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*HELP* advice please! WHY is the PM Dr. not listening and giving me enough for pain?!?!

Leamomof3LLeamomof3 Posts: 22
edited 06/11/2012 - 7:46 AM in Pain Management
This is my 2nd PM Dr. Loved my first one, but they just weren't listening to me. They gave me Tramadol and said that should do the trick. It doesn't even touch it for more than an hour. I go again on Friday and would like some advice on what I can do to get them to understand my pain level & concerns.

My fiance and I have even split up after 7 years because he says " I'm about as fun as a wet noodle" I'm irritable all the time and I know I'm no fun. But how can you be when the pain consumes you? I just want relief. I know I'm not going to be 100%, probably ever again. But I'd like to at least be tolerable of the pain enough to bring me back to life again. Regardless, I'll never go back to the ex. If he's not going to be there with me through this, then I can only imagine what type of burden I would be if something more serious would happen.

2nd Dr. has given me Oxycodone, but I told him how well the ER worked for me.... 20mg's, 2-3x a day. The oxy works well with the Tramadol, but only for a few hours (3 tops). He told me to alternate. Take a Tramadol, then my next dosage take an Oxy, etc.., etc... That didn't work so I was taking a Tramadol WITH 1 1/2 Oxy every 4 hours.

How do I make them understand I want longterm relief with a breakthrough med? I DO work and I need to be able to continue doing so. But this pain every single day is waring me down. I don't get much sleep (due to pain), and then I come and work for 8 hours.

AxiaLIF Procedure done in Oct. 2009, no relief & in worse pain than ever.
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Comments

  • Maybe it's your emotions I am getting here, but my guess is this. If you approach the PM or any doctor with 'drug' ideas, right off you red flag yourself as a drug seeker.

    Me? I would try to get the doctor to sit down where I could give details on what "kind" of pain (muscle, spasm, nerve etc.) and where. What pain is constant, what it feels like when you flare etc. Then let them make suggestions. If they bring up a drug *you know* does not work for you, then state it, but don't tell them what you need - they will shut down on you! Good luck with it!!

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • We've had a long talk.

    He also says he likes the fact that I'm working in which this shows him I DO want to get better.

    I also do my exercises that I learned in PT every evening, I have a TENS Unit, and I ice daily.

    My concern is, is this as good as it gets? Am I ever going to be able to sit down, get up, walk, lift my leg to the brake, lift my leg to get in the shower,etc..without having pain that takes my breath away? I would just like it to be managed, if anything else, that's all I ask.

    There are people far worse off than myself. I can work, while painful, at least I'm able to at this point.
  • You wrote in another post that you told your doctor you didn't have time for physical therapy.

    So what I get is that you want some hard core drugs but you have kids at home and can't make time for physical therapy. Didn't you say that your doctor walked out on you?

    In general, with schedule II drugs, you don't tell your doctor what you want. Your doctor decides whether you are a candidate for schedule II drugs based on many guidelines, one of them being as Avi stated whether you are a seeker. So you go in, let the doctor review your records and see what he thinks you need.

    Usually doctors will start on the lowest dose and go up until you find relief.

    If you hop from doctor to doctor rather than letting the process take its course, it will take even longer!
  • Howdy Lea,

    I am one of those that so far hasn't gotten better, and it caused me to retire earlier than I had planned or wanted too! I wish I had a crystal ball for the future, cause like you, I too ask the question as to whether it will get better, stay the same, or of course, get worse!

    I see you 'aren't fusing'- what is your surgeon saying concerning it? I finally started fusing on my last level only to have the vertebra between the fusions crack - and now yummy, have most of my C5/6/7 add 8 symptoms back! I hit a year tomorrow. My surgeon gives it a year to see if fusion starts. If he doesn't see it, then future surgery is offered *if* symptomatic or testing shows damage possible! He is 'concerned' about my crack, but watching it - he feels it may fuse on its own. *sigh*

    Have you by chance asked your surgeon too if he can recommend to your PM alternative medications to try? Are you on any nerve pain meds (Lyrica, Neurotrin etc.)? I agree with what you've posted, you can't do much more on your own to help yourself - most won't do half of what you are. :) I was the same way, if my PT gave me homework, I did it religiously!

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Happy~

    No, I can't do the PT that he wants me to do. I wish I could, but due to my work, I can't. First off, I won't get paid for those 2-3 days a week with 35 minute drives each way. Secondly, I will lose my job. He's got 3 offices in 3 different locations.

    This pm has another office RIGHT HERE next to my work literally 30 seconds away. (This is where I go again on Friday) I can even see it from my parking lot. He WILL NOT give me therapy there because the people that do the Yoga, Martial Arts, etc. that he likes to incorporate into the pain mang. process are only at the one 35 minutes away. Am I going to lose my job over this? NO, I will NOT. His asst. even got upset how he walked out on me and told me these are things I can do at home. He was upset because unless I go to the office that's 35 minutes away to do the pt there, he won't get paid for it. Does that make sense?

    I do my PT every night (that my pt after surgery taught me) at home and a few in the morning.(Usually my YOGA stretches) I am faithful to these along with walking each evening. Granted, it's not much of a walk but I do get out and get some exercise. I also get a massage 1x a month. I wish I could afford to do it every week, but I can't.

    Who said anything about hardcore drugs? He asked me what worked, i told him what worked and what didn't. I would just like something that works? Geez I guess maybe I don't know much but I thought this was a forum for support, not picking apart someones pain/lifestyle & choice of words on a forum.

    I don't have a 2nd income in my life. It's all ME. No man, no food stamps, no medical assistance. ME. I have to work and I need every penny I make. There is no reason I can't be taught the physical therapy. NONE. So, excuse me for wanting to make sure I get paid AND asking for advice/support to get my pain under control so that I CAN provide for my family.

  • Any extended release narcotic is getting into "hardcore drugs" as far as I'm concerned. I take them, so I'm not saying that in a judgemental way- just in a "you're stepping across a line" sort of way.

    My comment was simply that you don't seem to be at a place to discuss this with this doctor at this time. Does he really only do PT in-house? I've never heard of that. Does your insurance allow him to do that? You might call them and ask whether he can under his contract or whether he has to allow you to choose any local PT. I know that PTs have to fight really hard for their contracts with different insurance companies, they might be annoyed to find that their territory is being impeded upon.

  • I do believe in another few months (once it's been a year) they're going to do another scan to see if I've fused. Doesn't look good so far, it's done nothing at all. My question about that is: Does that cause pain? I mean, the not fusing.. is there something about that that would be causing this? That's something I will ask my PM on Friday. I just found out 2 weeks ago that I haven't fused. ( My chiro took pics for me and showed me the everything.)

    What caused your issues that you had surgery on? Mine was a fall about 5 years ago that started the downward spiral.. lol I do try to be optimistic most of the time. It's all just so frustrating.

    GULP! I am so sorry about all your symptoms returning. What the heck are they doing for you to keep it manageable? See I hear your story and I think what in the world am I complaining about. Hugs to you!

    I did do the Neorntin & Lyrica, but neither of them agreed with me. They made me way to sleepy. Even the lowest dose they started me out on. It was nice to sleep, but I can't sleep my life away.. lol

    Hang in there!
  • Sorry I didn't mean to get snappy and I apologize. Again it just shows my frustration and tihs so isn't like me.

    Yes, he does have only in-house. Or should I say the Extensive Physical Therapy that he wanted me to take which included Yoga & Martial Arts. And I think that's great and would absolutely love to be able to do that. Unfortunately I can't and sure wish he would have someone teach me these to do at home. While I do some already, it certainly isn't going to hurt to do more. Also, he did do something that he called "accupuncture nerve black". He called it this because otherwise the insurance won't pay for it. That's when I realized, after he walked out, that he wants me to do the OT so bad from the other office because then he'll get insurance to pay for it.

    My previous pain clinic has only that, a clinic. Then they had a completely seperate office off of the hospital for PT. Which is where I learned my current exercises from. I went there for 1 1/2 months then had to start doing them from home to prepare for my journey back to work. They were perfectly fine with that. Didn't want me going back to work, they said I needed lots more time to heal, but I had only planned on being off for a month. And that was after my surgeon had told me " 2 weeks tops and you'll be back to work". I played it safe and told them I'd be gone 4 weeks. You know, I thought about calling my "nurse" through my insurance company. She's kind of a case nurse and she's the one I talk to about anything to do with my back. Might be something I need to ask her, for sure.

    I guess I didn't realize that what was working for me, and what I told him worked for me was considered "hard core". I think of hard core as Methadone, Morphine patches..stuff like that. I'm sure the longer I'm in this predicament the more I'll learn about all these things.

    Again, I'm sorry for being snappy. I was so glad when I found this forum and could see all the people who, unfortunately, are dealing with chronic pain, flawed surgeries, etc.. I know I'm not alone and strangely enough in this situation, that does bring comfort.
  • What is it that you take?

    Is it helping? Are you managing the pain? Can you at least smile and enjoy things for the most part?
  • Howdy Lea, :)

    If there is movement in the area that hasn't fused, that is possibly the 'generator' for your pain. My crack moves (the bone) sideways and fore and aft a bit (my ENT told me), and it changes the pressures on the exit nerves, and as such a lot of my symptoms came back. It could be you have a bit of movement, it could be some scar tissue growing (grown) in there, or a little piece of disk still in there (they don't always take *all* of it out)...lots of things can cause that. My surgeon is waiting to see if it self corrects (fuses) on its own. Yummy...

    I crashed a helicopter 26 years ago, and back then of course, no MRI (though not sure if much would have shown then?) just X-rays. I was told I "sprained my back but good!" From the base of the skull right to the tail bone; but more so the neck, mid thoracic and upper lumbar. Those now are the areas that are failing me. If you ever see the old piston helicopter pilots, you'll see we sit a bit curled forward, so picture about 6g's down, then immediately out sideways and then spun 180 degrees from a speed of about 70mph. What was left of the helicopter, the NTSB investigator was surprised I was walking never mind alive! (G) Guess it wasn't my time!!!

    Pain management so far for me has been Lyrica (300mg a day) and Darvocet. About 85% of my pain is nerve, and I am so amazed at how well Lyrica controls it for me! Darvocet I take infrequently as it makes me so sleepy, and that kind of fubars a day! (G) I have a pool now, so I do aqua therapy and at times I just float to take a 'spine break' if you will. Ice and me also get along pretty good. Now I have a Tempur Pedic bed, so that helps decompress as well. :) By the way, on my first week of Lyrica, I got buzzy and sleepy with it, then that passed. I guess it has to build up in our bodies, or we become tolerant? Thanks very much for the hugs. :) I think it's all perspective as well all have different things going on, different ages, different pain - all stinks no matter how you get it! *HUGZ* back to ya!!!

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • You're not alone. I responded to your other post, but didn't realize that your doctor only does therapy in-house. I do understand you wanted to be treated with pain medications so that your pain is under-control.

    Personally, I don't like to call any of the pain medications "hard core," because there is such a stigma already with these medications and I feel that term further stigmatizes them. It actually bothers me a bit...but to each his/her own.

    When you see your doctor, tell him your concerns. Tell him that your pain is not controlled, and see what he says. It is your health, but you can't lose your job because of therapy.

    I'm sorry that you're going through all of this. I know that it's hard when you have a lot of pain. I know that it's hard to smile, but sometimes it takes time to get to the point where you can function. There's a lot of trial and error in PM, and there are many different treatments to try that can help. The idea is to have an arsenal of techniques that (put together) will help you to tolerate your pain.

    Hugs,

    Flower
  • First and foremost, honesty is always the best way to approach your doc. So with that in mind, why not tell your doc exactly what you wrote in the first couple of posts here? Things like; your pain is not controlled well, your situation has cost you a relationship, your pain effects your job, you want to do PT but the chosen location is job prohibitive, you do the PT you were taught earlier at home, you just can't function well ... lay your cards out on the table and see what happens. The worst thing that could happen is you leave and are still in the same boat you are now. Possibly though you can re-establish a good relationship with this doc and he helps you out.

    Is there some other reason behind not wanting you to do PT near your job? Since you can't/won't do it at the other place, then in essence you aren't doing it. So wouldn't something from the place near work be better than you not doing any supervised PT what-so-ever?

    One thing to keep in mind about these forums. When you write something, it tends to have a specific meaning to you and an outsider can look at it and see patterns or behaviors that you yourself can't always see because you're too close to it. Have you ever heard about the power and the magic that occurs when putting pen to paper? Writing things out forces us to take a second look. Many times what we think is happening, isn't and what we think something looks like, it doesn't.

    Were I in your shoes tonight, I would sit down and write everything out. I'd make a list of questions that I want to ask the doc. I'd also make a list of concerns that I need to pass on to the doc I'd track my daily pain to include blood pressure and pulse (if you have the capability). Preparation is the key to a good PM appointment.

    I wish you luck.

    "C"
  • Good morning and thanks so much for understanding.

    I have been journaling since Feb. of my day to day life. I thought it was a good idea to have on hand when visiting with the Dr.'s.

    Yea, I don't consider what I take to be hardcore or what works for me to be either. It sure doesn't make me feel like I'm taking hard drugs. It just makes me able to tolerate the pain. I can still function and work no problem.

    Perhaps this tomorrow I can go over some more things with him. He's foreign so I think some of the things I talk to him about he has a hard time understanding.. lol AND, some of the things he says to me I have to ask him a few times what he said. He is a very nice guy, but that walking out on me was unprofessional. Maybe he was just having a bad day. If he does it again, I will ask to be referred to a different pm. It's been so nice to be so close to home & work with this pm clinic. I live in a town of 6,000 so to have one this close is awesome. All the others ones are 35 minutes away in the big cities.

    Thanks for your support flower and I wish you a good day!!
  • I couldn't agree more re: the PT closer to home. Again, he says it's because the people who "teach" the PT are not available in this office by my home. So, like my other clinic of PT, can't they give me the hard copies of the exercises to learn? I already do Yoga (and he knows this) so it's not like they'll give me something I won't know how to do. I'm more than willing to learn any new exercises that emphasize on my lower back/leg/hip pain.But I'm not willing to lose my job over it. If I can't do it from home, or in this office here, then I there is nothing I can do about it.

    I've always tried to be prepared when going to speak with the Dr.'s hence why I started keeping a journal. I do my best to explain. And like I told the nurse, I'm sure my pain is higher on the pain scale, but I've become so accustomed to living this way day to day, I probably don't rate it high enough?

    Thanks for your support and advice, it is greatly appreciated. I AM going to use your advice about taking my words from my first few posts and logging it into my journal. I've not spoke to him since my fiance & I split, so I will certainly ahve a few more things to tell him about.

    Again, thank you & wishing you a good day :)

  • Holy he.ll Brenda, you are so lucky to still be here with us!! What a horrible accident. Yes I'm sure back then the options of any type of relief were slim to none. You're a tough cookie!

    I guess time will tell with this fusing.You know, it's not that I don't believe them when they say everything is in place. It just boggles me how one could be in so much pain but yet the pictures show stability? Of course, I was also told that they should ALWAYS ALWAYS do a scan with dye, and then another without. I am going to bring this up in Oct. when I go for my 1 year "anniversay" catscan. I've only had a catscan 3 months postop, and it was withought.

    I am so happy that you have been able to get something that works for you. That is wonderful news! I hope I can get the same one of these days :) And I'm sure my family & friends hope for the same thing =P I don't even realize anymore when I'm being irritable and snappy, but they have no problems bring it to my attention. And, I'm glad they do and I don't mean to be that way towards any one. Unless it's been provoked, of course. How long before you were able to find the right cocktail to get it under control for you? Did you try many different meds?

    Now that you've been able to get it managed, are y ou able to do certain things now that the pain isn't as bad? Not meaning jogging, running etc... lol just meaning somewhat of a normal life and being able to enjoy some living?

    Hugs again and don't forget to smile!

    LeAnne
  • But you can ask if he'll refer you out to something closer and more convenient. I mean, it would be nice to have yoga and martial arts, but that's not what it's about- it's about feeling better!



  • Lea,

    Yeah, the engine quit at the wrong time! (scratching my head - is there a right time? ) What's funny is that even though I 'saw it coming', didn't feel a thing at impact. How weird is that? All I know is that day I decided that when it is 'my time to go' it is like that...fast, no pain, no warning, done! (G)

    I was pretty lucky in my 'meds' path if you will. Morphine for short bursts in the beginning and Percocet for the rest. But when I started getting megga headaches (attributed to my C2/3), and most of my symptoms back, my NS (who handles my pain meds still) gave me Darvocet for the headaches, and put my on Lyrica. After reading all the side effects of Lyrica, I almost didn't take it! Within days I saw a marked improvement!! It was literally like night and day! My headaches would get so bad I would literally throw up or pass out if I stood up! I found that one of the triggers was eating 'normal' sized bites of food! I eat foods now cut into sizes no bigger than a Dentyne gum size, and they are much reduced. The other night I had spaghetti, and had some big mouthfuls...yep, I paid dearly for that! (G) So my 'mix' now is simple, Lyrica and Darvocet, and too Aspirin.

    My activities are still very much restricted, and in part on my decision. I have found *some* of what activities cause me major pain for days, and therefore avoid them. Never been a runner, so that was easy. (G) Could not come off light duty status for my job (pilot/law enforcement), so had to retire. Instead of getting bummed over things I couldn't do anymore (use to LOVE wall climbing for instance), I found new fun activities. I finally got a pool after a zillion years, gives me relief, exercise, and hubby time! Got a Bowflex tread climber, so I can get some quality leg/cardio, but can do it in pieces vs try to walk outside and start to hurt, but not near home - you know that drill!

    As for grumpy modes, yep, get them myself, and my hubby isn't shy on letting me know when my mean twin is out! (G) Fortunately we have really good lines of communication and trust, so he "many" times knows when she is coming out vs little ole me! As for friends, most of mine are from 'the job', and therefore know I am achy / breaky...so they aren't pains (no pun intended) when I say no thanks to things, or get snappy if they forget and try to get me to do something they know I can't,...but once loved!

    I hope you're having a much better day today!!! *HUG*

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Lea I have encountered the same problem with several of my doctors. They want me to do PT but they want it at their office. I usually tell them no because most are a half hour away and I have an awesome PT who is a mile from my house.

    Last summer I gave in to my neurologist because there was no progress being made at my local PT. So I went to his office directly from work twice a week. It was a joke compared to my regular PT. They were primarily a brain injury PT so most of the patients were 70+ with alzheimers or other brain conditions. The routine was a joke. After about two months the doctor agreed to do other tests.

    On another occasion the same doctor had me go to his MRI facility in-house. Again not my first choice but he was pretty insistent. Well the reading was way off as another radiologist showed.

    My feeling is that doctors should be doctors and let other professions handle their specialties. When you cross them it raises the question of is the doctor ordering what is right for you or are they just ordering tests or PT because they need to keep their other business going? This conflict of interest should not exist.

    Now I'm not saying all doctors are operating under ulterior motives at all times. But in my experience it is better to go to an independent office for tests or therapies.
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