Experience with pain mgmt specialists?

Discussion in 'The Watercooler' started by flutterbee, Nov 3, 2008.

  1. flutterbee

    flutterbee Guest

    This is the direction we are going now. I have all of these specialists who agree I have a lot going on and they all seem to be scratching their heads. I really don't think I have anything exotic. I feel like whatever it is is screaming at them and they're just not seeing it. I sat in the doctor's office for an hour crying because I'm just so frustrated. My poor doctor feels so helpless and frustrated herself because she doesn't know what to do.

    Anyway, what should I expect? The doctor she is going try to get me into not only does pain management, but also tries to identify the source of the pain. Hopefully, I get in with this guy.

    She is still trying with the NIH. They got the return receipt from the post office that they received my info, but still no confirmation from the NIH. My GP said she is going to have Mona call everyday until she gets someone to call her back and basically light a fire under their you know what.

    If that's a no, we'll go from there. I told her I'm done going from specialist to specialist, especially since they don't communicate with each other...which is why she was really excited about the NIH program. She agrees and understands and is frustrated that I'm still just stuck hanging.

    I'm just nervous about pain mgmt. I guess that seems silly, but I just don't know what to expect. Don't get me wrong, I want better pain mgmt. I just...I don't know. It's just an unknown, I guess. Maybe, just maybe, they'll get the pain under control to where I can get some part of my life back? Is that too much to hope for?
  2. Sheila

    Sheila Moderator

    I can't answer your question, but this came out just tonight.

    I posted this in the Teen forum because our kids tend to get into trouble like a magnet -- in way over their heads before they know what hit them, but it might be a good idea to be cautious if a doctor rxed this cocktail.

    Hope you're successful in finding some help. I'm fortunate that I don't have chronic pain. About 3 days of a miagrane is all I can do. (real wuss here -- lol)
  3. crazymama30

    crazymama30 Active Member

    Heather, my husband suffers from chronic pain, and all they know is he has arthritis and inflammation. They do not really have an answer other than that. He has been seeing a pain doctor for the last 1 1/2 yrs or so. He is great. They do all kinds of injections, ablations, and give medications. For my husband percocet seems to help him the most. Morphine, dilaudid are both supposed to be stronger but do not help as much as the percocet. The only other thing that ever helped him much was Fentanyl, but that is very strong.

    My husband's pain is under better control. It is still there, but it is better. There were times he could barely walk, could not sit, and was a total bear. Now he can function fairly well most of the time. I really do not think anyone will every cure him, as much as I want it, but at least it is better.

    If you have been to many specialists I can see why you dread another one, but I hope this one can help you. Pain management docs are a good thing for those with chronic pain.
  4. flutterbee

    flutterbee Guest

    Thanks for the tip, Sheila!

    I only do a muscle relaxer when I'm having extreme muscle spasms which stopped when they took me off the diuretic that was causing my sodium to drop. I still get muscle spasms/cramps, but they're not generally too bad.

    I do take vicodin for pain, but try to keep it to one pill a day (5/500mg - which means 5mg vicodin, 500mg tylenol). I just take it during the part of the day that I need to be somewhat functional. When it gets really bad and I just can't stand it, I have taken 3 a day and on a few days I've taken 4. (The rx reads 1-2 every 4-6 hours for pain, but I never take 2 at a time.)

    I don't take xanax, but I do take klonopin for restless legs. I'm not sure if that's the same class, but they're both anti-anxiety. I only take .5mg and almost always only at night and I always wait for the pain medications to wear off before I take it.

    However, if I do get a doctor that tries to rx this combo, I will now know to run, not walk, from his office. I appreciate you passing that along. This is the kind of stuff I worry about. I want pain mgmt, but I don't want to be out of it.
  5. Lothlorien

    Lothlorien Active Member Staff Member

    Heather, since I work for a doctor that frequently deals with pain managemnt specialists, I have an idea about what goes on, but more importantly about what shouldn't go on. It's late, right now. I'll try to send you a pm in the morning regarding this.
  6. flutterbee

    flutterbee Guest

    I'd appreciate that, Loth.

    I think why I'm so nervous is because I don't have a diagnosis and I feel like if we get the pain under control they'll stop looking, but the disease process will still be going on, Know what I mean?? It's really just a band-aid until we know what's causing it which is why I like the idea of the doctor who also looks for the cause.

    I really don't want more drugs. Maybe a more effective drug if there's something that will help more than the vicodin, but doesn't make me out of it. But, I don't want a handful of drugs - on top of the gazillion medications I already take for other issues. I'm kind of hoping for more therapeutic type treatment. Maybe more steroid injections, specific exercises, PT...something. My friend who is an RN who works in hospice did say I should ask about a fentanyl patch.

    I have a Yoga DVD that is made for people for chronic pain and if I could ever get my son to show me how to work the DVD player without the remote - since someone lost it - I'll get to try it out. I also got a body healing CD that is supposed to somehow affect brainwaves to control pain. As kooky as it sounds, when I'm listening to it, my pain level is better - it really helps with my GERD, too. It goes right back up after the CD is over though. And as you have to listen to it with headphones, I can't very well go around listening to it all day.

    Crazymama - I've had morphine several times as that's what they give heart patients - whether you're complaining of significant pain or not - because it dilates the arteries in the heart. The last time I got it, every muscle in my body seized up. It was like having a charlie horse in your entire body. Not doing that again. I was on IV dilaudid for a couple of days after the angioplasty when I had the bleed and all it did was make me sleep. The percocet they gave me after they took me off the dilaudid worked better for the pain. Even if they did work, I wouldn't feel good at all about taking them on a regular basis. They're too powerful. They scare me. I'm glad your husband has gotten some relief. Sitting is ok for me - as long as I can sit Indian style and change positions a lot. I can barely make it to the mailbox and back and can't stand for more than a few minutes at a time. I sorted laundry last night and had to sit down and recuperate before I could put the clothes in the wash. I was sweating from the pain and could hardly move. It's incredibly frustrating.

    I was going somewhere else with this, too, but lost my train of thought and can't get it back.

    I appreciate the feedback. :D
  7. susiestar

    susiestar Roll With It

    While the three drugs ARE undeniably addicting, the risk of addiction when properly prescribed is very very low. I have done a LOT of research on this, mainly because I have had chronic pain issues since my teens (25 years now!). I take soma, have for years. Not all the time, not every day. If you take it only when you NEED it then your body may become DEPENDENT on it, but you will not actually be addicted to it. There is a HUGE difference.

    I have been on one pain medication or another all that time too. Yes, my body is dependent on it. I am NOT addicted. I have physical symptoms if I don't take the medications, but I do not get "high" from them. I am on the fentanyl patch. It is a wonderful solution as it gives you a steady dose of the medication, doesn't irritate the stomach, and works for 72 hours. There is not a higher level of medication after you swallow a pill and then a lower level when it wears off. You just slap a patch on and are in decent shape for 72 hours.

    I am not currently taking xanax, though I did for years. The ONLY time I took more than 1/2 of a .5 mg tablet was when Wiz was in the psychiatric hospital, and again as I went through the court ordeal after I had him removed. And those were times my psychiatrist wanted me to take MUCH more, though I didn't.

    One way you can tell if the medications are needed for you is if they simply make you more able to be YOU, to do the things you want and need to do. If they are making you high feeling, then they need to be switched.

    The problem with the medications is that they are often prescribed by docs who don't know what they are doing, and prescribed to people who don't need them. (I am NOT saying that you don't need them, Wynter, merely that they are not something to be afraid of in the shape you are in.)

    A pain mgmt doctor will want you to sign a contract saying you will only get your medications from him. They mean ALL medications should be rx'd by them. It is one way to make sure that people are not abusing the medications. Pain mgmt docs also do spinal blocks and epidurals to try to help get pain under control.

    I haven't been to one except for the one time before my neck surgery. The doctor gave me an epidural in my neck that was AWFUL, gave me that hideous 17 day migraine. He really really really tried his hardest to talk me into changing to him as my doctor, but I explained that his practice had already told me I am not in enough pain, and have not been in pain long enough to see him. (He was FLOORED.) I also told him his front office people were the rudest I had experienced in a long time. He looked ashamed.

    I hope a pain mgmt doctor can get to the root of what is going on with you. But, by the very nature of what they are treating, they regularly prescribe medications that are considered addictive, or at high risk of addiction. That is why they have the contracts. Don't necessarily run from a doctor who wants to prescribe one of the medications on that list. They may be the medication you need to break the cycle, or to get things under control.
  8. flutterbee

    flutterbee Guest

    Susie, I understand what you mean about the difference between addiction and dependence. I like how Janet describes it best. She said, "Well, I'm dependent on oxygen, too." Isn't that a great way to explain it?

    It's not that I'm opposed to medications, it's just that I want to have other options, too. I don't want medications to be the only things that are tried or prescribed.
  9. SRL

    SRL Active Member

    Have you tried accupuncture? My uncle had very serious back pain and he tried about everything under the sun and finally found relief through this route.

    How about biofeedback training?
  10. susiestar

    susiestar Roll With It

    I had forgotten Janet putting it that way. I like that too.

    There are a LOT of things that can be done. The GOOD pain management docs will offer a lot more than just medications. The one doctor that I saw SAID that they had more, but as his office said I wasn't in enough pain, and hadn't been in pain long enough (with 20 years of records delivered to them!!), I didn't see him again. Just for that one shot. And the staff was awful when I called about problems with that.

    I hoep you get a good pain mgmt doctor who can get you into physical therapy, acupuncture, and many other thigns that help you. And I also hope they are not "pill mills".
  11. Heather,

    I would say to tread very, very carefully in this area. I completely agree with Lothlorien's statement. I have also learned what "shouldn't go on".

    Pain management treatment is one of the most highly litigated areas in my field right now. Most of my clients are in treatment with one of 12 pain docs in our city - the majority with three. The insurers like one of the docs, the claimant's attorneys like the other two. (I guess you can guess who is conservative, and who isn't). However, after watching all of these stories play out after many years I'm really not sure where I stand.

    I think that the most important thing that you can do is interview the doctor. Seriously. What is their philosophy of treatment, and what would their goals be for you? Do their goals match yours? Are they open to alternative treatments - such as massage and acupuncture? My favorite pain doctor went to China to study acupuncture. He's a busy neurologist - but he performs the treatments himself. His patients swear by him!

    Your secretary of state should have a web site that lists docs - and any complaints that may have been made about them (as well as lawsuits). Check that out carefully. One of the most popular pain docs in our community was charged with Medicare fraud 12 years ago... it was 12 years ago.... but....

    Pain relief is vital, but so is the patient's ability to function. It's really a very delicate balance. Just the right mix of pain treatment can improve a person's daily functioning. Too much pain treatment can destroy a person's daily functioning. You've got to hit the right mix, and the target keeps moving. I'm a huge fan of physical therapy as well; and I have great respect for physical therapists. The good ones really know their stuff . Pain management docs should include physical therapy in the mix, and encourage their patients to work out - be it in the water or on the land.

    Good luck in your search. You are such a thoughtful lady, I know that you will consider all of the options!
    Last edited: Nov 4, 2008
  12. Marguerite

    Marguerite Active Member

    husband & I are both under the care of a pain management specialist. He practices out of a palliative care clinic so we share the waiting room often with terminal cancer patients, but I'm used to that now.

    A good pain specialist should look at all methods of pain management, including non-drug options. It was a pain clinic that got me onto trying TENS.

    I didn't have to sign a contract about my medications, but our system is set up so if I began shopping around to get more medications, it would soon catch up to me and it would show up on the national database. If I lose my medications while on holiday, for example, I can get a few days' supply but no more. It would be enough to get back to my doctor and sort out the problem. And losing my medications too often would also raise eyebrows.

    A pain specialist should also be able to take past allergy problems into account and find ways around problems as well as be the first one to try new pain managements.

    Don't be scared of it, Heather. Nobody can force you to do something you don't want. And who knows? He might be able to help!

  13. Lothlorien

    Lothlorien Active Member Staff Member

    I sent you a pm, regarding this.
  14. Star*

    Star* call 911........call 911

    Wynter -

    Don't (whatever you do) get discouraged and quit! Keep trodging on for your answers.

    DF has been seeing a pain management doctor for around 6 years. They tried everything they could to help him. We feel after MRI's, and the like- all the doctors are saying "But he SHOULD feel better." Yet he does not, nor is it likely he ever will. He takes a lot of methadone a day and sleeps a good bit more. Conversations are lacking.

    When he told them the methadone was not working (neural receptor blocker) they suggested a Morphine pump. He refused as Morphine - well anyway - I just wanted to encourage you to seek and seek - someone out there will have an answer soon -

    Don't you wish Dr. House was real? I'd sell my beanies to get you there!

    Hugs & Hugs.....
  15. flutterbee

    flutterbee Guest

    Thank you for all the advice and feedback. I firmly believe knowledge is power and if I go into a place and don't know what to expect, I'm highly anxious and - believe it or not with as outspoken as I am - I become very meek.

    My GP knows this guy she's hoping to get me into and she really likes him. I trust her judgment. And since she knows him, I'm hoping there will be a lot more communication back and forth than we've had with the other specialists.

    My concern is functionality. I don't need the pain to be erased. Just at a lower level so I can function. If I'm out of it, there really is no point in having pain mgmt. It would serve no useful purpose for me. And that's my concern. I want to make sure that we try every other available option that may be helpful and not just medications. medications, for example, are not going to help with range of motion.

    SRL, to answer your question I have not had acupuncture. My insurance doesn't cover it and I can't afford it out of pocket right now. I've been wanting to try it, though. I've heard a lot of good things about it.