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Post by Lexica on Apr 20, 2016 20:18:23 GMT
M in Carolina, switching to another medication that is also time released, but not increasing the dosage is totally something I would consider. As long as the drug did not harm my liver or kidneys. My doctor told me the morphine does not damage organs, which is why I agreed to go on it. Vicodin/Norco can damage these organs over time because of the acetaminophen in them. If I get to the point that I cannot handle my current cocktail, I will ask him about this possibility. Shevy, no one should be living in severe pain. No one. I understand at times we need to balance the pain level with the side effects of the medication and make decisions based on that, but it sounds like you have developed a tolerance for your current medication after 15 years and need something different. Not necessarily stronger, but different. Maybe what M in Carolina suggested would work for you. Do you think your doctor would be agreeable to trying a different medication, but not increasing the dosage so you can hopefully find something that will work for you? Perhaps your doctor is unwilling to increase the dosage of the Tylenol 3 because of the potential liver damage. That would be enough to scare me off it. I asked to be switched from Vicodin to Norco because I read that it has less acetaminophen in it. I know the acetaminophen is what helps assists the hydrocodone to work, but knowing I will be on these the rest of my life, I would rather deal with a pain level that is not quite as reduced than deal with organ damage. The doctor told me it would be a smudge less effective on the pain, but I honestly haven't noticed much difference between the two. Although I switched years ago and may just not remember. Since Tylenol 3 combines codeine and acetaminophen, and Norco contains hydrocodone and acetaminophen, maybe your doctor would consider a switch, as long as the new one isn't radically stronger. I admit I am very limited in my knowledge of these medications, I just say yes, that worked, or no, find something else, so your doctor or pharmacist would be better to have this discussion with. All I did was look at a web page that described the two after M in Carolina's wonderful suggestion of switching kinds instead of increasing dose. www.healthline.com/health/pain-relief/codeine-vs-hydrocodone#Overview1Maybe read up on them and then present it as an option to your doctor. If it works, awesome, if it doesn't, try something else. I like the idea of a different medication instead of increasing the dosage of the one you are on. Do you notice the theme running through most of our posts? We don't want to be considered drug seekers, yet we owe it to ourselves to speak up if a pain med isn't cutting it. I don't think any of us want more opiate than the amount that will do the job. I hope you get some relief, shevy.
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Post by refugeepea on Apr 20, 2016 20:28:30 GMT
I know someone who was arrested for calling in an rx pretending to be a doctor. They'll find a way. True! The things I don't think about! I think it's odd it's harder to get adderall than pain killers!
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M in Carolina
Pearl Clutcher
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Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Apr 20, 2016 21:31:17 GMT
Shevy, you need to find another doctor, asap! I would also be concerned about all that tylenol. I know that tylenol just paid for a big pr marketing campaign using Susan Sarandon's voice about how "safe" it is, but it really isn't safe. It's easy to use too much (like using multiple cold/flu products and not realizing that they all contain acetaminophen) Also using it long term isn't good for your organs.
Is your doctor a pain management doctor? Because there's more drugs out there than tramadol and tylenol 3. The DEA is cracking down on doctors other than pain specialists writing these meds. I didn't think I needed a pain control doctor when I went either--my pain wasn't "that bad". Until it was finally controlled. I didn't realize how much pain I was really in.
Lexica, because of my non-alcoholic liver cirrhosis, I don't take any tylenol. Oxycontin and dilaudid both comes in low doses that would be equivalent to percocet. I don't know if there's anything lower than that--there has to be--there are a lot of people with acetaminophen allergies.
I've been a patient of a pain doctor for over 10 years and have no bad side effects. I feel better, have a better immune system and can deal with my problems better. So everything is positive.
One nice thing about the pain control doctors--they believed me. I didn't feel like a drug seeker. They see a lot of pain and know it when they see it. Plus the drug tests, etc. weed out the fakes. Which isn't an issue if you don't sell your meds or take something other than what they give you.
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Post by shevy on Apr 20, 2016 21:41:14 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. I'm on Lexapro also, but my doctor told me Tramadol was my choice at this point. So I'm taking it and watching for serotonin issues.
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Post by Lexica on Apr 20, 2016 21:44:43 GMT
With the topic of pain medication on my mind today, I am sitting here wondering if others of you have friends like one of mine who one day claimed he was envious of my legitimate ability to get Vicodin. He actually said envious. I would gladly trade places to be pain free again.
He was very surprised to hear that I have never, ever felt any buzz or fun feelings from any of the meds I take. And there is never any temptation to take "just one more" to see if you can get that buzz, because you know darned well what life will be like for you on the day you run out of pills and go into major pain because you wasted one prior to that time looking for a buzz.
He also asked if I would be willing to "give him a couple of Vicodin" to take with him to a party he was attending over the weekend. Apparently drinking with a Vicodin feels really good? I don't know because I don't drink anymore. I have probably had 3 glasses of wine, spread over 8 years time, since being on these things. And when I knew I was going to have the wine, I took only half a Norco and much earlier than usual to let it pretty much wear off before I drank. I do miss a good glass of Merlot! But if that is my biggest loss, I'm doing just fine.
Anyway, he asked me for a couple of pills. I looked him straight in the face and asked him what he expected me to do on the days I was in pain, but didn't have anything to dull it because I had given it to him? They don't understand it at all. I told him I adored him, he is one of my best friends, but I don't like him enough to be in that kind of pain in exchange for his night of pleasure. He felt awful because he truly hadn't thought of it that way. It was just, "Hey, she has a huge bottle; she won't miss a couple." So I had to let him know just what would happen to me if I gave up my daily dose for him. He was embarrassed and sincerely sorry. People just do not understand chronic pain. And I don't blame them at all. If you don't deal with it, you don't understand it. And neither did I prior to getting it.
Have you had someone ask for any of your pain meds, either for the fun of it (?) or because they seriously have some temporarily really painful thing going on?
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Post by shevy on Apr 20, 2016 21:50:51 GMT
Shevy, you need to find another doctor, asap! I would also be concerned about all that tylenol. I know that tylenol just paid for a big pr marketing campaign using Susan Sarandon's voice about how "safe" it is, but it really isn't safe. It's easy to use too much (like using multiple cold/flu products and not realizing that they all contain acetaminophen) Also using it long term isn't good for your organs. Is your doctor a pain management doctor? Because there's more drugs out there than tramadol and tylenol 3. The DEA is cracking down on doctors other than pain specialists writing these meds. I didn't think I needed a pain control doctor when I went either--my pain wasn't "that bad". Until it was finally controlled. I didn't realize how much pain I was really in. I have frequent testing done to make sure that it's not having adverse effects on my organs. I was at a pain management dr several times over the years. And when I get stable, then they transfer me back to my regular GP for monitoring. I'm due to go back, but at the moment I have to have another surgery on my TMJ and I'm in the midst of doctors figuring that out.
I also have to admit, that I have depression & panic. So I have psychiatrist, therapist, regular GP, TMJ doctor, TMJ surgeons, and plastic surgeon from my mastectomy that I need a revision on. Adding another doctor to see monthly is overwhelming. And none of them seem to talk to each other about medications. They tell me to tell the other one blah blah blah. When I do, the new one tells me to tell the previous one they're wrong.
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Deleted
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 20, 2016 22:00:04 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. mellyw: Here in FL, my scripts are faxed to my phrmacy while I'm at the pain mgmt doctor's office for an appt (every 3 mos). I know that when I began seeing him (2 years ago, I think), I needed a new script each month by him and he'd fax it to the pharmacy. They said it's even safer than hand-carrying it because it could get stolen or misplaced, and many clients try to ask for a duplicate. Then I realized that I could get 1 script with 2 refills on it, which has been a blessing. One time they made the mistake of ordering 1 script with NO refills, and my pharmacist checked back to my records and saw that that must have been in error and got the next 2 months faxed by the doctor (they needed the date of my next appt with him though!). I also know that my husband's Xanax can be called in, although it's controlled but not an opiod.......
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Post by Deleted on Apr 20, 2016 23:03:06 GMT
Lexica: I might have to keep coming back to reply to get all of the posts answered, but let me address this one post of yours (I wish we could post directly under the post we're referring to, to make it easier!): "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." ANSWER: THANK YOU for that response. It was ineffective for me and even at a high dosage, I doubt it would be effective for my type of pain. It's a hit or miss. Good to know that mine began at the lowest dosage though-thank you! " I hate the “let’s try a new medication” dance. Necessary, I know, but I still hate it." ANSWER: YES! Me too!! What's worse is that no doctors here have any idea about my issues. They only deal with back/neck issues, so it's tough. I hate to waste 4 hours or more waiting to try another Rx because that one didn't work, but in my case, the longer you wait, the more quickly it escaltes into bed-ridden stage. "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." ANSWER: Thank you for this. I'm on Synthroid to (another genetic issue handed down to me!). Never thought of saving up on this too. I guess I should stock up on ALL of my meds if I could. I just found out that without my Ranitidine, I could barely breathe, lift my arms up or function. It coats my stomach and throat. I have NO idea why I'd have bad pain if I didn't eat anything spicy or take anything acidic that would eat away at my stomach, so I realized that this Rx is soooooooooo very needed for me. Another sad step of overusing aspirin for years and having to deal with the result of that..... "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." ANSWER: Awe, I'm sorry for that! Actually, this was my SECOND surgery since being put on the Fioricet. I took OTC aspirin for 40 years before that. I was more worried about bleeding out! My Uncle (**not to brag!**) is a very famous anesthesiologist who also worked in cardiology--he was on 60 minutes and has made many discoveries and butted heads with Big Pharma to make it known. I'm proud of him. He found my initial oculoplastic surgeon and has counseled me through every step. I always had issues with anesthesia because I weighed less than 80 lbs during that time (normal for me--I'm barely 5'), so I'd throw up after and feel sick. NOW, as far as the pain meds + anesthesia: 3 years ago I had a hysterectomy and I had to stop my Fioricet 7 days prior to the surgery. I couldn't do it, so I stopped it 3 days prior. That was the best I could do. The anesthesiologist was aware and my surgery was about 4-5 hours. Afterward I DID wind up in the ICU with crazy heart issues and I felt like I was passing out, etc........... I was in the ICU overnight just to be monitored, but finally was okay. NEVER thought about that until you just said it, but I wonder if that was a contributing factor--that they gave me too much anesthesia. Fast-forward to March 2015 with my last (eye) surgery: This was done as an outpatient, and it was supposed to be pretty quick (2 hours or so). I spoke with the anesthesiologist and I did stop my pain meds 3 days prior (again), so he knew this. My weight is still pretty good so maybe that was in my favor? I'm not sure. But this surgery was the easiest as far as the anesthesiology. I didn't get sick and I was able to get up and walk out after recovering for a few hours. I hope that answers your question. I'm 100% honest with the anesthesiologist and ALWAYS want to speak to them before surgery to go over every detail. I like to tell them who my Uncle is and they give a little bit of better treatment........ If you stop your pain meds a few days before the surgery, you should sleep through it. I have had ONE surgery where they did it as local anesthetia vs. being knocked out because it was so close to my previous surgery. WHAT.A.MISTAKE!!! I have nightmares about that one! It was as though I saw everything going on but I could voice my feelings/anxiety/pain. It was HORRIBLE and I'd never do it again!!!!!!!! What goes on during a surgery is downright barbaric. We all shouldn't know about it! "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." ANSWER: YES, it always takes me a little longer to get knocked out, even considering how small I am. I'm not totally out until after I begin hearing them prepping when they THINK you're out. Yup..... but then I try to talk myself into focusing on falling asleep and it's been working. Takes a lot of work! I think as long as you have a very experienced anesthesiologist, you'll be okay. Heck, 33 surgeries later, I'm okay. The one where I wound up in the ICU scared me, and I'm just about to join a class-action lawsuit about that whole surgery (it was a scam--they sold me something that was horrible!!), but if I needed another surgery, I'd do it. I hope I answered your questions. I'll look and check the rest of this thread now............
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Deleted
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 20, 2016 23:12:44 GMT
teri: "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". ANSWER: I'm so sorry about your pain. I can't understand how a dentist told me that I had TMJ when I just had issues with the back of my jaw sometimes, some tingling and minor issues. Can't compare to what you go through. As far as what you said about burning the nerves, that is SOOOO interesting to me and I'm wondering if I haven't met the best surgeon down here would would even think of doing something like that. I think mine has to be done under anesthesia because it takes a while to physically get to the nerves involved and then it takes quite a while to get thru all of the scar tissue bundled up around each tiny silicone bead that's pressed on my sinus nerves. Sounds hopeful to have a procedure such as yours though! I'm glad you found something to at least work for the time being. We all go through so much just to have some lower-pain periods, huh? Hugs and prayers to you.
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Deleted
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 20, 2016 23:34:21 GMT
M in Carolina: " 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. "
ANSWER: THANK YOU! Well said. I was a wild child my whole 13 years previous to my horrible accident. I even had nearly an entire pencil almost right through my thigh and I barely felt it. WILD! Just energetic and nuts! When this accident happened, I was told that it shouldn't be too much pain, and to just "take an aspirin" when it hurt. Well, it hurt every day! I used to tell my parents but this was such a different case because it was in my head/socket--they couldn't see what pain I was in unless I was vomiting or screaming from the pain. I was always encouraged to shake it off and pretend I was "normal", so I did! Not until 2008 did I put it together that I was actually disabled and all signs pointed to it getting worse and worse, so I applied for SS disability (won on the first try, by myself!). I don't like to admit what's "wrong" with me to anybody. I tell who NEEDS to be told. This doesn't get discussed normally. I began the Rx route in 2002 and still tried to take the least bit I could, and even then I went back to aspirin b/c it was more socially acceptable. I guess if people knew I was taking up to 20 aspirin a day, then they'd realize I was in BIG trouble. I'm a huge believer in helping other people either suffering from the loss of an eye/sight or suffering in pain. Then I'll jump in and tell my story. I also share it when I hear about people allowing their children to use bb guns as if they're fine and it's all hype. I can tell you for a fact that there are hundreds more like me, suffering for the rest of their lives because of that STUPID weapon! At least I can help families navigate through the confusion via my moderating on my website.
Regarding being on pain meds: It's still something to hide and be ashamed of. I don't want to seem like a "seeker". While it's as necessary as taking insulin, it's still hidden. I don't want people thinking I'm taking it for a joyride. I take it all very seriously. It's a shame that so many people ruined it for the people in SERIOUS, real pain. I wish we could all wear a bracelet that states that we're taking the meds for a real reason. Then again, all I want to do is to blend in and try not to be in too much pain!
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Deleted
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 20, 2016 23:46:00 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. shevy: Have they ever suggested tylenol 4?? (That's Fioricet: butalb/codeine/caffeine/apap). I'm on 6 pills/day, which is the MOST any insurance company would approve (as far as what I've been told). I had to FIGHT them for this dosage alone. These pills normally make my head/brain pain go from a 9 every morning to a 4 or thereso. Maybe it would help. I know that initially the protocol was to take 1 pill and if it wasn't effective after 2 hours, you could take another, but always try with just 1. Well, 1 NEVER, EVER worked for me. 2 pills does work. It doesn't work in some circumstances, but for the most part it's my main med of choice for me. DON'T BE CONCERNED with being seen as a "drug seeker". If you have true chronic pain, then you are entitled to have help in finding the most effective meds for you!!!! We ARE drug seekers when our meds don't work and then we're seeking other meds to accomodate us. The pain mgmt team's JOB is to get you on the right meds and to be at the lowest dosage possible but have it be effective. YOU HAVE THAT RIGHT. I do hope you'll keep researching, taking notes, asking questions and trying to find the right meds for you! Good luck!! (I'm a persistent pain in the ass!! I'm pushy and I'm proactive. I come into the doctor's offices with my briefcase, with files and notes. They know I'm not a seeker, and I'm sure they know you're not.) Someone else here said it perfectly: that we are dependent but not addicts.
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Post by Deleted on Apr 21, 2016 0:03:44 GMT
OKAY, I'm all caught up thusfar, but I have a few more posts to answer here.........
*Concerning acetaminophen overdose or overuse: I suppose that's why I'm only allowed to be on 6 pills of Fioricet (tylenol 4) per day. If I need rescue meds beyond that, they don't include acetaminophen. I do get blood/urine tests every 3 months, so after reading all of this, I'm hoping they are checking my liver and everything! I'd love to be on something without the acetaminophen, but it's effective and the least damaging right now. I could have destroyed my stomach or bled out taking up to 20 aspirin per day!
*Lexica: I can relate about the friend asking for an extra pill or 2. I actually gave 2 to a friend of mine who was in severe neck pain. He took 1 and saved 1, but that left me short and it's no joke. I'll never do it again. I now get my 180 pills and immediately put them into a 31 day pill case and divide them up so there's no question about how many pills I have in a day. They're not for fun. As far as drinking--gosh, you're right!!!!!!!! I virtually stopped drinking completely! I'm realizing that I'm making healthier choices as far as diet and everything. No more red wine, margaritas, champagne, casual drinking. I only have a tiny sip if it's an occasion. Maybe it's because my liver has been effected? I'm not sure. I just know that it doesn't agree with me any more, and part of me does get sad when I see friends or even people in movies/tv casually drinking because it looks do damned good!!! Oh well... I'm thinner and am keeping my weight off easier. HEALTHY CHOICES. We have to make them even more than the average person because we are damaging our bodies by taking meds. I only drink water............
*Shevy: I hope you took everyone's words into consideration and you get the RIGHT meds for you and the right doctors. You deserve that much.
Hugs to everyone else!!
*As for me........... Crappy day with reality. I do Nanny work here and there to basically pay for my co-pays, etc... Well, I lost my last job 2 weeks ago and I'm looking for another one. In the meantime, I had to pay my co-pays on my meds, and just realized how short I am with my budget. Trying not to worry, but, how sad is that when we have to worry about paying for meds we need or a doctor we NEED to see??? Grrrrrrrrrrr!
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M in Carolina
Pearl Clutcher
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Jun 29, 2014 12:11:41 GMT
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Post by M in Carolina on Apr 21, 2016 3:04:10 GMT
I can't remember who had the TENS unit--Lexica? You said that it wasn't as effective if you kept using it...
I have an INTERSTIM, and implantable TENS unit, and so does my dh. Mine worked for 10 years, constantly. I don't need it anymore--the other meds I take covers the pain. My dh got his life back with his. (until the leads move)
There are different types of TENS, but my insurance paid for the entire operation and for the revision (I have NO fat on my hip/butt, and the battery pack was completely visible through my skin. The wires were also shorting out--not fun) I need to just have the battery pack taken out, but it's not really bothering anything, and since the end of the TENS unit is sutured onto my spinal cord, and I have metal in my heart, it isn't like taking it out is going to mean I can have an MRI or something.
Dh also uses an over the counter TENS unit. He can use it whenever he wants. Nobody has ever said that using it too much means it won't work--and I had it working 24/7 for several years.
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Deleted
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 21, 2016 10:20:10 GMT
With the topic of pain medication on my mind today, I am sitting here wondering if others of you have friends like one of mine who one day claimed he was envious of my legitimate ability to get Vicodin. He actually said envious. I would gladly trade places to be pain free again. He was very surprised to hear that I have never, ever felt any buzz or fun feelings from any of the meds I take. And there is never any temptation to take "just one more" to see if you can get that buzz, because you know darned well what life will be like for you on the day you run out of pills and go into major pain because you wasted one prior to that time looking for a buzz. He also asked if I would be willing to "give him a couple of Vicodin" to take with him to a party he was attending over the weekend. Apparently drinking with a Vicodin feels really good? I don't know because I don't drink anymore. I have probably had 3 glasses of wine, spread over 8 years time, since being on these things. And when I knew I was going to have the wine, I took only half a Norco and much earlier than usual to let it pretty much wear off before I drank. I do miss a good glass of Merlot! But if that is my biggest loss, I'm doing just fine. Anyway, he asked me for a couple of pills. I looked him straight in the face and asked him what he expected me to do on the days I was in pain, but didn't have anything to dull it because I had given it to him? They don't understand it at all. I told him I adored him, he is one of my best friends, but I don't like him enough to be in that kind of pain in exchange for his night of pleasure. He felt awful because he truly hadn't thought of it that way. It was just, "Hey, she has a huge bottle; she won't miss a couple." So I had to let him know just what would happen to me if I gave up my daily dose for him. He was embarrassed and sincerely sorry. People just do not understand chronic pain. And I don't blame them at all. If you don't deal with it, you don't understand it. And neither did I prior to getting it. Have you had someone ask for any of your pain meds, either for the fun of it (?) or because they seriously have some temporarily really painful thing going on? Yes I have. For that reason I have stopped telling anyone I am on them. It's super frustrating. And like you said it's hard for them to comprehend. Heck I am still wide awake at 5 am from pain. I would gladly trade the meds for a decent nights sleep and to be able to function without pain. I would do it in a heartbeat.
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Post by Deleted on Apr 21, 2016 10:30:21 GMT
OKAY, I'm all caught up thusfar, but I have a few more posts to answer here......... *Concerning acetaminophen overdose or overuse: I suppose that's why I'm only allowed to be on 6 pills of Fioricet (tylenol 4) per day. If I need rescue meds beyond that, they don't include acetaminophen. I do get blood/urine tests every 3 months, so after reading all of this, I'm hoping they are checking my liver and everything! I'd love to be on something without the acetaminophen, but it's effective and the least damaging right now. I could have destroyed my stomach or bled out taking up to 20 aspirin per day! *Lexica: I can relate about the friend asking for an extra pill or 2. I actually gave 2 to a friend of mine who was in severe neck pain. He took 1 and saved 1, but that left me short and it's no joke. I'll never do it again. I now get my 180 pills and immediately put them into a 31 day pill case and divide them up so there's no question about how many pills I have in a day. They're not for fun. As far as drinking--gosh, you're right!!!!!!!! I virtually stopped drinking completely! I'm realizing that I'm making healthier choices as far as diet and everything. No more red wine, margaritas, champagne, casual drinking. I only have a tiny sip if it's an occasion. Maybe it's because my liver has been effected? I'm not sure. I just know that it doesn't agree with me any more, and part of me does get sad when I see friends or even people in movies/tv casually drinking because it looks do damned good!!! Oh well... I'm thinner and am keeping my weight off easier. HEALTHY CHOICES. We have to make them even more than the average person because we are damaging our bodies by taking meds. I only drink water............ *Shevy: I hope you took everyone's words into consideration and you get the RIGHT meds for you and the right doctors. You deserve that much. Hugs to everyone else!! *As for me........... Crappy day with reality. I do Nanny work here and there to basically pay for my co-pays, etc... Well, I lost my last job 2 weeks ago and I'm looking for another one. In the meantime, I had to pay my co-pays on my meds, and just realized how short I am with my budget. Trying not to worry, but, how sad is that when we have to worry about paying for meds we need or a doctor we NEED to see??? Grrrrrrrrrrr! I'm sorry! Nannying has to take a toll on your body. It did mine when I was much younger. I guess it depends on the ages. I hope you find something better soon. Stress certainly makes pain worse.
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Post by shevy on Apr 21, 2016 15:05:46 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. shevy: Have they ever suggested tylenol 4?? (That's Fioricet: butalb/codeine/caffeine/apap). I'm on 6 pills/day, which is the MOST any insurance company would approve (as far as what I've been told). I had to FIGHT them for this dosage alone. These pills normally make my head/brain pain go from a 9 every morning to a 4 or thereso. Maybe it would help. I know that initially the protocol was to take 1 pill and if it wasn't effective after 2 hours, you could take another, but always try with just 1. Well, 1 NEVER, EVER worked for me. 2 pills does work. It doesn't work in some circumstances, but for the most part it's my main med of choice for me. DON'T BE CONCERNED with being seen as a "drug seeker". If you have true chronic pain, then you are entitled to have help in finding the most effective meds for you!!!! We ARE drug seekers when our meds don't work and then we're seeking other meds to accomodate us. The pain mgmt team's JOB is to get you on the right meds and to be at the lowest dosage possible but have it be effective. YOU HAVE THAT RIGHT. I do hope you'll keep researching, taking notes, asking questions and trying to find the right meds for you! Good luck!! (I'm a persistent pain in the ass!! I'm pushy and I'm proactive. I come into the doctor's offices with my briefcase, with files and notes. They know I'm not a seeker, and I'm sure they know you're not.) Someone else here said it perfectly: that we are dependent but not addicts. I've never heard of Tylenol 4; never been offered it. I did notice these last few days trying the Tramadol that my whole body ached like I had influenza. Horrible. So that's not an option.
I also have a TENS machine. I walk around with the 2 inch pads on my face a lot. At home and at work. The 1 inch don't stay on my face. So I use the TENS on days when I just can't stand anything and I use it for about 8 hours at a time.
I left a message with my new TMJ dr for a pain management clinic referral.
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Post by Lexica on Apr 21, 2016 16:40:16 GMT
I can't remember who had the TENS unit--Lexica? You said that it wasn't as effective if you kept using it... I have an INTERSTIM, and implantable TENS unit, and so does my dh. Mine worked for 10 years, constantly. I don't need it anymore--the other meds I take covers the pain. My dh got his life back with his. (until the leads move) There are different types of TENS, but my insurance paid for the entire operation and for the revision (I have NO fat on my hip/butt, and the battery pack was completely visible through my skin. The wires were also shorting out--not fun) I need to just have the battery pack taken out, but it's not really bothering anything, and since the end of the TENS unit is sutured onto my spinal cord, and I have metal in my heart, it isn't like taking it out is going to mean I can have an MRI or something. Dh also uses an over the counter TENS unit. He can use it whenever he wants. Nobody has ever said that using it too much means it won't work--and I had it working 24/7 for several years. I have been told by two different PTs that I should wear it for no longer than an hour at a time, with breaks of 2 to 3 hours in between. This was at two different facilities with at least 10 years going by between receiving the units. The facilities were not related to each other. Both physical therapists explained that your body gets used to the signal over time and becomes desensitized to it to where it will not be as beneficial as it was originally. I have friends who have been told the same thing when issued their TENS units. The human brain is amazing in the way it can override something that is very irritating. Like a noise. If you were in a room with an irritating constant hum, after a period of time, you no longer notice that hum. Have you experienced that? Noises that are intermittent are much more annoying because you cannot predict how loud and how long it will run and your brain doesn't really tune those out. I need the unit to work for me permanently, so I vary the amount of time as well as the level of input. My preference is having it wide open on the strongest setting. That confuses the pain signals the best for me personally. I have let it run for longer than an hour when on a very long drive and it did work for the duration, but I don't do that very often. If this is not true, and I can wear it for long periods of time without risking losing the effectiveness, I would love to know that! As far as having a unit implanted, I have zero experience with that. I just assumed they were running a disruption signal that varied in intensity and frequency, stopping for a period of time, then starting up again. I am curious about the implants. Can you feel the buzzing while it is running or is the setting too low to notice due to the closeness of the attachment point to nerves?
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Post by BeckyTech on Apr 21, 2016 17:15:18 GMT
shevy, you may already be aware of this, if so, excuse me for bringing it up, but I would assume you are on a generic? After several years of going to the same place and then having to switch pharmacies, I only discovered a couple of years ago that the manufacturer makes a huge difference in the efficacy of my pain meds. I was thinking there for awhile that I might have to ask for an increase in dosage until I lucked onto a different manufacturer at the pharmacy. I couldn't believe how much more effective it was than the others!
It seems pharmacies put their generics out to bid about once or twice a year. They will change manufacturers. The different manufacturers use different mixers (for lack of the proper term) around the main ingredient. The different mixers affect people differently. Some may cause the medication to be absorbed faster and therefore not last as long. That's what was happening to me, every time I would take a pill I would think "here goes another placebo" because it would only bring relief for about an hour or two instead of four hours. One place was using a manufacturer that caused me to go to sleep (no quality of life if you sleep through it).
For awhile, my pain doctor was requiring all patients to use a special pharmacy that specialized in pain meds. They stopped doing that, but when Costco switched from my preferred manufacturer to another one that wasn't at all effective, I went back to that specialized pharmacy because I could request the manufacturer there, even though it's not what they would dispense if I didn't ask for it. Wow, what a difference in quality of life! I did a little searching on the internet and found out I was far from alone. Now one of my most important lists is of the different manufacturers I have tried and which one is effective and which ones are not.
On another topic, I don't get your doctors. Here if you are under the care of a pain specialist, that is the only person you see for your pain medications. Always. I'm stable, so I go 4 times a year for the testing and to touch base/get refills for 3 months at a time.
Lexica, you bet I have a stash. Sometimes I sleep through a dose time and take it an hour or even 1.5 hours later than prescribed, so it allows me to build up extras.
I found a great app to give me elapsed time. Most prescription apps will count 4 hours apart, but if you take the pill late, it needs to be 4 hours from the time you took it, not the time you are scheduled. In case anyone wants to know, it is called Dosecast. I use the free version. The paid version keeps track of history, and I don't need that feature. I like it because sometimes I'll be busy when the time comes up, but this allows me to mark "yes, I took it" instead of "uh oh, did I take it when the time came up 10 minutes ago?"
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Post by shevy on Apr 21, 2016 17:42:20 GMT
BeckyTech I have never heard of that! I do know that my manufacturer chances about every 6 months, but I've never paid attention to it. I'll start doing that now. The pain specialists I've had have always switched me back to my primary care dr when stable. But I'm going to ask to stay with the clinic this time.
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Post by BeckyTech on Apr 21, 2016 17:57:57 GMT
BeckyTech I have never heard of that! I do know that my manufacturer chances about every 6 months, but I've never paid attention to it. I'll start doing that now. The pain specialists I've had have always switched me back to my primary care dr when stable. But I'm going to ask to stay with the clinic this time. I looked it up and it's called the binding agent. Yeah, I thought I was a little crazy because I thought generics were supposed to be the same, but a pharmacy owner explained to me that I wasn't at all crazy. It really helped! Maybe you can Google and find some discussion threads online pertaining to your meds. You can identify the manufacturer by the markings on your pills. Start with this database input the markings on your pills. Get the manufacturer name and then Google manufacturer name and name of pill and look for discussion threads. Good luck!
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Post by Lexica on Apr 21, 2016 19:58:06 GMT
Lexica , you bet I have a stash. Sometimes I sleep through a dose time and take it an hour or even 1.5 hours later than prescribed, so it allows me to build up extras.
I found a great app to give me elapsed time. Most prescription apps will count 4 hours apart, but if you take the pill late, it needs to be 4 hours from the time you took it, not the time you are scheduled. In case anyone wants to know, it is called Dosecast. I use the free version. The paid version keeps track of history, and I don't need that feature. I like it because sometimes I'll be busy when the time comes up, but this allows me to mark "yes, I took it" instead of "uh oh, did I take it when the time came up 10 minutes ago?" Becky, I love the idea of an app to be able to tic off that you took each medication! I do pretty well, but when I am dealing with a particularly bad fibro fog, I get quite ditzy and will wonder whether I took a dose or not. I have to wait to see if the pain ramps up to be sure I didn't take one. Once, I accidentally took two of the time released Morphine because I couldn't recall if I had done it. I was so groggy! I hated it. Plus, I was angry at myself because that meant I was going to have to go without the Morphine on some other day when I undoubtedly really needed it. That would be good for my mom too. She forgets all the time. And with her, I am the one that fills her weekly pill dispenser, so she knows just to go by the day of the week. She has some that must be taken at night and others after breakfast. She has forgotten the evening ones a few times because she will only check the morning bin, and if it is empty, she figures she is done. And none of her medication makes her physically feel different right away so she has no other way of knowing. I think this will make it easier for my sister when she is at her house too. I figured you would have yourself a proper backup supply. I don't do very well by purposefully trying to leave a dose off to build up my stash. I do have periods of extreme sleep where I am too exhausted to keep to my medication schedule and can usually put aside a couple of unused pills from those spells. My surefire way to build my stash though, is any time I am hospitalized. They do not allow me to bring my own medication with me, so I take theirs and that gives me a good bit at home to move to my stash. I should start building another week's worth just for that extra peace of mind. It certainly doesn't hurt.
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 22, 2016 3:56:41 GMT
Quickly responding to the last few posts here and adding one quick thought..........
me: I'm sorry you were up at 5 am, in pain. That's the worst. I hope you were able to feel a little relief and to get some sleep. Those are the times that i'll sneak 1 (or 2.. sshhh!) of DH's Xanax just to be able to sleep. Hope it's safe! As for the Nannying thing, thank you. Just found out that a GREAT interview I went on, went to someone else. No idea why. I thought we were a great fit. I'm bummed out. Stressed that I need to find a little bit of work to get by. For me, it's usually a breeze to watch a baby or a toddler and I love it. I'm great at being a nurturer. I had to stop working in the legal field because too much reading, writing, stress, deadlines, etc... were deeply affecting my health. I tried working at Jenny Craig, as a counselor and then their Program Director, but even that was too stressful to me, so I stopped work and finally figured out that I was a disabled person, as much as I hated to deem myself "different".
shevy: I believe my Fioricet is referred to as Tylenol 4. If you can't take tylenol, then it wouldn't be appropriate, but it's the strongest of the tylenol mixtures. Also, the Tramadol did NOT work for me. I stopped it after 1 week and I did feel horribly sick from it. I have a few Rx's that I kept the bottles with an "X" I wrote on it b/c it was ineffective or I felt very sick from it.
BeckyTech: A few GREAT ideas! Thank you!! I had no idea about the different manufacturers of the meds. In the past, the pharmacist would tell me not to worry if a pill would be a different color or shape, but NEVER did they alert me that it could have a different effect. Yeesh! I'm bringing this up to my Pain Mgmt doctor in a few weeks. Thank you! They already knew that I tried using Medicare's mailing pharmacy, but that was a big mess with pain meds that you need that moment, so i switched back to my Publix pharmacy that's open every day. I'd have thought they'd suggest a better pharmacy if that was an issue... It's something to think about.
The idea of the app for your meds is a great one!! DH sometimes has to remind himself of which day it is so that he could tell if he took his pills or not. This might be a better idea!
Your comment: "On another topic, I don't get your doctors. Here if you are under the care of a pain specialist, that is the only person you see for your pain medications. Always. I'm stable, so I go 4 times a year for the testing and to touch base/get refills for 3 months at a time." I was seeing my pain dr every month, as i was trying to figure out why my pain became INTENSE 24/7. I found a surgeon and got to the bottom of it but that road took 2 years, and my pain dr saw me monthly until I became stable, and now I see him every 3 months. We're still trying to find a more effective rescue Rx, but that's all he could do.
Good ideas, all!
Final quick thought: I was distraught after hearing about Prince's death. Now I'm hearing that he was healthy (overall) and led a clean life, HOWEVER, he had a pain mgmt issue with his hip (don't know why he didn't get a hip replacement). BUT, he had to make an emergency landing (close to home) to go to a hospital. Word is that he was administered a "save shot" to counteract an overdose of an opiate. He stayed there for only 3 hours and was suggested to stay overnight. His people asked for a private room and the hospital couldn't accomodate him, so he left and went home. If he, indeed, took to much opiate Rx (I wouldn't even consider street drugs considering how clean his life sounded), he'd need to be monitored for at least 24-48 hours. Instead, he went home, put on a concert, went to a jazz club, rode his bicycle around his compound, was seen in and out of Walgreens a few times, picking up Rx's. I'm just wondering and hoping that this wasn't somehow connected to the misuse of pain meds. Prayers to his family though. The music world and the entire world itself has lost a great man who gave back so much to the universe.
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 22, 2016 5:05:32 GMT
Quickly responding to the last few posts here and adding one quick thought.......... me: I'm sorry you were up at 5 am, in pain. That's the worst. I hope you were able to feel a little relief and to get some sleep. Those are the times that i'll sneak 1 (or 2.. sshhh!) of DH's Xanax just to be able to sleep. Hope it's safe! As for the Nannying thing, thank you. Just found out that a GREAT interview I went on, went to someone else. No idea why. I thought we were a great fit. I'm bummed out. Stressed that I need to find a little bit of work to get by. For me, it's usually a breeze to watch a baby or a toddler and I love it. I'm great at being a nurturer. I had to stop working in the legal field because too much reading, writing, stress, deadlines, etc... were deeply affecting my health. I tried working at Jenny Craig, as a counselor and then their Program Director, but even that was too stressful to me, so I stopped work and finally figured out that I was a disabled person, as much as I hated to deem myself "different". shevy: I believe my Fioricet is referred to as Tylenol 4. If you can't take tylenol, then it wouldn't be appropriate, but it's the strongest of the tylenol mixtures. Also, the Tramadol did NOT work for me. I stopped it after 1 week and I did feel horribly sick from it. I have a few Rx's that I kept the bottles with an "X" I wrote on it b/c it was ineffective or I felt very sick from it. BeckyTech: A few GREAT ideas! Thank you!! I had no idea about the different manufacturers of the meds. In the past, the pharmacist would tell me not to worry if a pill would be a different color or shape, but NEVER did they alert me that it could have a different effect. Yeesh! I'm bringing this up to my Pain Mgmt doctor in a few weeks. Thank you! They already knew that I tried using Medicare's mailing pharmacy, but that was a big mess with pain meds that you need that moment, so i switched back to my Publix pharmacy that's open every day. I'd have thought they'd suggest a better pharmacy if that was an issue... It's something to think about. The idea of the app for your meds is a great one!! DH sometimes has to remind himself of which day it is so that he could tell if he took his pills or not. This might be a better idea! Your comment: "On another topic, I don't get your doctors. Here if you are under the care of a pain specialist, that is the only person you see for your pain medications. Always. I'm stable, so I go 4 times a year for the testing and to touch base/get refills for 3 months at a time." I was seeing my pain dr every month, as i was trying to figure out why my pain became INTENSE 24/7. I found a surgeon and got to the bottom of it but that road took 2 years, and my pain dr saw me monthly until I became stable, and now I see him every 3 months. We're still trying to find a more effective rescue Rx, but that's all he could do. Good ideas, all! Final quick thought: I was distraught after hearing about Prince's death. Now I'm hearing that he was healthy (overall) and led a clean life, HOWEVER, he had a pain mgmt issue with his hip (don't know why he didn't get a hip replacement). BUT, he had to make an emergency landing (close to home) to go to a hospital. Word is that he was administered a "save shot" to counteract an overdose of an opiate. He stayed there for only 3 hours and was suggested to stay overnight. His people asked for a private room and the hospital couldn't accomodate him, so he left and went home. If he, indeed, took to much opiate Rx (I wouldn't even consider street drugs considering how clean his life sounded), he'd need to be monitored for at least 24-48 hours. Instead, he went home, put on a concert, went to a jazz club, rode his bicycle around his compound, was seen in and out of Walgreens a few times, picking up Rx's. I'm just wondering and hoping that this wasn't somehow connected to the misuse of pain meds. Prayers to his family though. The music world and the entire world itself has lost a great man who gave back so much to the universe. Be careful with the xanax and pain meds. My psychiatrist won't prescribe benzos because I am on pain meds. For awhile she did valium but now she won't do that. She said that even taken as prescribed they can lead to death so be careful. Also, at least for me, if I test for something that is not prescribed to me but is in my system, I could lose my pain meds. At least it is in my pain contract. I have never had it happen. I absolutely love babies too. The baby right now where I am at looks like the Gerber baby. I watch her when I can but there is no way physically I could nanny again. I am surprised that you can handle babies. My back is super sore tonight from walking around with her. She loves being outdoors.
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 22, 2016 17:55:33 GMT
me: Okay, that scared me enough to not take 1 anymore. Thanks. I do get my blood/urine tested every 3 months but I supposed because I only take it occasionally, it didn't show up? Not sure.... They have approved of Ambien in the past and then we switched to Temazapam but it's not as effective... Anyway, I don't want to die so I won't chance it anymore...... Thanks.
About the nannying... if i have a day where I'm bedridden, then I can't do it, but for the most part I'm able to get thru a few hours, get home and poop out. Physically my body's in great shape except for my headpain. I try to keep physically fit. Today I'm having a bad (but not REALLY bad) pain day. I feel like it'll get to the vomiting/bedridden part later on. I hate that. I just took my rescue Rx and I hope it'll help. Hate to wait and see........ So, on days like THIS, there's no way I could watch a baby even for a minute! But that aside, this is the easiest for me to earn some food dollars. I can't concentrate for too long, or read for too long, but being physically active is the least damaging to me. The last family had me get in tip-top shape. I got real muscletone back and lost an extra 7 lbs I had...... It was good to feel busy and active while I could do it. Hope you're having a decent day.
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Post by BeckyTech on Apr 22, 2016 19:13:01 GMT
BeckyTech: A few GREAT ideas! Thank you!! I had no idea about the different manufacturers of the meds. In the past, the pharmacist would tell me not to worry if a pill would be a different color or shape, but NEVER did they alert me that it could have a different effect. Yeesh! I'm bringing this up to my Pain Mgmt doctor in a few weeks. Thank you! They already knew that I tried using Medicare's mailing pharmacy, but that was a big mess with pain meds that you need that moment, so i switched back to my Publix pharmacy that's open every day. I'd have thought they'd suggest a better pharmacy if that was an issue... It's something to think about. It's not a matter of a "better pharmacy." I may not have been very clear. Every pharmacy gets bids on their meds a couple of times a year and may switch manufacturers for any given medication. It's all up to the buyers who work at that chain store. Around here I found that Walgreens and one of the major grocery store chains are using the same manufacturer, Costco uses someone else and so on. So yes, when they tell you that it is a different color or shape, they have switched manufacturer. You could call around to the various pharmacies, find out their manufacturer for your medication, then see if you can find any threads where people are discussing that manufacturer to see what you can find out before you see your pain doctor. That way if you want to switch pharmacies because they carry a manufacturer that a lot of people seem to find effective, you can alert him/her at your appointment. As we all know, changing pharmacies too often is a red flag, so doing your research beforehand will pay off. Good luck!
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Sept 29, 2024 22:22:03 GMT
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Post by Deleted on Apr 23, 2016 21:48:11 GMT
Thank you, Becky! I will do that..... I've only seen a switch in my meds once, but I'll check around....... I appreciate your input.
**Thinking about starting a new thread about Prince's death, because it's becoming more of an overdose issue. Of course I'm deeply saddened by the loss of such a great musical genius, but I'm also quite scared that this may impact the guidelines for pain mgmt meds again. I cannot understand how he "took too much" if he was with a pain mgmt doctor for his ongoing pain issues. If it turns out that he cross-abused, then that's another issue. I'd never think, "Ooh, i normally take 2 pills at a time... I'm in such pain, that maybe I'll take 10 pills at once and see how I feel......" i hope that wasn't the case. I have no idea how he could have used that much, knowing the rest of the month he'd suffer...... ANY WAY IT ENDS UP, I know that this will result in the FDA cracking down on doctors issuing Rx's for opiods and serious pain meds. I hope that nothing will change because it's hard enough as it is! I can't see how they could possibly make it any safer!
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