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How do I find a good PM doctor?

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:22 AM in Chronic Pain
:''( I am on my 3rd PM doctor in 7 years. I am very unhappy with the one that I have right now. I loved the PM that I had before my current but he moved to the other side of the country. This is the last PM in town now.(except for the one that I fired, who was my first!) I live in a large town but we don't have that many doctors to choose from in this field. I have been seeing my current PM for about 3 years now and I have gotten much worse over time. Not once since I have begun to see him has he ever even examined me. He has never sent me for a test, except to check my blood levels every 2 months to see if I am getting extra somewhere else, he has never weighed me, taken blood pressure, nothing. He hasn't even asked me to tell him what is wrong or at what level my pain is at on the pain scale. I am also not allowed to bring up anything about my pain, he cuts me off immediately and then chews me out. He says that he has diagnosed me with Fibromyalgia but has never examined me for that either. My second doctor was very involved in my pain management and my health. I had to have reconstruction surgery about 6 years ago and was bumped up to a very high level of pain meds. to try and control the pain. I was on 320mgs of oxcontin (tablet form long lasting) twice a day and my pain stayed at a level 5 on the pain scale. It was still there and still hurt pretty bad but was tolerable and I was still able to function and do things. My current PM cut my meds to 240mgs twice a day and also cut out my oxycodone for breakthrough pain altogether. I gained 35 pounds immediately and was no longer able to do anything anymore. I cannot even get ANY excercise at all. I live like a mole. I no longer eat, no excercise, I can't clean my house or pay my bills, file my income taxes, go anywhere, and haven't slept for over 7 years. I can't even sleep in my own bed at night, I have to try and sleep sitting up. I have moved to a large chair in the living room ans stay there all day and night watching TV. I am not even able to bathe on a regular basis now, only about once a week if I'm lucky. I am only 44 years old! I know that as I continue to get worse there will come a day when I won't be able to take this anymore. I cry from the pain all of the time. I also take over 300 Aleve per month to try and help with the pain. About 1 1/2 years ago I had a very bad fall and landed on my back, exactly where I have had my surgery's. The pain has gotten even worse since then. When I told my doctor about this a few weeks after I fell, he said nothing and just ignored it. My "good" surgeon had told me that if I ever fell that I would have to have new tests doone to see if there was any damage. Oh well! Since the fall I have crunching sounds in my spine and I can even feel it crunch. But there is nothing that I can do about it. My PM told me that if I ever saw a surgeon while I am in his care, that he will stop my care immediatley and no longer see me. I am so stuck and feel so helpless. My husband works out of town about 7 months of the year so I can't go to a larger city to find a better doctor. I can't drive myself because I fall asleep at the wheel because I am so sleep deprived. It would be about a 3 hour drive. I am scared, I am tired of living this way, and I worry that if the Aleve doesn't kill me from organ damage that I will end up doing something to myself. I don't know what to do. Please help? If anyone has any advice I really need it. I am really at the end of my rope here and I want to have a life, I'm not ready for it to be over yet.
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Comments

  • Have your primary doctor refer you to a new pain management doctor....
  • How do I find a good PM Dr.? I always wanted to help out with this question, but never had a chance. Now I have that chance. After seeing what you wrote, and realizing that it was just a couple of hours ago, I am going to send you a PM. I don't think that everyone would want to see this and besides, I need some more information to help you out. It's kinda personal so I am sending a PM if that's ok with you....
  • and do not give up. You can and will find a doc that will help you manage your pain and help you get your life back. Please keep us posted on your progress and post anytime that you want or need to.
  • PM docs always seemed to treat me like an addict. I had one PM doc that I was with for close to a year. They did no additional testing at any point in time and wanted to have me get teh spinal stimulator. He had told me that if I was in my 70's or 80's he wouldn't suggest it at all, but since I was so young (32 started seeing him at 31) he wanted to do it. Then I started seeing ALL and I mean 90% of his patients had the spinal stimulator. I decided to see another PM. Boy were they a joke. When I first came in to see him I was on 6-8 10mg percocets per day. I told him I didn't want that many nor did I want the Percocets anymore. I told him to give me 4-5 10mg norco per day. So that is what he did. I hate taking meds but pretty much need to. Anyway I did a 12.5 hour drive with my kids. I did all of the driving because my hubby couldn't take the 7 days off. When I got home I hurt so stinking bad that I had my niece here to help with the kids and me walking around. About 2 days later I decided to go to the ER where they did an injection of dilaudid and told me to double up on the norco. So I took 6-8 instead of the 4. I ran out only 3 day's early! So I went back in and see the nurse practitioner. She refilled me. Then a month later I was talking to him and he basically called me an addict or that I was selling my meds and that the ER doc never told me to double up on my meds because he had teh ER report. I told him BS!! I asked to see the report and he provided it. I pointed out at the top where the doc WROTE down for me to double up. So the PM doc was lying or never read the report. He took me off my meds and put me on Lyrica and Ultram ER. These barely helped. He told me to let him know if they were helping and to let him know if they were not. so a week later I called and said they were not helping at all and I was a stay at home mom with a 7yro and a 2yro. Take a guess what the nurse said. Well put the kids in daycare until you feel better. Oh the nerve. So I asked her is she was going to be paying the $1000 a month so I could do this. LOL I had an appt 2 days later to try these Prolo injections because he said that I had torn ligaments and had nerve damage. I had FINALLY talked him into giving me an MRI. He gave me the results without even seeing the damn films. I had them. So he went off of the radiologists report! I went in and of course they wanted to throw me on the table right away. I said no I want to talk to the doc first. They were pissed off! I told him that if the prolo injections are supposed to make me more inflamed and in much much worse pain than I am already in then I needed something stronger. Again he called me basically a pill popper. I said if I was such a pill popping addict then why would I tell my last PM to take me off of the Oxycontin, methadone, morphine and everything else they tried me on. He told me that we would have to reschedule the apt, so I did, He had told me in the begining that if I went to the surgeon again he would drop me as a patient. Well I went to the the NS that did my surgery. He looked at the MRI films I had an said that either my hardware is loose or I have a bone tumor. X Ray ruled out the loose hardware! So I am scheduled for a bone scan on the 19th. So both of the PM docs were wrong on my diagnosis.
    To sum things up!!!! GO BACK TO YOUR SURGEON!!!! If you fell and are having pain and hearing a "crunching" noise you need to see your surgeon. PM docs dont like it when we leave them or get a second opinion. First they want to make sure you are not getting meds at more than one doc. Second they dont want to lose the income. I will NEVER EVER see a PM doc again!!! Listen to that voice in your head and go to see your surgeon!!! IF some of the hardware broke or is loose you need to get it fixed ASAP!!! Dont worry about making your PM doc mad. Tell you surgeon all that the PM doc said and is not doing for you!
  • :jawdrop: Excuse me, but do you have the same exact PM doc that I do? I swear, they sound like the same man!!!!!!
  • I had a herniated disk, L-5 S-1. I first had a laminectomy, which made me feel wonderful, I was back to my old self, until 5 weeks later when it re-herniated. My surgeon at that time said I had to go straight to a spine fusion. I was later told by other "good" surgoens that all I really needed was another laminectomy. Had I had that, my life would have been so different than what it is. Instead, after the fusion, I could see where the "Bak Pac" "hardware" was coming out. My surgeon said "Oh no, it's great!". I was the one who was right, it was almost all the out by the time I found another surgeon, this time in Pheonix, Az. 3 hours away. This is the surgeon who did the recontructive surgery. Several of the highly skilled professional that saw my films were outright shocked over what had been done to me. They said that for the reconstructive surgery they would have to use a much larger slice of pelvis to try and make the repairs. They were worried that it would be impossible. I had During surgery I had 4 spine surgeons and 3 vascular surgeons. They were very worried that I wouldn't pull throur surgery. I was in ICU for 4 days afterward. The pain was unbearable and I felt like I was going to die. I took me a year to recover from this. During this surgery they had to cut me from the belly button down to the pubic area to retrieve the hardware and then turn me over and recut my back for the 3rd time. Have any of you been cut on both sieds at the same time? It doesn't feel very good, let me tell you! A year after my last surgery I had new films taken, an MRI, and it showed that the large nerve root that came directly from the spinal cord was completely clamped off due to scar tissue. My surgeon at the time said there really wasn't anything that could be done for that because it would just grow back. This has been 6 years ago and there is no telling how much worse everything has gotten back there. Plus, the fact that I had that bad fall and it now crunches! My biggest problem in getting better doctors is the fact that I have to go 3 hours away from where I live and I am not able to get there myself, I would have to do this on a monthly basis. As I mentioned, my husband is out of town for about 7 months of the year. I am just stuck! When he retires I have hope that things will change for me but I don't know if I can wait another 2 years. I don't feel like I can wait another 2 months at this point. On average, and I am being completely honest, (I have no reason to lie because all I want is help and advice from you good people) my PM doctor spends about 4 minutes tops with me at every appointment. Just long enough to write out a new prescription. That is all he does! And he makes me see him every month for this, instead of every 2 months like my good PM did. OK, I think I've told you quite a bit, when I think of something else that is important, I will let you know. There is soooo much to tell!
  • }:) My PM is always saying stuff to me such as "Don't sell these" and "You really don't need this" etc, etc, . I hate that! And he says it while I'm walking out of the exam room. I would rather that he sit me down and let us have a heart to heart so to speak, than to make these flippant remarks while I'm making my exit. I think he got a Masters Degree in Cruel Behavior also, the other things that he has said to me over the last 3 years have been horrible. He once demanded that I have Gastric BYpass surgery when I didn't even have any weight on except for maybe 5 extra pounds. And this is coming from the man who has told me that I am never allowed to have any sugery of any kind, ever, or he will cut me off. I'm talking about if I'm bleeding out in a car accident, or if I have to have my gallbladder out, anything, I guess that I would just have to die in his opinion. And why bother to try and turn him in? It would be my word (the addict) against his (the doctor). It amazes me that they can get away with this. I happened to research the PM guidelines for Ca. and AZ. and they are allowed to do so much more for us than they want to do. And there are strict guidelines as to tell if someone is an addict. It would easy enough to realize that I am not. I hate the fact that we are treated like this. All PM's are supposed to keep our pain levels at a 5 on the pain scale. I stay at a 8 or 9 all of the time, hence the 300 Aleve per month. I'm open to therapy, anything that would help meout. But with the pinched nerve root, I don't really understand how therapy would be able to help that. But I am at least willing to try, where my PM is not. I think he is about 100 years old and doesn't keep up with anything that is new. I had never even heard of RF treatment until yesterday when I read a message on this board. How bad is that? Uugh! I am spitting mad!!!! Can you tell?
  • unfortunately with pain dr's, it is a crap shoot. some are nice and understanding but still think of you as a drug addict, and some are open about their contempt. just a work, these dr's have to deal with hustlers and addicts all the time so by nature they are suspicious. have all tests that you can and take all results to dr. make up a pain diary and be open and honest with them and by all means don't demand drugs. one of the worse things to say is that i can't take this or that and only narcotics work for me. hopefully you have your old dr's charts to show dosage and meds. you might have to try some for a couple of months to find our what their method and beliefs are. these are the hardest dr's to find and to get a good one. i have had to change also because my old one retired. he referred me to 2. one said i was a drug addict and i should not be on oxy for years, the other has been kind but firm. i treat him nice and honest and he does the same. so far the second one has worked out. i have had him for a year and a half. my old one, i saw for 10 years so i feel your pain
    good luck
    jon
    remember get ALL TESTS YOU CAN, MRI, CAT, NERVE TEST, X-RAYS, DISKOGRAPHY ETC AND HAVE ALL RESULTS TO SHOW HIM
    once again
    jon :D
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • dilaurodilauro ConnecticutPosts: 9,715
    I am most concerned regarding the amount of Oxycontin you said you were on. 80mg is about the highest dosage any doctor would write a script for. And that could be twice a day under the most severe cases. Any need for additonal pain medication would be done in a hospital.
    I am very familiar with Oxycontin, its dosages, etc.
    480mg of Oxycontin would be enough to kill any human being and probably most larger animals.
    I sure hope you post just identified that incorrectly.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • A Seahawks fan by chance?
  • seem that way! LOL I have given up on the PM docs like I said. When the first PM doc said it was severe nerve damage adn the second said it was nerve damage and torn ligaments and they were both wrong it makes me wonder. I understand that the PM docs have to deal with teh DEA and whatnot but we are not addicts. I went to the second PM doc because a very good friend of mine refered me. Her back was in some bad shape I tell yah. She said he listens and will help me and that he was the best PM doc she went to. Well she commited suicide last year and I had seen him AFTER her suicide. So I think he is being extra careful because of all the meds she had that the police took from her house. I had no idea all that she was on. Her husband had told me after I started seeing this doc. He definately OVER prescribed her. She was on about 10 different things and was allowed the max on everything. So I think he cracked down because maybe he got into trouble after the police and detectives found all of this medication that he was prescribing. That is my thought on that PM doc. BUT he still didn't need to treat me like that at all! And if I hadn't listened to my body or that little voice in my head I would still be seeing him getting injections 2xper month for 8 months at $600 each and been in more pain than I already am in. When the nurse told me to put my children in daycare and the doc didn't even care that she said that, that was the end of it. Now that I went back to the surgeon and he said it is possibly a bone tumor I would have went through all that pain and agony for nothing. MY surgeomn too wanted to make sure I wasn't seeing anyone else and that I was not on any medication. I told him I stopped the other doc and told him what he had given me and that I was not taking them anymore. He laughed and said Lyrica and Ultram?!!?! Gee sounds like they were a great help! It kind of made him mad.
    So once again listen to that voice in your head and your body! Please go back to your surgeon and get an MRI so they can get to the bottom of this.
    Also did you mis type on your meds. Your doses seem to be off big time. It you are on lets say for an example Percocet 10/325's then it is 10 of the oxycodone and 325 of tylenol. You can PM me and let me know that if you would like.
  • I want a PM that will be kind but firm. I have no problem with firm, that actually shows me that they are responsible and it helps me to trust their abilities more. I have never and would never demand narcotics. I just want a doc that work with me and the both of us be a team that has the same goal, which is to get me better, to improve my quality of life. I'm open to most everything. But you know what? A PM has guidelines to go by that helps them to seperate the seekers from the ones who really need it. I don't know why they don't utilize that more. I have learned not only from my own experience but from my research that a good PM is very difficult to find as many of them are starting to change their practice because of all of the sh$t they are going through from the DEA. It is the bad and irresponsible PM's who have made life hard for all of us, patients and doctors alike. Yes, it is a crap shoot out there!
  • I wish that I could list all of the problems that I have with my spine and knees just like everyone else does, you know, at the bottom of your topic's and messages? The problem is that I don't have any of my own medical files and I don't don't the technical terms for everything. I have issues with the entire spine from my neck all the way down to my tailbone. My spine is curved like a "S" shape, it actually has a 1 1/2" difference in the alignment. The doctor who read that x-ray that was taken years ago was completely shocked by this and mentioned Scoliosis. That was quite a few years ago. I also have where the little bony parts that stick out from the spine, like spurs or something, in my neck are all flattened down and squished on each other. I have no idea what this is called. See why I haven't listed this stuff below? My technical terms are lovely and informative aren't they? I also have 2 bad knees and have had surgery on my left one. I had 2 torn Miniscus that had to be repaired. That was only one year after my last back surgery. How does everyone get all of their information like that? I would like to do this.
  • The biggest problem that I am facing is the fact that I am seeing the ONLY PM in the area in which I live. I have to drive 3 hours one way to get to another doc. I am unable to do that by myself because I fall asleep at the wheel if I drive for over 30 minutes because of the sleep deprivation. Since my hubby works out of town for months at a time I have no one who can take me to another doc every month when he's not here. I'm stuck and completely at a loss as to what I can do at this point. Waiting another couple of years for my hubby to retire isn't really an option for me. Help! I don't know if anyone can actually help me with this but I'm open to any suggestions. I'm desperate!
  • Jewels,

    I am really sorry for all your pain and suffering. It seems endless and I really know how you feel when you say death seems easier to face at this point. But you have to hang in there. You really need to find a doctor that cares about the patients. Even a new Primary Care Doctor that can just help a little might make a big difference.

    Hang in there....you are among good spiney friends here! :X
  • Yes, finding this message board has been like finding a lifeline for me. I told my husband that I have finally found "My own people" or "My own species". LOL!! Luckily I have a husband who can empathize with me because he suffered for over 20 years needing a hip replacement. He finally had it done about 2 years ago but for 2 months prior to surgery he was no longer able to even walk due to the severe pain. Thank God that I have him! My heart really goes out to those who have no one who can understand their pain. As I've said before, everyone needs a soft place to fall. Now I have two. I've started doing a lot of research into a couple of Laser Spine Institutes that can repair most spine issues and decrease pain immensly or possibly all of it. Of course they happen to be on the other side of the country but with careful planning and penny pinching, it could be a very real possibility. With this type of surgery it's done as a minimally invasive procedure with only less than an inch incision. They are usually able to close with only a bandaid. They can also remove hardware and scar tissue with this method. People come from all over the world for their services. It's also done under sedation instead of general anesthesia and it's also an outpatient procedure. You do have to stay in town for 5 to 7 days though. It would be costly but we feel it would be worth it to get my life back. I'll keep everyone informed as to what I learn, if it's really as good as they say it is. For those of you on the East coast or those who already live in Florida, this wouldn't be nearly as expensive as it would be for me. Also, if anyone else knows anything about these places, I am open to your opinions or experiences with them. One of them is called LSI, the Laser Spine Institute. I can't remember the name of the other one.
  • I have been through so much in the last 8 years, including having to defend myself to everyone, my doctors, my family, my former friends, and my former coworkers. I thought that I had finally found where I belong but I was wrong. I don't have anything left in me to have to defend myself to some of the people on this message board too. My mental state is way to fragile for this.

    I will not be returning to this message board in the future. I'm sorry to have bothered all of you with my problems. I wish some of you my best and hope that you find the relief that you need.
    Goodbye,
    Jewels

  • 800 mg of Oxy, omg, I am sorry to hear of your pain, but no wonder your having a hardtime.Most any doctor would have to worry about the DEA x-raying his every move.I don't want to sound like a bad guy, just a realist.lets see 10 x 80 x 30 days is a lot of heavy dosae there and diversion is a very real worry at that level.

    I hope that you find relief soon, pain is terrible and there are a lot of clinical trials too.
  • I posted it correctly. I've been on this doasage for at least 6 years now. Actually, I was on 400mg twice per day, 800mg total and then my current PM reduced me to 320mg twice per day, 640mgs total. The reduction of 160mgs changed my life from being able to actually have one to now being home bound, unable to eat, unable to clean, unable to bathe, unable to cook, etc.. I was able to all of these before although I was still unable to work. I had to do everything in moderation and take plenty of breaks. Now I have zero quality of life. How I ended up on this dosage in the first place is because of the recontructive surgery that I went through. It was a very dangerous 8 hour operation that left me in critical condition. I had to have though or I would have been left paralyzed from the waist down. I was cut open on both the front and the back, all the way on both sides. I was critical for 4 days. During those first 4 days I didn't even know that someone could survive the kind of pain that I was in. I had become delirious and began to beg my husband to make them take it back. Now I was a pretty strong woman at that point, I had already gone theough 2 back surgery's and over 1 year of working full time with the sciatic pain where it was so bad I was dragging my left leg behind me when I walked. After I was released from the hospital my surgeon had me on the 400mgs of Oxy and my then PM worked in tandem with him on my pain and recovery. It took over a year for me to recover from this one. I was also still left with severe pain because that was not what the surgery was for. So at this point my body had become extremely tolerant to the higher dosage and there was no going back for me. Although at that time I was with my "good" PM and we were looking for another option to help with the pain so I wouldn't have to rely on the pain meds. Now that I'm with my current PM he doesn't want to explore any options because he does not believe in surgeons. He even made me cancel my Mylogram that my surgeon had set up for me. He didn't want me to go on anti-depressants because he said that "I look happy". Anti-depressants have made a world of difference, I probably wouldn't be here now if it wasn't for them. I'm the one who had to tell "him" about the correlation between severe pain and depression. Can you believe that? Not only is my current PM not educated but he also firmly believes that my pain isn't very bad at all. He said that I don't even need anything for pain. He needs to live in my body for just one hour and he would change his mind real fast! But no, the higher dosages are actually just fine as long as you go up on your dose slowly and over time, it's called Tritation. I know a man who is on 1000mgs of Oxy and he was able to go back to work. I admit, I gasped when I heard that amount. I have done extensive research into oxy also and if you are using high daosgaes it's not as bad as someone may think. It's when they are combined with other meds that can depress the respitory system that you will run into trouble. I don't do that. I have gotten this particular info from 2 states government regulatory pages on oxy. Can you believe that I still can't sleep with this dosage? I still wake up constantly from the pain. Personally, I feel that if I could just get my restorative sleep back that it would help me be able to handle many of the problems that I have. My body never has a chance to heal itself. Plus, I'm completely open to other options to help with my pain. I would love nothing more than to reduce my meds to a much lower dosage. It would be so much easier on my life. As it stands, when my husband is out of town working for months at a time, I can no longer go with him because I can't find a doctor to take care of me while I'm away. I used to go with my husband all of the time. I miss him terribly and are lives have changed drastically. Although you believe that a person may not be able to function on such a high dosage, believe me, you can, as long as you are used to it. I'm still allowed to drive and everything. It doesn't make me sleepy, it doesn't make me high, nothing. I'm just my normal self. If you have any other questions I am perfectly happy to answer them. I'm very honest and open about everything. But just a sidenote, even with the high dosage that I'm on, I still have to take 300 Aleve per month just to help with the pain. Between the fall I had where I landed on my back that caused it to crunch, and the dosage being lowered, I have to depend on the Aleve to help.
  • I haven't been on 800mgs for over 2 years. I take 320mgs twice a day for a total of 640mgs total. Did you read the post #13 "Nope" in response to "Dilauro"? That explained the whole story. What I find kind of funny or odd is that no one here has ever heard of anyone on that type of dosage. I happen to know of many people on that dosage and higher, plus, through the research that I have done I have learned that this is not uncommon at all. If any doctor of mine has taken the time to read my medical records then they should know and understand as to why I am on the higher dosage. The last surgery that I had was extremely difficult and took over a year to recover from. As I said, read the post that I mentioned. And to top it off, my body has built up a tolerance to this dosage and I actually need to go up because this just isn't cutting it anymore. I have NEVER been opposed to other forms of pain management, but the doctor that I am currently with, is! I have been completely neglected! The PM that I had before him was helping me to find other options when he moved his practice to the other side of the country. So, it's either that I stay on this dosage, go up on this dosage, or eventually find a new PM. I'm basically screwed right now!
  • dilaurodilauro ConnecticutPosts: 9,715
    Reading both the Pharmaceutical pages and physician journals, the maximum dosage of Oxycontin ER is 180mg and that is very very very rare.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Ron,

    Just prior to surgery and detox June 07, I was taking 100mg of Oxycontin ER every 4 to 6 hours along with an additional 300mg of Oxycodone IR for breakthrough throughout the day. My pain levels stayed at a 7 - 8.

    As soon as I arrived at the pain clinic the doc switched me over to 30mg of Oxycodone IR every hour (60 minutes) for the two days prior to surgery and detox.

    While on this level of narcotic I was still very functional, still working and driving.

    Some times the books just don't quite fit everyone's ability to metabolize drugs.

    In addition to this I was also on 1600mg of Neurontin three times a day and 100mg of Lamictal twice a day.

    "C"
  • I did state my dosage incorrectly. I was on 320 mg's of Ocycontin twice per day for a total of 640mg's and I also had Oxycodone for the breakthrough pain. I am now currently taking 240mgs twice per day for a total of 480mgs. I aplogize for the error! Anyway, with the 320mgs I stayed on average between a 5 & 6 on the pain scale. I was fairly functional as to being able to get excercise, cook, clean house, all of the basic stuff that you have to do in life. I was also able to drive perfectly fine. I have never been able to go back to work. I WISH! I was in the middle of starting my own business of baking wedding cakes which I could do on my own time and when I felt at my best. If I did just 2 a month I could bring some extra cash into the home and stay busy at the same time doing something that I love.

    When my current PM took over he kept me on this dosage for about one year and then began to decrease my dosage every month by 80mgs at a time. He also stopped giving me anything for breakthrough pain. On the third month when he had me down 240mgs less than I had been on, it completely floored me. My dosage was 240mgs in the morning and 160mgs at night. I stayed that way through the month until my next appointment. I was already not doing very well on the lowered dosage above that. But I never complained and he never asked. By the next appt. I was having to use a walker just to get around. He could see the obvious pain showing on my face and he upped my dosage back to 240mgs twice a day.

    Within the 2 months that this had been going on I had gained over 30 pounds and that includes that one really bad month where I didn't have one single bite of food for the entire month. This reduction of med's has completely changed my life. We had to move our bedroom from the upstairs huge, luxery master bedroom to the small downstairs bedroom because I can no longer use the stairs. I had to give up my cake business, and my husband who works on average over 100 hours a week has had to take on the housecleaning, bill paying, cooking, and everything else. This is also when I started having to take the Aleve and I now have to walk with a cane.

    My surgeon who first put me on the higher dosage is a very highly respected surgeon who does surgery on the Pro Football athletes and has also done surgery on Presidents. After doing my homework I had finally found one of the best. He was in charge of my pain control in tandem with my former PM for the first year. I have tremendous respect for these men.

    I know that everyone has different beliefs, and we've all done our own research. But I happen to be very comfortable with my current dosage in regards to the quantity. I am now at a level 8 to 9 on the pain scale. I'm much more concerned over the extremely high quantity of Aleve that I have to take. I can't imagine the damage that has done to my kidneys and my liver, especially since my kidneys are already in partial renal failure. As I've mentioned I take on average 300 Aleve per month.

    Studies have shown that severe chronic pain causes stress on many of the organs and mostly on the heart. Many people in our position are more prone to having a heart attack earlier in life. This is also very scary for me since my father passed away from a massive heart attck when he was only 47. That's only 3 years older than I am now.

    From the advice that I have been given on this message board I will be seeking a new PCP and also get a Rheumotologist. Until I can find a way to get to the city on a monthly basis to see a new PM I feel that this will be a very good start. I've also learned what to look for in a new PM, it may be a difficult search but with patience I'm sure that I will find the right one.
  • image:)" alt=">:)" height="20" /> I had just written a long message and told the entire situation but it didn't go through! Then it wiped out everything that I had written. Suffice it to say, I opened the phone book to find a Rheumotolgist and there is only 1 in town. I happen to live in a huge town/small city, and we have only ONE Rheumy? I'm pretty PO'd right now, I happen to dislike this Rheumy, he's partners with my PM and has already proven himself to be stupid and a jerk. I even looked up rheumy's under WebMD, and this is the only one that came back. I am frustrated beyond words. Not sure what my next step will be, but right now I'm going to eat a brwonie and drown my sorrows! :''( I still plan on fighting, I'm not giving up, but why in the heck does this have to be so hard? A population of 200,000 with 1 rheumy? it just doesn't make any }:) sense!

    Brownie time! :S
  • =)) WHERE I LIVE? WHAT A JOKE! :))(
  • But have you really seen him as a patient? Maybe he won't be as bad as you think! I wish you luck! :)
  • My Pm had diagnosed me with Fibromyalgia after I had come up positive in a blood test for Lupus. My PCP said the blood test was nothing to worry about. Well, after I read up on Lupus and discovered that I have basically every symptom but the red rash, (which you don't always have) I became concerned. So I went to my Pm and told him that I wanted to re-run new blood work for Lupus. He said fine and got his partner to take care of this, the rheumy. While I was having my blood drawn, I asked the guy (the phlebotomist) if there was an order for Lupus there. He said "no" that it was only for Rheumatoid Arthritis. I had already had this test done before and came up negative for it. So why was I being tested again for this and not for Lupus? I was so mad! On top of the fact that my pm diagnosed me with fribro without even giving me an exam. I've done a lot of reading about fibro and I have les than half of the symptons for that. I have to say, my confidence in this rheumy is about as low as it is for my pm. And as I mentioned, they are partners. I would really like to have a rheumy that I can be honest with, be able to tell him everything that is wrong with me and how I've been treated by my pm. There is no way that I can do that with this guy. I don't know what to do. I'm pretty deflated right now! I also just finished stuffing my face with that brownie. If you have any ideas I'm willing to listen.
    Thanks Fuzzy!
    Jewels
  • Jewels, this is the first time that I am getting to read all of this. As you know, I haven't been able to get to the message board in a few weeks. I am flabergasted at some of these remarks here. Not only should you not have to defend the amount of medicine you're taking but you should not have to clarify anything to anyone. What some of our good friends here on the board don't understand is that everyone is different, and we all have different thresholds for pain tolerance for meds. I knew someone that was taking 80 mg OC four times a day. That's 320 mgs a day, and it wasn't working for him. The Dr. increased him to twice that amount by putting him on the 160s four times a day. Yes it is alot of medicine but whats alot of medicine for one person may not be alot of medicine for another. I'll give you far instance. Most people who don't live with CP take 1 10 mg percocet Q 4-6 hrs for pain. Sometimes they will take two of them Q 4-6 hrs. That would be considered a seriously large amount of narcotic to them. Thats 20 mgs every 4-6 hours. A Dr. would consider that alot of medicine. What about the CP patient that takes 60-75 mgs every 4-6 hours? That's three times the amount of the non CP patient and we think nothing of it. Bump the medicine up to a Long Acting med like OC and it's actually easier to handle the larger amounts because they are long acting. One thousand mgs of Oxycodone in a day is quite the feat, heck I don't think I've ever done that one before, but it is alot of medicine. Who's to say that the person taking 1000 mgs a day is taking too much. Maybe that's what works for that person. We all have different systems and we all can tolerate different meds and amounts. We shouldn't be telling someone that they're taking way too much of anything. Jewels, you keep on truckin. Maybe sit down with the PM guy and talk about less Long Acting and adding some immediate release BT meds instead of all that Aleve.
  • Hello everyone! I haven't posted on my own thread for awhile now but I have to ask a question. Ever since my pain has gotten so out of control in the last couple of years or so, I find that my jaw is clenched as tight as it can get ALL of the time. Even when I sleep. My jaw is so sore, my gums are sore, my entire face actually hurts because of this. I will notice it when I'm just relaxing and watching TV, and I have to force myself to unclench my jaw, to make it relax. Because of this, I have broken or cracked so many teeth it's ridiculous! I spend a lot of time at the dentist getting a new tooth crowned and it's certainly not cheap on top of the additional pain of a broken tooth. I've broke a few of my teeth all the way down to where the nerve is exposed. I even have to massage the lower area of my face and jawline. Does anyone else have this particular problem to contend with?
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