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Old 01-13-2010, 01:11 PM   #1
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Communicate with Doctors To Get Best Treatment

I am begging and I am desperate for help) read this entire message and respond with your advice. I will appreciate your comments more than you will ever know!

Please, please, please respond! I really need to know how do you communicate with your doctors to get the best treatment plan for you? How long have you been going to Pain Management Clinic or have seen a Pain Management Doctor? I really need sound advice from you so that I can communicate with my doctor and get put on a treatment plan that allows me to get out of bed. My life was so active before my pain got in the way. My life was active and exciting. Now all I can think about is the pain and all day I think about how to get a treatment plan that will allow me to get back a little bit of my life. Again, please please (I am begging and I am desperate for help) read this entire message and respond with your advice. I will appreciate your comments more than you will ever know! Your advice and help will give me strength during this very dark and painful time in my life. I feel like I am a failure as a mother because I cannot get out of bed, a failure as a wife, and a failure getting the correct medical care. Please let me know how you do everything and how you tell your doctors that you need a treatment plan that will allow you to get out of bed and hopefully regain a portion of your exciting active fulfilling life. My chronic pain has cost me so much physically and emotionally. I really need to have guidance from you so that I can get help which I want more than anything. I want to be a mother, a wife, and have a life. I am begging you please read this entire post and respond with your advice. I have read this board and everyone seems to be so together and knows what they are doing. I do not. I feel out of my league on this board. I hope I am not getting on anyones nerves but I am so desperate and I hurt mentally and physically. Online is the only place I can reach out. I am not mobile and cannot attend a chronic pain support group. I am really depending on you and will be forever grateful for advice.

How do you describe your pain to your doctor? Do you ever feel ashamed of you pain. I do! I get embarrassed and cannot speak. I get too nervous to speak. I have been going to my pain management clinic for five months to treat a club foot and tumor. Right now the pain is so severe I cannot get out of bed. I have a young son and a husband. I feel like such a failure to my family. I feel like such a failure because I cannot communicate with the Pain Management People. At the clinic, I feel judged and as though I am doing something wrong. I really hate going there, but, I am dependent because I do want to get a point where I can get out of bed.

What has been the most effective way to get the correct treatment plan for you? Do you ever write your doctor notes describing your pain?

I am not used to my Pain Management Life. i am not used to my life with severe, crippling, chronic pain that has left me bedridden. I used to be so active. In fact, I was an Olympic Athlete. My severe pain and being dependent on the Pain Management Clinic to help me resume any type of normal life has left me feeling worthless, pathetic, and uneasy. I really cannot believe that this is my life. I hate more than anything being at the mercy of The Pain Management Clinic to treat me. They make me feel like I am a drug user. I have been told that people fake injuries just to get meds. However, I have a tumor and a club foot. This is something that cannot be fakes. When I go to The Pain Management Clinic I get so anxious, nervous, and sick to my stomach because I feel as though I am being judged. I feel as though the pain management people look at me as a pathetic person. I have cried during my appointments because of the pain and because I feel as though I am being judged (it really hurts my feelings). Then I feel dumb and embarrassed for crying during my appointments. I wish I had a miracle and the pain and tumor would disappear. I do not know if I will get used to PM life. I am seeing a psychiatrist that is in the office of the Pain Management Clinic I go to. I understand all the rules and guidelines that the PM Clinic has to follow, especially when there are people that fake injuries to get meds. In my case, and I am certain most people writing on this board, my problems are obvious. A club foot and tumor cannot be faked. My quality of life has really gone down hill. I have a young son and a husband. I feel as though my disability diminishes their enjoyment of life. I can't do anything because of the pain and it is so difficult to accept. My hope is that the Pain Management Clinic will be able to treat me so that I can get out of bed. I have been going since August. So far I have been given 30 hydrocodone for thirty days. This is less hydrocodone than my PCP used to prescribe to me. I switched to the PM Clinic with the hope and dream that they would be able to give me meds that allowed me to get out of bed. My ortho doctor wrote a letter to the PM Clinic saying that his recommended course of actions would be a strong narcotic taken 2-3 times a day and then something else for break thru pain. I know that I have not been able to express myself to the PM Clinic workers. My next appointment will be with the doctor. I hope that by time I am confident to talk to him and get a good treatment plan going. Patients of the PM clinic are only supposed to see the doctor one time a year. However, after my last visit I told them that I needed to see the doctor. The crippling pain and everything that I cannot do has lowered my self esteem and self worth. I have not been able to talk to the PM people because I get too nervous. I say things such as "the hydrocodone works sometimes." It does not, but, I am too afraid to say the truth. I am too afraid because the PM Clinic has emphasized people faking injuries just to get meds. I do not want to be seen as one of those people. I do not know why I was told this because as I stated earlier my problems a club foot and tumor would be impossible to fake. I have MRIs twice a year. Any advice would be greatly appreciated! Thank you very much!

 
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Old 01-13-2010, 02:57 PM   #2
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Re: Communicate with Doctors To Get Best Treatment

Dear Vick,
IMHO, the best way to communicate to the doctors is to keep a pain journal. I used a plain old notebook and made colums with the following information, date, time, pain level (on a scale of one to ten), type of pain, location of pain and activity level (or activity). I've found out that the more hard data I have the better the doctor can help me. The doctor can look for patterns and come up with a long range plan, which is then tweaked on a monthly basis. I also found that it helped me to identify patterns. It's also very helpful with my specialists. In my case it's TMJ and I take the journal with me to my doctors.
Also having the information in writing will help you with your shyness issues. Another tip I have is to take someone with you to the appointments. Perhaps there's a relative or close friend who can help advocate for you. In addition to helping you speak up another person will hear what the doctor says, and can help you carry out your treatment plan.
I know that pain can be debilitating, but I'm also proof that with the proper treatment you can return to being a productive member of society, and be the person you want to be.
I worked full time while on some heavy hitting meds. The doctors found the right balance of meds that addressed the pain while allowing me to function. The biggest concession I made is that most days I didn't drive, I carpooled. Luckily, my husband and I work together so I have a built in carpool buddy. He and I teach at the same school. Life is good.
Hang in there, use the tips that you get from this message board, and you'll be back on track in no time.
Peggy

 
Old 01-13-2010, 06:12 PM   #3
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Re: Communicate with Doctors To Get Best Treatment

Vick,
They are not treating the club foot, they don't see that, and they aren't treating a benign tumor. They are treating the pain levels that you say that you have. That is something they can not see. They go by what you tell them.
Begging, pleading, crying, doesn't matter there. They have seen that a 1000 and one times.
The doctor can only go by what you tell him. If the medication works and you tell them that, they will think they have you on the right dose and the right med.
If it does not work, and you tell them that, they will look at other options. Getting a treatment plan in place, takes time. It is not done in a few short visits. It is trial and error. No one here can tell you what to say to the doctor or the rest of the staff because we don't experience your pain.
I am surprised that you have to stay in bed all day. I have two failed back surgeries and a spinal cord injury and I don't do that.
Can the ortho surgeon remove the benign tumor? I have read about them and seem to recall that there is some type of surgery they can do.
And as for the club foot, have you been seen by an orthotist? One who makes orthotics to help keep your foot in alignment?
These may be options for the pain management doctor to consider in your treatment.
I suspect that there is a large component of depression in your situation that is contributing to your increased pain levels. So it is good that they have you being seen by the physchiatrist there. It may help alot in helping you learn to cope.
Best wishes,
Back

 
Old 01-13-2010, 10:47 PM   #4
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Re: Communicate with Doctors To Get Best Treatment

What you are experiencing re: your relationship (or lack thereof) is very normal and happens to a great deal of people. You have a great situation going for you that most do not have.....And that is a firm recommendation and evaluation by a specialist, your orthopedic. Not only is he the foremost expert in the area involving your pain, but by virtue of you being referred to PM, your situation is immediate legitimized. Thus, you cannot compare your situation in any shape, way or form, to most other people.

Conversely, most people end up at PM because they've complained of some type of pain via their GPs and at some point, either the family Doc can't treat it any more, or won't (not comfortable doing so). Additionally, most suspicious PM patients are those who don't really have any conclusive diagnosis or condition. For example, their back hurts but nothing really shows up on scans. Or someone says they have Fibro, and by the sheer nature of the condition, there really isn't any testing that can be done. I am in no way minimizing people with these conditions, but just giving you some real life examples.

The other thing you have to keep in mind is that although there are "stories" out there of negative PM situations...Fakers, abusers, and etc....They are by far the minority. In fact, not only are the vast majority of people in PM, good honest patients, but the few stories that happen, get lots of airplay because they are juicy topics. In no way do they represent anywhere near what normally goes on in PM. So, my point is to not let a few bad apples spoil the lot.

For example, my PM has a very large practice....About 2,000 patients. I've gotten to know him very well over the last 10 years and he told me once that he has to dismiss a couple of people per month. So if a "couple" represents an average of 3, then yearly, he dismisses 36-40 patients. While that may seem like a lot, it's only 1-2% of his patients overall. While I'm sure there are some juicy stories involving those 30-40 patients, no one talks about the other 1,960-1,970. That's issue # 1.

Secondly, in your situation, you've been referred to PM by an orthopedic, who is the foremost expert in your type of condition. The only reason the Ortho isn't treating you moving forward is because PM isn't his area of expertise. PM is much more than about prescribing meds....It involves tolerance and stability, and over time, most good PMs will rotate patients among a couple different narcotics in order to effectively manage their situation. I am very surprised that your PM didn't follow the Ortho's recommendation, at least initially. Was this because you didn't represent yourself correctly or because they elected to do something different? Normally, one gets referred to a PM because the GP can't control the pain anymore, or isn't comfortable with higher amts. I would tell the Doc that you were referred to PM because they couldn't adequately control the pain and now, you're getting less meds so you are even worse. If your PM Doc doesn't respond accordingly, I'd either be looking for a new PM, or see if your GP could take you back and then discontinue your contract with your PM (but talk to your GP first).

Not all PMs are the same, but because PMs deal with narcotics every day and is their main tool in fighting CP, they typically aren't afraid to prescribe heavier meds, or higher doses. Some of the doses I've seen or heard of are incredible....Places regular Docs would never go, but to PMs, it's fairly routine.

Your apprehensiveness is normal. But, as Backhurtz said, the PM Doc can't help you if you're not honest with him. You have to be your own advocate. It is critical. Because your condition is very legitimate and you're coming to the practice in a very professional, legitimate manner, you have nothing to worry about. Your only issue will be if your under represent yourself. And if that happens, then you will bear the unnecessary consequences.

In terms of your "goals" or what you are looking to get out of PM, should be exactly what you wrote in your post. I would be very honest with the PM Doc...Tell him what you wrote here.....Tell him your goal is to be able to get out of bed each day and enjoy life with your child. Tell him what struggles you have on a daily basis. Give him examples of certain tasks, whatever they may be. If he asks you to "rate" your pain, be honest and don't sell yourself short. Most PM's rate pain on a 10 point scale...With zero being no pain and 10 being the worst pain one could imagine. Most Pms will tell patients that their "goal" is to get pain down to a manageable level....Say a 5. It's probably unlikely and unrealistic to think one can have no pain. Actually, it's possible, but you'd be so sedated, you couldn't enjoy life.

Many PMers make the mistake of under rating their pain. What a # means to them, may mean something else to a Doc. For example, if 10 is the worst pain one can imagine, then 9 would be post surgical pain or very serious, debilitating type pain. 8 would be really bad pain...Probably causing one to miss work or school. 7 would be very bothersome pain...May miss work, but if they did attend, it would be obvious to all that something is wrong. 6 would be pain that prevents certain activities, but not all that bad in terms of missing work, school and etc. 5 would be pain that is constantly present, but one can function and do limited activities....This is what one should strive for, according to many PM specialists. Anything below a 5, many PMs will say that you shouldn't be in PM.

So, just beware of this scale if you're asked to rate your pain. Once you talk about the scale, you may ask the Doc what his expectation is for his patients....What # or range is a realistic expectation? Many PMers with daily chronic pain are typically in the 7 range fairly regularly, with upticks to 8 or what they call "break through" pain. I call break through pain a "flare up." I've only had a 10 once or twice and I about wanted to die...Literally. I've had some 9s and they are very debilitating.

Lastly, a great way to talk to a Doc re: specific meds, treatments and etc. is to throw other medical professional opinions out there as a way to legitimize the topic, or your position. For instance, if you'd like to try Oxycontin, you don't want to say "I think I'd like to try Oxycontin" but rather "In talking with my ortho, he suggested Oxycontin. is this something you'd also recommend"? Or, "I was talking to my pharmacist, and he recommended .........". As a general rule, Docs (not just PMs) usually don't like it when someone says "I was reading on line about this med and ........". Even worse is when someone says "I was on a message board and this one lady said........." Not good.

A big part of PM is communication, so hopefully this post have you some basic tips. In fact, there are two very recent threads on this very topic:
  • "Re: This one might just be for the ladies (odd ?)"
http://www.healthboards.com/boards/showthread.php?t=729901

  • "Re: Need advice on new medication regimen"
http://www.healthboards.com/boards/showthread.php?t=730795


Best of luck at your appointment....I'm sure it will go well. Please let me know if I can help further.

Regards,

Ex

Last edited by Executor; 01-13-2010 at 11:05 PM.

 
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