overdid it or it was a weekend, and I began to suffer withdrawal. How horrible!! These were meds to just get by with the pain; not to get high! He keeps me on the straight and narrow because he was an addict. He feels badly for me when I'm in any withdrawal stage. I do wonder if I metabolize some drugs faster than other people. Does that mean I have the makings of an addict? My husband has an Rx for Xanax. In the middle of the night I'll take 1 or even 2 to sleep well. He weighs more than twice my weight and I wonder why his meds have the same effect on me? Weird...... At least I have doctors who are keeping a close watch on me! SunnySmile: Hugs and prayers to you. Why is your mom's pain mgmt doctor a nightmare? Maybe she needs to check out a new team? They're not all universally good. I went to one before this one, and I was actually scared. It was a bad neighborhood. The windows in the center all had stickers that said there were no drugs on the premises. I was scared to get my Rx's, to walk to my car with them. Most times they're faxed to my pharmacy, but sometimes I had them in hand. It's a scary thing, especially when you live in an area where there are tons of meth-heads. But to you, don't ever give up. I know the feeling: that if 1 more thing goes awry when you're in pain and dealing with SO much, you'll lose it, but, hang on........... and maybe things will improve. I'm awfully crabby and cynical. I'm acerbic and nasty sometimes (and impatient), but I never give up hope......
TO ALL OF US HERE, ENDURING CHRONIC PAIN: It's a very good message to know that we're in this together, and that it's a long, hard road sometimes, but we should try not to ever lose faith. My parents always taught me not to dwell on my own injuries, but to know that there were people out in the world dealing with much worse medical conditions, maybe life-threatening, and they endure it. I try to live with those thoughts in my head. Some days it's very tough. Hugs to everyone posting on here!
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Post by iteach3rdgrade on Apr 20, 2016 0:59:23 GMT
I don't know, it still seems very vague. If it's a long term patient, the doctor would know better than to prescribe the lowest possible dose. Couldn't they show the patient history and medical proof like MRI's? I can't see them getting in trouble. I do like that more states are doing away with paper and calling in the medication directly to the pharmacy. It doesn't make sense to me that my daughter's adderall prescription HAS to be on paper. I would be perfectly happy if it had to be called into the pharmacy. There are more people in my state who die from opiate addiction than die in a car accidents, so I'm okay with stricter laws. My cousin has had numerous injuries and does not heal like most people. He has a higher oxycontin prescription and he makes sure he always goes to the same pharmacy so the dosage is not questioned. I know someone who was arrested for calling in an rx pretending to be a doctor. They'll find a way.
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Post by mellyw on Apr 20, 2016 1:12:12 GMT
I'm curious about the States going to calling in scripts. When Vicodin moved class schedules by the Federal government a couple years ago, it could no longer be called in.
I have to physically pick up a paper script from my Doctors office & take it to the pharmacy. How are these states getting around federal law?
I'd love it if my script could be called into the pharmacy again.
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naby64
Drama Llama
Posts: 6,194
Jun 25, 2014 21:44:13 GMT
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Post by naby64 on Apr 20, 2016 2:40:05 GMT
I'm curious about the States going to calling in scripts. When Vicodin moved class schedules by the Federal government a couple years ago, it could no longer be called in. I have to physically pick up a paper script from my Doctors office & take it to the pharmacy. How are these states getting around federal law? I'd love it if my script could be called into the pharmacy again. I have Fibro and lower back issues. Right now, a major inflammation with discs and there is some major pain. Enough that for the first time in about 10 years that I am thinking surgery might finally be the way to go. Anyway, I see my rheumatologist every 6 months. He moved offices about a year and half ago and is now about an hour away from me. I had worried about my scripts since the new regulations went into effect. We have talked about how I only take my Vicodin when there is nothing else that will help. I did have a monthly script for 15 pills. Once this new thing went into effect, he wrote one for 60 tablets until the next visit. This has worked out as I don't ever use up that amount. He did tell me he does not want me hurting and I am to call if I ever need a refill. I haven't had to do this. I am trying to remember if I got a paper script with my last visit or if that one got taken care of by an e-script. All of my other meds were ordered by the nurse online before I left the office. With one refill, my DH took it in. When he went to pick it up, since it was 60 pills, he had to speak with a pharmacist. Luckliy it was a friend of ours and she just asked if everything was OK with me. He told her I had Fibro and she just immediately softened. I think she may have made a notation in the system so there would be no other issues.
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M in Carolina
Pearl Clutcher
Posts: 3,128
Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Apr 20, 2016 4:56:53 GMT
My pain management doctor already has more stringent rules than the Feds or state require, so I don't think I'll see any changes. He requires monthly appointments and urine tests. He also wrote Narcan auto-injector scripts for all his patients--accidental OD is the biggest concern for chronic pain patients. The injector is just like my epipen injector. You can be fine on the same amount of meds, and your liver goes wonky or another med you take could affect the way your liver enzymes work. That once happened to me when I took Ambien for the first time--turns out Ambien doesn't work for me.
I tried *everything* before going on opiates. My regular doctor sat me down and insisted that I go. I was getting really sick because the chronic pain was depressing my immune system and causing my heart arrythmia to get unmanageable.
Going to the pain management doctor was the best thing I did. I have quality of life.
I do want to try medical marijuana--it's supposed to help MS in a lot of different ways. There are a lot of marijuana edibles in different strains to help various issues.
I understand that these laws are needed because of addiction issues, but it's still really frustrating. Addiction isn't the same as dependence. Yes, I need my meds and will get really sick if I don't get them on time, but I'm not going to lie, cheat and steal to get what I need. There's a lot of different meds other than opiates that people get dependent on--if my dh were to stop taking his epilepsy med cold turkey, nasty things would happen to him. Same if I stopped my heart medication. Dealing with chronic pain is difficult enough without dealing with misinformation by people that don't personally understand. I'm not getting into discussions or arguments, but I just wanted to point this out for people and their families who are dealing with chronic pain and the stigma surrounding it--I know my family has freaked out in fear of addiction. When I explained all the safeguards that the doctor I chose had in place, they were able to understand my treatment are are finally relieved that I am getting the best care possible.
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Post by Lexica on Apr 20, 2016 14:59:52 GMT
I am really glad that those of you with chronic pain are amenable to keeping a post, maybe this post, running to exchange information and support. I think the majority of us don't talk about our chronic pain to our real life people for many reasons. For me, as I said, I don't want to bore people or make them uncomfortable. I mean, what do you say to someone who admits they are currently in agony and watching the clock until their next pill can offer relief? My good friends and a few neighbors know, but even they don't know the extent of my medications.
I also don't want to set myself up for a robbery by an addict who heard from someone who heard from someone that I have x or x in the house for my chronic pain. So I do like Mom said and I downplay the whole thing. There is nothing they can do or say to make it better anyway, so why burden them and possibly risk yourself? That is why I think it would be helpful to discuss it with other sufferers who will get it, sometimes to vent, other times to share important medical news, or that something you tried really worked well for you.
For me, it has been the Like my TENS unit. I didn't think for a second that it would be powerful enough to minimize my pain at all. I was so surprised and delighted that it works amazingly well. Any time I can find something like that that will help with the pain that isn't another narcotic pill to swallow, I'm thrilled. But a TENS unit loses efficacy if you use it too long or too often, so it isn't a product that solves all the problems, but another tool in your drawer to pull out when needed. For me, I have chosen to use it in the car because I have increased pain when sitting like that. And even though I have never felt "high" or buzzed from any of my pain pills, I feel uncomfortable downing a couple of Vicodin before getting on the freeway. The TENS unit lets me avoid that increased pain and doesn't impair any reflexes. Perfect! And now I am going to research on myopractic care to see if there is anything there for me.
Bergdorf Blonde, yes .15 of the time released morphine is the lowest dose you can get. I was started on that, but it wasn't effective and was quickly moved up to the next dose, and over the next 9 years, I am now at the highest that it comes in for chronic pain sufferers which is .60. I believe there are much higher doses given to cancer patients, but I am at the top of what Kaiser will prescribe to someone in my circumstances. I don't know what the next step would be, but I am going do my best to stay with the dose I am on and make the most out of the breakthrough pain meds. I hate the “let’s try a new medication” dance. Necessary, I know, but I still hate it.
Also, the week of backup medication that I keep has been accumulated over a span of 8 or 9 years. I don't get into it because having it gives me so much peace of mind. Just knowing that if there is a major issue with me picking up the next supply at the pharmacy, or in the event of an earthquake, tornado, or lengthy power outage due to terrorism, or some such emergency where I cannot get my medications in a normal fashion. I would highly recommend it to everyone, not just pain patients. My son and I both take Synthroid, and I have encouraged him to build a week's backup too. The thing you need to remember is to switch them out with fresh ones every 3 months or whenever your supply is replenished.
With you having had 33 surgeries to date, you would be a great one to discuss this with, and I would appreciate input from any other chronic pain patient that has needed surgery, have you had discussions with the anesthesiologist regarding putting you under? The last surgery I had was for my shattered elbow. The woman anesthesiologist came to talk to me and was reading my chart. She got very nervous and said she was not sure she was going to be able to keep me asleep for the procedure! She said it would be tough because giving me too much would stop my breathing and not enough and I would feel the procedure. I also have sleep apnea and had brought my machine with me as instructed. I told her to slap that thing on me if I stopped breathing and keep me out! She scared the hell out of me! I know it is difficult when someone like us has a high tolerance of pain medication, but she could have spoken to me more professionally. Surely I was not the first chronic pain patient to ever have surgery! By the time she finished talking to me, I needed a Valium because I couldn’t calm my system down fast enough.
Fortunately, she did not do my procedure, another anesthesiologist did. I think she begged off. The replacement doctor didn’t say a word to me about it. He put the mask on my chest in front of my face and air started coming out. They began talking amongst theirselves and I commented on what the were discussing. They were all surprised that I was still awake and the doctor just increased whatever was needed to put me out.
Have you, with all your multiple surgeries, experienced this? Or has anyone else been told how much more difficult we make anesthesia because of our drug tolerance? It makes me afraid to ever need another procedure of some type.
I have other questions and comments, but this is already book length, so I will ask later.
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Post by teri on Apr 20, 2016 17:23:18 GMT
I haven't had to fill a prescription in a long time. I just recently ran out of my pain meds. I go to a pain specialist and get the nerve ablations in my facet joints and SI joints. I'm wayyyy past due for it again. My Dr recently moved locations. I only take a pill when I just cannot stand the pain and I know I can go lay down for hours and sleep. I cannot take tramadol because I take Lexapro. Teri: Your case sounds so interesting. I guess we all sound interesting to doctors and some specialists! How does the doctor get to the nerves in your face joints??? Mine is more invasive (quick background: I was shot in the eye, close range, with a bb gun in 1974, lost the eye and some of my face, had 33 surgeries....... The pain comes from scar tissue in my socket, as well as that damned bb that's lodged deeply in my socket, resting on some nerves. Also, I have some silicone beads (implant) that have fallen to the orbital floor (painful) and some were on my sinus nerve. I'm sure more have since headed that way--I know the type of pain, but the surgery to remove a few took over a year for me to heal!). I was the first one in the U.S. to get the silicone beads as an implant b/c I rejected everything else, so not too many surgeons know what to do with me. This last surgeon didn't even finish up my case and he just moved to Duke University. Wonderful............ I had about 3 more surgeries he could have done to finish me, but I opted out. I can't revolve my life around recovery. I try to get by.......... I'm on a daily pain Rx and a rescue Rx for my bedridden days. I'd love to hear other options of relieving my pain more permanently! Prayers to you that you have low-pain days. Those "cannot stand the pain days" sound like my average days, unfortunately! it's facet joints in my back. I am put under then they guide a needle under fluorescopy into the joints then the nerves are burned. It just makes me sore for a few days afterwards. I do have a terrible TMJ flareup right now. I had to get a night guard for sleeping. It has helped some. Some days I can barely get my mouth open to brush my teeth
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M in Carolina
Pearl Clutcher
Posts: 3,128
Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Apr 20, 2016 17:23:37 GMT
Lexica, I have had a couple of issues with anesthesia. My heart issue--a SVT tachycardia, isn't super serious--unless something happens that pops me into an arrhythmia that has to be converted (normal too hot weather/chronic pain/exercise) Sometimes I also have PVCs, but the anesthesiologists don't worry about it. The anesthesiologists do keep an eye on my heart. I had to have a lot of conscious sedation for radiology tests that year that I had acute pancreatitis 15 times. The flushing of the drainage tube, etc. was painful, so they gave me versed and sometime also did tests like liver biopsies and putting dyes through my liver and bile duct tree to see what was going one. I woke up during one of these tests. They also give me pain meds, so I was ok--just groggy. They told me I wasn't really awake and wouldn't remember this afterwards. I told them to remember that I have a cat with the weird name Macavity--from the Cats musical. (we were listening to this a lot when he snuck into our lives) Afterwards I look around and ask if they remember me talking about my cat. You could hear a pin drop. They gave me more versed the next time. I would do the tests conscious if possible. I didn't want to get to where they couldn't put me under without having to schedule an anesthesiologist instead of just having a nurse anesthesiologist that was with the radiology department--my radiologist was in the room doing the test and guided the nurse anes on giving me more. I did have a problem with the anesthesia meds I got on the 2nd to last ERCP--I woke up in a lot of pain and was in pain all over for a couple of days. I felt like I'd run 100 marathons and been drug behind a truck. The last ERCP was at a different hospital--UNC, by the specialist that I saw at Mayo (he moved here!) So the anesthesiologist and I talked about what happened, and he figured out what the problem was, and I had no issues. It wasn't the propofol, it was something else. It's in my chart. As far as "waking up"--there are some surgeries with conscious sedation where you can drift in and out, but it isn't like being wide awake feeling everything like waking up during heart surgery. For major surgery, they put leads on your head that measure brain waves, so they can tell if you start to wake up. I had an emergency surgery to remove my ovary that had scarred itself to my abdominal wall, was full of cysts and bleeding. Part of the surgery required the surgeon to poke places in my abdomen and ask if they hurt. They woke me up a bit, but not like I felt everything. They said I yelled ow, cut it out" (it meaning the $#%@#% ovary) and went back to sleep. The anesthesiologists have meds to put you under if you wake up. If you're worried, you could have a safe word--if I'm really awake, I'll say "pineapple" or "you're the worst anesthesiologist ever and I'm not paying you" I do have a tip for you and others who have been on a med for a long time and aren't getting a lot of relief. Tolerance happens when your liver enzymes get better at processing the med--the more they process and break down, the less there is to enter your bloodstream and go to your brain. Sometimes switching meds really helps because your enzymes don't know how to break that med up as well. Like I take Opana ER. (I have a morphine/fentanyl allergy, so I can only take certain meds) There are other long acting pain meds, and switching them around when your dose gets really high can sometimes better control your pain. You can try. For short term relief, I take oxycodone. I used to take dilaudid suppositories (the pills do nothing for me). They weren't working as well, so we switched. The enzymes working different ways helps explain why when you first get to the hospital, the doses of Dilaudid, etc. work really well, but then the following doses don't. (IV drugs work faster/better because they cross the blood/brain barrier faster and doesn't get processed in the liver the same as meds taken by mouth. I don't talk to a lot of people about my chronic pain, either. I've shared some on this board to help encourage others/commiserate. There's a stigma about taking pain meds--we're all "addicts". We're not strong enough to just "buck up, buttercup" and deal with it, so we have to take meds and not work/do what we want. I think this is a big reason why people refuse to get treatment for so long. It's like there's a prize for not ever taking drugs or admitting that you need some help with your chronic issues. I've talked to so many people that were like that. The ones I've talked to in the pain management office say they wish they had gone to see a pain control doctor sooner. Sometimes you have to go to another pain management doctor if the one you have isn't helping. They all work differently and specialize in different things. I once left a fibromyalgia pain doctor because he was giving too much medicine! I think it was a pill mill.
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Post by shevy on Apr 20, 2016 19:19:34 GMT
I'm currently in the situation where I've been on the same dose of pain meds for 15 years. My pain has increased over the years and I've documented it and asked for an increase in meds or other solutions from my doctor. I've tried all the things that she's given me. And still no increase in meds. There are moments and days where I would do anything to make the pain go away. ANYTHING. At the same time I don't want to be seen as a drug seeker. It's important to me not to be seen like that at all. But I don't know how to live with the chronic daily pain and not be seen as a drug seeker at this point.
I am on a low dose of Tylenol 3. I'm currently trying Tramadol for breakthrough pain and it does nothing. I go back in a week and will likely get something else to try instead of increasing the Tylenol 3. I'll try it all, but would kill for just 1 pain free day.
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