Help! I am getting treated terribly by my doc/nurses?

21

Thanks all for your replies. I wish I could switch pharmacies but there is only one in the town where I live. I live on a little island and would have to take a ferry to get to another one.

I have an appointment with a new doctor on Monday. Well, more of an interview of a new doctor on Monday. I want to make sure she is knowledgable about ATN, treatments, etc... I was told she does have TN patients so that's a good sign.

I had considered reporting my pharmacy annonymously, but if I did then I have no where to get my meds. After talking with every employee there about TN, I have not had any problems since. I sincerely doubt my current doctor would do what Sheila's does. Nor would my pharmacy?

Laurie, I am so sorry about your father. Like you, having an anxiety medication was a must for me after his death. I was prescribed a lot of it for anxiety and depression. I am just thankful that I recognized that it was making me emotionally nuts. I cried all the time, felt hopeless, etc.. I soon as I went off things got a bit more managable. Klonopin has been a great med for me as it works for a long time and does not give me the ups and downs of Lorazepam.

Yes, honesty does not seem to be a virtue my case. I figured that full disclosure was a good idea and I am also a painfully honest person. So far, its not helped me that much. I know that my doctor does not know the difference between ADDICTION & DEPENDENCE. When asked if I was "addicted" I told her that yes, I am dependent on the ALL the meds I take (seizure drugs, sleep, pain, etc..) as they give me a leg up on life.

I am crossing my fingers that the new doc is more compassionate and understanding of TN/chronic pain. It's a tough way to live. I am not to the point of having my nerve severed. I am holding out. I will probably try an MVD first as my nerve is compressed by a blood vessel.

Thank you again to all of you. I can't imagine not having all of these great people to talk to. Best! Johanna

22

Thanx Red,

I know just the person to call!

Laurie

Richard A. "Red" Lawhern said:

Laurie, MSW = Masters in Social Work. A more current qualfication would be LCSW, Licensed Clinical Social Worker. Pardon my word slip, please...

{:-) And I'm not even on meds!

G'night -- Red

23

Hi, Jo.

Here in Tennessee, the pharmacies are supposed to wait a full 30 days until they can refill a prescription on a Scheduled (govt. controlled) drug.

I get lucky on my Diazepam. My psychologist, whom I've been seeing for half a decade, gives me 5 refills on my Diazapam. My Medicaid does not cover this extremely helpful medication. I'm glad it is relatively inexpensive. Sometimes, if I am in a bind, I will go for a refill on these at 28 or 29 days past the script date, and since I am self-pay and they are not prescribed by a pain clinic, my pharmacy will fill them.

I have REAL PROBLEMS getting my Roxicodone (Oxycodone with no liver destroying Acetaminophen), because it is for breakthrough pain. After my appointment with my Pain Clinic, I have to turn in my prescriptions for Morphine, Neurontin and Roxicodone. They do not keep Morphine and Roxicodone on hand, so they have to call for an overnight from the drug companies (ok, that's one day's delay). Then, they file it with Medicaid after they see that they can fill it.

Usually, my Morphine is ready one or two days after my appointment, but due to all of the red tape, this month, I could not pick up my Roxicodone for FOUR WHOLE DAYS after turning my script into my pharmacy!!! It was so difficult. I do have breakthrough pain! The incompetence of the pharmacy and a clerical error, which dated the prescription, last time for the 20th of the month caused me all sorts of pain! I'll admit, I had to take all of the Valium prescribed to me for the day to calm me down from being in all of the breakthrough pain. I could still FEEL the pain, I just was relaxed enough not to care as much, and go on about things. Oh, it was hard. It scared me, because it made me face how real my pain is and how much I am affected without what are the appropriate meds for me.

Pharmacies do not know what they do to us when they put upon us when they delay our prescriptions.

Doctors, here in my state, also require you to see them every month, usually, if they are prescribing any opiate pain killers. You must also, if you see Pain Specialists are routinely subjected to urinalysis and pill counts. There have been several times when I have not been "right on" when I had a pill count. They let it slide. I'm so glad.

Given also, that is seems extremely difficult to have pain killers, aside from Ultram, prescribed to you in my state, especially for an "invisible illness". I am thankful for my records whenever I was misdiagnosed with TMJ, so I have a history of pain going back to 2003. I feel extremely blessed whenever I am able to get the prescriptions I need to control my pain in a timely manner. It rarely happens. Heck, I feel blessed to even be getting them, here!

I hope others are not dealing with as much red tape as I do.

But, you are definitely right. I detect strongly, in many cases, that medical professionals have an unfair prejudice against those who need opiates and benzodiazipines! Because I was treated like a "drug seeker" by one doctor in the practice in my last pain clinic and a couple of the ladies who worked at the pharmacy I once used, I changed both pain clinic and pharmacies. My new Pain Clinic seems to understand my condition and treats me well. I've described to you above the reason why I may need to change pharmacies again. Well, to top it all off, when I dared to question the delay on my Roxicodone, a pharmacy tech, who I suppose does not know how to count 30 days, seemed very disrespectful to me, all over an inquiry, and the questioning of her count. It was a Medicaid problem anyway. I do not even know why she tried to defend it. I suppose it was on sheer merit of the drug I was asking about. It's maddening. I know.

Just know that many of use experience what you do. Vent if you need to here!

Your friend,

Stef

Johanna Smith said:

Stef-

My GP prescribes my meds at the moment. The meds I am currently on are also supported by my last neurologist. I actually asked to get refills on my Klonopin on Wednesday as I don't take it as often as prescribed. My doc said no due to the fact that I told them that I cannot take Lorazepam due to the fact that at one point after my dad's death I was taking 3 mg a day (prescribed that way). So, instead of recognizing that I know my limits and troubles I again am dubbed with a problem. So frustrating. Yet another med that I have to call to get a refill for. I even brought up the fact that my .25 mg, 15 pill prescription often lasts me more than 2 weeks (the way it's prescribed) but most often a month. Hopefully, my request didn't add insult to injury.

I wait like you used to on my refill day. So, I have them prescribe me with two for my refill date. Unfortunately, I did take two extra pills a few weeks ago- really horrible week- so I would be entirely out on my refill date. So, to avoid that I skipped two doses to get back to having 2 pills left on my refill day.

Question? How are your refills done? Are you on an auto-refill with the drugstore? How are you able to pick up your prescription before you run out? I have no refills on my meds and like I mentioned I have to either call the doc office on refill date or now, I will be calling the pharmacy the day before to have them fax my doc office for my refill the following day. confusing I know. Just wondering how other drug stores and docs work?

Again, thanks for your advice. I am so glad to have found this group as this has been a real source of emotional trouble for me. I already feel at a disadvantage by having pain and am really self-conscious about it so having even more trouble related to pain is very difficult.

Take care! Jo

Stef said:

Dear Johanna,

You hit on something that I think most of us who require opiates to control our pain have had to deal with, at one time or another. It is adding insult to injury, really. One is already in pain and only anticipating paying, or having their insurance pay, for the medication which treats that pain, and is treated like an addict.

Oh, when are the doctor's and pharmacies going to wake up and learn that addiction and dependency are two different things?

I think that I use an approach which is somewhere between Tracy's and Red's. I actually changed pharmacies from one of the major chain drug stores, to a Mom and Pop drug store that has been in business for around half a century. The reason why I did this is because the large chain treated me like a "drug seeker" almost every time I had to pick up medications from them. The would closely review how many days it had been since I had filled my last prescription. They refused to fill it until the 31st day after the last script was written.

This is a problem because . . . .

If I am out of medicine, I have 20 minutes in the morning, unmedicated, before it comes on, that throbbing, searing, crushing, pinching, pressure hell, that I have come to know in my face along the TN nerve path. That means that I would be in a mad dash on the 31st day, after having exhausted my month's supply of Morphine, Oxycodone and Diazepam, which are all "scheduled drugs" of varying ranks.

On that 31st day, I would wake up early, have to get my girls ready for school, pick my fiance up from his night job and get to the pharmacy, unmedicated. By the time I would get to the pharmacy, as far as my disorder has progressed, I would be in pain that would probably put me in tears!

This past couple of months, I have not only changed Pain Management Clinics because of feeling like I was treated like a drug seeker by certain members of the staff, who have no clue what Atypical Trigeminal Neuralgia is, but have also changed pharmacies because of what I explained above.

My Mom and Pop drug store will fill my presciptions on the 29th day, so I don't even have to sweat it on day 30! I absolutely love the place, and the staff. They know my story and seem to care about whether or not I get my medication on time. Compassion, when I find it, I applaud it and patronize it.

I explained to my new drug store WHY I switched all of my prescriptions over to them, although they are a 30 minute drive out of my way, wheras, the major chain is 5 minutes from my home. It is worth the drive NOT to be treated like a common "street junkie".

Johanna, if you don't mind me asking, what type of doctor prescribes your medications, who would require you to have them re-scripted weekly? At least my Pain Management Clinic fills mine monthly, after a visit. My Psychiatrist gives me 5 refills of Diazepam.

I have not had a wonderful doctor/patient repoire with everyone. I have stuck with my Psychiatrist, followed my PM doc to another practice and changed pharmacies, all because I only want to deal with people know care about me and understand my condition.

Maybe it's time to think about changing pharmacies or doctors, or both, if you are able.

When I say I am a bit like Tracy and a bit like Red, I am super nice to a point, but push me and I'm going to kick butt, and take names!!!!! I am as sweet as I can be. It is my disposition. But, the moment I feel I've been disrespected, after what I've been through with this illness, and how much I need my meds to remain functional for my children, my fangs and claws come out! I have written to people above the people who have mistreated me, and I now believe that "the pen is mightier than the sword", and change has to start somewhere.

Chronic Intractable Pain patients need their medication to control their pain. Would they deny a diabetic their insulin????

I am sorry that this happens to you, and to many of us. It's one of the reasons why I started this group. This type of situation is one of my major pet peeves. It sets me off and I see RED!

You deserve the medication to control your pain in a compassionate, hassle free, courteous and timely manner! Period!

Hugs,

Stef

24

I'm more like Red in personality. If anyone dared treat me different because I was getting opiates, I would directly confront them, then talk to the manager, and then call the corporate office. I like using a big chain cause they have better hours, and I can make more trouble for them if they mess with me. A mom and pop pharmacy are usually privately owned, so if they screw me over there's not much I can do about it. I guess I'm a little crazy. For the things they have in stock, I actually make them phsyically show me the different generics available on hand so that I can choose which one I want. (some shapes/sizes get stuck in my throat and I don't like Mallinckrodt).

Don't give them the power to make you feel that way. You take that power back! There's no shame in trying to relieve your pain.

Question - someone mentioned that some pain clinics make you take drug tests. Why do they do that? They know what drugs you're on since they're giving them to you. Are they making sure that people don't pretend to take them and sell them instead? I don't get it.

25

Crystal, it is common today for drug addicts to present themselves at clinics seeking medication "for pain" that doesn't exist. Drug testing is done to establish whether blood levels are in the range expected at the prescribed or reported dose levels which the patient has agreed to stay within. And yes, the other end of the scale is also involved; some patients sell their prescriptions. These problems affect literally millions of people in our mainstream medical system.

Regards, Red

26

I know this is an older thread BUT I want to chime in on a few things for people who come along and read this.

First, you should never, ever, ever feel guilty for getting what you need to make your life liveable.

A few years ago I was having a problem with a girl that worked the front desk of my doctor's office. She was absolutely snotty and terrible to deal with. No matter how nice I was to her, she was just awful. On my next visit to my doctor, I mentioned her attitude, nicely, to him and gave him concrete examples. The next time I came in the office, her attitude was 100 times better. Doctors and nurses need to remember they are in the customer service business as much as the healing business.

Next, if my doctor was treating me like the poster's doctor was/is treating her, I would plan find another doctor. Even if it meant driving 5 times away. We need a doctor who will treat us with compassion and listen to us when we speak about the pain in our body. If your GP will not listen, I think a call into the neurologist that first saw you as a patient, should get a call.

We are real people, in real pain, with real conditions that deserve to be treated with respect and compassion.

27

Thanks for your reply Lisa. I am STILL struggling with this 5 months after this post. I appreciate your words of kindness. Feeling guilty has become a habit for me, unfortunately. Taking pain medications has led to judgement on the part of others, even those who don't know me or interact with me. My husband's mother (who has only met me once for 2 weeks) accused me of being a drug addict a year after I met her based on a comment her daughter made in regards to the type of opiates I was taking. I have to admit that this threw me for a big loop that I haven't gotten out of yet. Not only was it a deplorable thing to say about somebody you don't know but it put my husband in a horrible position. I eventually, talked with her about it but I don't think she cares. She has a son-in-law who is an addict and one of his drugs of choice is opiates. So, I suppose I have been lumped in with the drug-abusers of the world.

Ironically, I was treated similarly by a receptionist at my old GP's office. It was part of the reason why I left that office. I was there a lot at the time as I was in a lot of pain and needed help. She treated me like a second-class citizen and as if I was crazytown! I have been treated much better at the new office I go to, thankfully.

I posted a comment on the Opiate Therapy comment section that you should read. Give feed back! It's regarding a tightening of laws on opiate use in Washington State. Take care Lisa and thanks for the advice. Johanna

Lisa (iamrite) said:

I know this is an older thread BUT I want to chime in on a few things for people who come along and read this.

First, you should never, ever, ever feel guilty for getting what you need to make your life liveable.

A few years ago I was having a problem with a girl that worked the front desk of my doctor's office. She was absolutely snotty and terrible to deal with. No matter how nice I was to her, she was just awful. On my next visit to my doctor, I mentioned her attitude, nicely, to him and gave him concrete examples. The next time I came in the office, her attitude was 100 times better. Doctors and nurses need to remember they are in the customer service business as much as the healing business.

Next, if my doctor was treating me like the poster's doctor was/is treating her, I would plan find another doctor. Even if it meant driving 5 times away. We need a doctor who will treat us with compassion and listen to us when we speak about the pain in our body. If your GP will not listen, I think a call into the neurologist that first saw you as a patient, should get a call.

We are real people, in real pain, with real conditions that deserve to be treated with respect and compassion.

28

I feel for you Johanna. This is the exact way I feel. I had to change Docs 3x before I found a medication monitoring clinic. The PA is excellent. She understands that I have terrible pain and she is sympathetic and doesnt make me feel like a druggie. Johanna if you are still uncomfortable find a NEW Doc or pain clinic. No one should be treated like this. When it happened to me I was so ashamed of myself because of the things the Doc had said to me that I stayed in bed for a week. I hope you can rise above the ignorance of the staff at your docs office and know you are NOT a drug seeker. I have found out some news info about my TN and am having a lot less pain and I have lowered my use of Opiates and I still feel like calling the last Doc I quit seeing because he outright accused me of being an addict and telling him off. I hope things have gotten better for you. I know this is an old post but I saw its been 5 months and it still is bothering you. Try and let it go and look into switching Docs. So yes it has happened to me and it was awful but I am better now with a new doc.