How's THIS for irony? Pain Med Pains...

Discussion in 'Fibromyalgia Main Forum' started by LollieBoo, Sep 30, 2005.

  1. LollieBoo

    LollieBoo New Member

    Okay, so I was referred to the pain clinic within the very large hopital/ clinic complex where my rheumy, neuro and dermatologist are. This because I called the rheumy's office one day to say I was receiving inadequate pain relief from the amount of Tramadol I was taking (200 mg/day), and wondered if I could safely take Advil or Tylenol in between doses to try to help. I was prescribed Darvocet 100N. I called back to the office the following Monday, explaining that I seem to have been getting similar pain relief from the Tramadol, and would prefer to take the non-narcotic option for as similar as the two are for me. The nurse said, "so you want a stronger narcotic?"

    I said, "No, actually I'd rather not take a narcotic if i could get by without."

    She responded, "But you said the Tramadol didn't work and the Darvocet didn't help; I see you had asked to be taken off of the Lortab to be put on the Tramadol... and you are still in pain?"

    I said, "yes."

    "Why did you come off of the Lortab?"

    "Because I was told that I have a chronic condition and so I'd rather not take narcotics for the rest of my life."

    "I see," said the kind nurse. "So you are calling to tell the doctor that you are in pain, but don't want her to do anything about it?"

    Stunned, I stammered, "Well- no, I was hoping there was something I could do to make the Tramadol more effective, or..."

    Long story short(er!), I ended up being referred to physical medicine, and I love the physiatrist I was sent to. He was so kind: listened, commented and helped me piece together the pictures put forth by all of my other specialists. He bumped up my Tramadol to 400mg/day, taken with Tylenol, gave me Lidoderm patches and discussed future options, reassuring me that if ever the need arose, I could take narcotics for a short-term period, then go back to non-narcotic options when the flare subsided. He did not make me feel stupid for not wanting narcotics.

    Okay, now FF to yesterday- I felt so good (and it has been a while!), so I took my two girls, 2 (Maggie) and 1 (Sydney), outside for a walk, pushing Sydney in a little "car" and holding Maggie's hand. We had a nice slow pace, stopping to pick up pretty leaves and then deposit them in Maggie's backpack. We discussed the change of seasons on a preschool level, walked to the local veterinarian's office to see his animals (a place where I could sit and rest- he and his wife are friends of ours), and stopped at the flower shop to sniff and look around. When we got back home, I was so proud of myself for being able to give my girls that experience... and so happy that I felt well enough to do it...

    As the girls napped, aching and soreness crept in. My head started aching intensely and my joints stiffened... by the time my DH got home, I HAD to go lay down. I slept until 7 pm. I had my TENS unit on, Lidoderm patches, took Tramadol and Xanax, Tylenol and Zanaflex... no relief. After the kids went to bed, my DH ran a bath for me, as that ususally helps resolve most of my "breakthrough" pains. Instead, after a 20-min. soak, I couldn't get out of the tub! I hurt so bad, and could not sleep all night long.

    As soon as the pain clinic opened this am, I called and explained the situation and all of the remedies I'd tried to no avail. The nurse called back after noon (I'd had to send my girls to my MIL's), asking if I would be willing to take Lortab in this instance-- short-term only, she reassured me (she mentioned the doc had noted my aversion to narcotics). I said yes, and said I would not expect to need it very long, as medititation had gotten me through the long morning waiting for her return call. She called in a script for 16- with instructions to take 2, 4x/day through the weekend.

    When I told my DH, he asked "Do you take that with the Tramadol or instead?" I said I was sure it would be instead, but he insisted I call to verify, and said I would need a new script for my Tramadol anyway, b/c even with the Lortab, I didn't have enough Tramadol for the rest of the weekend. (I am ususally more on the ball w/ that, but he had been delivering my meds to me since I couldn't move!)

    SO- I called back and left a msg. w/ nurse's line and a different nurse called me back. Her "greeting" was, "I got the message about the hydrocodone and Tramadol, but neither of those are on your active medication list, so you shouldn't be taking either."

    I explained to her that I'd switched back from the Darvocet and that the Hydrocodone had just been prescribed that day. "Well, our office doesn't know anything about it."
    I told her, "The prescription for Lortabs came from your office this afternoon, and I just spoke with the dr himself on Tuesday about the dosing of the Tramadol."

    She said,"Well, I'll have to check with the dr and see what he wants."

    Fine... so at 3:30 she calls and says "the doctor wants you to take the Lortabs all weekend- until they are gone, so he didn't give me a new script for the Tramadol."

    I explained the math involved, how I would run out and need SOMETHING by Sunday afternoon, and that if I could get away with alternate coping mechanisms that meant I could get adequate pain relief without using narcotics, I'd rather do that than just take narcotics whether or not something less would work. She sighed and responded that she'd have to "route another message to him".

    "Okay, I'd appreciate that," I said. "I understand you are busy there, and I can wait for a while on this- our local pharmacy closes at 6."

    At 4:30, my DH called home to say there was no script at the pharmacy, so I called the clinic. Waited on the line for 20 min before someone answered. The receptionist said that she saw that my prescription had been called in- had I checked at the pharmacy? I told her that that was the Lortab and I needed Tramadol. After putting me on hold for five minutes while she paged the nurses, she said that she could not reach anybody as it was 5:00 and their office had now closed. I explained that I had begun calling WAY earlier- it was the nurse who'd apparently "dropped the ball" and I had done everything I shoud have on my end. It was not like I'd waited to call in until the end of their day! She said there was no record of me having talked to any nurse other than the first one, and the doctors were all long gone, so there was nothing she could do- just a receptionist, you know?

    At this point, I was NOT patient. I said, "Yes there is, you can call or page either my doctor or whover is on call for this office for the weekend and explain that one of the nurses made an error and left one of his patients without adequate pain control for the weekend, and that you don't think that patient should have to suffer- I'm sure he'll understand!"

    "I have no way to get a hold of any of the doctors... It's after 5 on Friday- there's nothing I can do for you."

    "I know- time to go home, but I'm getting screwed here because somebody else messed up- it's not like I'm looking for narcotics, it's exactly the opposite! I want to avoid narcotics as much as possible and so all I'm asking for is a non-narcotic alternative!"

    "I can't do anything to help you. Maybe you should come in to urgent care- they could give you some medicine there."

    "Thanks" I live an hour and a half away.

    I am so appalled at how difficult many medical professionals have been to deal with regarding pain control. I had to beg for a PT consult from my rheumy for a TENS unit, and I get treated like a nut because I don't want to be drugged. It seems to me that they would be glad to have a patient that is aware that as tolerance builds, pain control becomes more difficult... but I guess I'm too high-maintenance. I wonder how many of their patients are treated that way and just accept it; go "Oh, okay- I'll suffer in agony the weekend so you can get to your date and I'll call Monday- if I can crawl to the phone!"

    Okay, so for those of you who have weathered the duration of this post, thank you for your tolerance and patience while I ranted... but it did eventually turn out just fine... AFTER I bawled and felt horrible and abandoned and helpless...

    It then occurred to me that (thankfully), I live in a small town of about 3,000 people where I am well-known (I used to work at our small hospital). So after I hung up with the very helpful receptionist and had my pity-party, I called our local after-hours clinic, spoke with the doctor there, explaining the fiasco I'd endured. He laughed- "that's not so common- a patient that DOESN'T want narcotics!"

    He called me in enough Tramadol to get through the weekend. I will be calling the clinic in the "big city" on Monday and asserting myself to the doctor and probably a few other people... I wish fibrofog didn't keep me from remembering names, but really it's a pretty pervasive problem I've encountered in that clinic, so maybe it's for the best!

    Thanks for the opportunity to vent! You all are AWESOME! Some days, just knowing you're here on this board keeps me going...

  2. ilovecats94

    ilovecats94 New Member

    Wow, Lollie, I don't know what to say.

    I went to my family doc in May 2005, and asked for something for pain. I told him that Advil was tearing my stomach up. He said what about Ultram. Well I have taken that and it didn't help me at all. I had only taken Advil for 5 days.

    Then he said what about Lortabs or Percocets. I told him Lortabs would be fine, figuring I would get about 20 of them with 1 refill. Then I'd have to save them for like a sore throat, or when I was sick.

    He ended up giving me 120 Lortabs with 5 refills. I'm getting the refills every month, even though I'm not taking over 2 a day. Some days when I had the bladder infection, recently, I took 3 a day.

    Anyway, the refills expire on 11/18/05, so I'm having to get them every month whether I need them or not and just save them.

    I have 3 bottles I haven't even used yet and still one more refill to get on 10/20. I'll start a new bottle on Sunday.

    My problem is since 7/1/05, my family doc doesn't take my insurance anymore. So, I want to stay with him as I'm on Xanax too and it helps my pain and I know most docs won't give that med either.

    Hubby is wanting to just change docs and I've tried to explain to him what could happen if I do. So, right now I don't know what to do. If we change insurance, it would have to be a good one. Can't go with Cigna HMO because my eye doc and the satellite hospital where I get my mammogram doesn't take Cigna. So...

    Today, when I saw the doc the OV was $67 and lab work was $18. When I saw the other doc in the office on 9/17, for the bladder infection, the charges were $101--OV only $47. I didn't get why one OV was more than the other one. Anyway, I'm willing to see this doc as out of network with our present insurance, but my husband will probably get a different doc. I don't get sick very often anymore.

    Sorry for this to be long, but I needed to vent too. Just thought you would be interested in my story.

    I'm glad you got your Lortabs and your Tramadol. What happened to you is what I'm afraid of will happen to me if I change docs.

    I'm not afraid of the narcotics. I'm trying to lose weight and the pain pills help me stay on the diet. I get more energy from the Lortabs and it helps with the diarrhea problems I get off and on.

    Your story was very interesting. I'm just sorry you had to go through that and that the nurse didn't seem to understand that after you finished the Lortabs you need another pain med. Easy for me to understand. I'm not a nurse, but too bad I wasn't one at your doctor's office. :\(

    Hope you will feel better soon. At least your kids got to enjoy themselves for a day.

  3. dancingstar

    dancingstar New Member

    Hi Lollie,

    Just reading your post brings back memories of how I used to feel when I was going to the family pracitce doc that I used to see when I first began to get sick. He put me on Oxycontin, a drug I never should have been on in the first place. He had the drug rep talk me into taking it, though I protested immensely. Said it was the best thing for my pain management. I never could understood, though, why I had to fill the script through an out-of-state pharmacy.

    One day I got tired of his never refilling them on time and just quit taking it as it was all too much trouble to deal with. Well, quitting was just no fun at all, but a piece of cake next to stopping Effexor, another drug the brat doctor had inappropriately prescribed to me if for no other reason than it made me so ill, and it seems he should have noticed right away. I switched doctors shortly after I stopped taking the Oxy.

    Couldn't resist looking online recently to see that the original doctor has had his license "suspended or revoked." Though I didn't have anything to do with it, I was secretly thrilled.

    I'm glad that you got the meds that you needed...and so sorry that you had to go through such a frustrating experience. It's enough to knock you down for the rest of the weekend if you're not take it easy!
  4. LollieBoo

    LollieBoo New Member

    This is the exact reason I come here! Faye, I really understand your dilemna regarding switching doctors- at least you'll have a back-up supply while you hunt, if you decide to! I would think if you tried a screening process with some of you in-network providers, just telling them (giving NO indication of what your preference would be) matter-of-fact: this is how my previous dr handled my illness and the anxiety that compounds the pain. How would you handle it? Don't tell him why you are dr-shopping, that way he or she may assume you didn't approve of having to take those meds, or that you want similar care-- either way, I think ambiguity will yield the most honest responses from any prospective docs. And if a dr requires a fee for an initial interview, with no exam- run away! Best of luck, sweetie... your posts are always so great! Thanks.

    Alright, now- here's my little secret: my DH prefers me to be on Lortab- he says it seems to work better for my pain, I am nicer and more patient- don't act "goofy" or anything, just closer to the "normal" I used to be....and he notes that I am more willing in the bedroom when I don't ache as much! Shhh... don't tell!

    Dancingstar- Wow- I wonder if he was getting kickbacks from his drug reps? That is unreal with it being in the news and everything about it's street uses. Ha-ha: glad he got his license suspended! I enjoy your posts also- you are so funny and upbeat!

    So why is it that we get so many opposite-ends-of-the-spectrum docs between us on this board?!

    Thanks for your support and encouragement, but guess what? Six months ago, my husband's entire family (MIL, SIL & BIL- + their spouses and kids: 10(mine), 10 (niece), 3 (nephew), 2 (Mine), 1 (Mine), 9 mo. twins (nephews) and 4 mos. (nephew)+ myself and DH) planned a trip to take all of our kids up to North Freedom, WI (1 1/2- 2 hrs away) and take a train ride.... TOMORROW. We leave in the morning and I am so nervous, b/c I really try to conceal any difficulties I have in front of them. I have to go... I want to go... but I'd like to sleep and rest... I know it will be several more days now of agony following, but you know, there's nothing like the smile on your baby's faces!!

    Please wish me luck and pray for me!
  5. elsa

    elsa New Member

    You did everything right but document the idiot receptionist's name.

    If I were you I would do a little detective work before talking to the doctor about this.

    Find out, if you can, the name of Nurse #2 and receptionist' name. Document in a letter the events that took place. Have your husband witness and include info about the doctor who came to your rescue.

    Be sure to cc this to 1. doctor and 2. office manager.
    Wouldn't hurt to include your medical credentials. Let them know your part in this.

    I'm not suggesting you go on a witch hunt. Irresponsible behavior is usually not a 1 time thing ... it would not be a stretch for the people involved to point the finger at you and get an unfavorable opinion going on you.

    Be sure to tell the doc how pleased you have been with his help and understanding and mention how respectful nurse #1 was.

    If you add something like this in letter .. " Please help me ... I would very much like to understand the proceedures to follow so that we can avoid this situation in the future".

    People have a very hard time directly ignoring the plea of "please help me" ... regardless of what comes after.

    I'd also ask for copies of all notes/logs pertaining to you. Acknowledge the cost of such a request and say "by all means, I will be happy to pay for it". Need to protect yourself here ...

    You also need to show the less then professional members of his staff that you are not the run of the mill, take it on the chin patient. Some ( certainly not all) will get away with what they can and not worry about integrity.

    That's true of all professions ... not just nurses and receptionist.

    Sorry this is so long. My Husband's company manages hospital's and physician's group's business side of things. He said for you to do this "without fail" as a form of protection for you and your good relationship with your doctor.

    He said that bad actions on employee's part happen all the time and without fail they point the finger at the patient.

    He also said that anything written down with patient's name and referencing patient's medical treatment belongs to you and you have the right to have copies.

    One more thing ... he said it wasn't necessary to cc the the office manager ... he said they are just that and not clinicians and wouldn't care about this too much ... cc to the doctor should be enough.

    I hope I didn't overstep my bounds with me advice. With my husband's work, I have heard it all and have learned the importance of the patient's role as a consumer.

    I hope it goes well for you. Please let me know how it works out. I absolutely hate it when medical profs. become uncaring and deliver sub-par service.

    Take care,

  6. elsa

    elsa New Member

    Bumping for Lollie .....

  7. LollieBoo

    LollieBoo New Member

    I hope you read my other post on my family's excursion on Saturday-- I weathered the storm, thanks to the Lortab, my TENS and Lidoderm-- and a VERY stubborn will!

    The pain clinic called this am and I told them I would like to talk to my doc regarding Friday's events. The nurse said she'd try to arrange that for today... she was very nice.

    She mentioned the "serotonin syndrome" that elsa had brought to my attention (and thanks to elsa, I knew what she was talking about!). She said that the doc either wanted to change my Zoloft to Amitryptaline or move from Tramadol to a different pain med... probably narcotic.

    I hesitate to change the Zoloft because I like it- I've had no ill effects from it (shocking, given my system!), and I saw a marked reduction in my anxiety. All who've read my previous posts already know of my resistance to starting on narcotic meds at 30 yo... I guess I'll have to pick the "lesser of evils". Because there is the potential that one or the other solution could also be the one change that makes me more functional!

    BTW- I had a phone call from the neurology dept. this am, about a phone call they'd received from my physiatrist's office-- he thinks I have some peripheral nerve damage, and I'm having muscle twitches and spasms throughout the night, in spite of taking 4 mg. Zanaflex. He'd wanted to consult w/ her (if you haven't seen my related posts- my neurologist is EVIL! She told me at my last appt. that there is nothing wrong with me neurologically based on an MRI and an MRA. No further testing. I had told her about concerns brought up by two of my other docs who noted that they saw the potential for two specific neuro. problems that would not be revealed by an MRI/MRA. She agreed that the two conditions are difficult to dx, but that she was POSITIVE that I had neither. The problem, according to her, was that I was consulting drs for opinions in areas that they do not specialize in.. SHE does- and she can look at me and make a dx, she is so good! Besides the fact that I had not asked either doc for an opinion re neuro. issues- they broached the topic based on their own observations... And for those who aren't up on the other doc I had in the same neuro clinic, she was one of those who likes to throw pills at everything without any particular exam or testing or logic behind it... and she threw one too many at me that gave me terrible side effects and so I told her I'd like to try a more logical approach- she hung up the phone on me! i think I've been blackballed!lol!!)

    So ANYWAY, the nurse called me to say that dr. holier-than-thou said that "she doesn't have an explanation for your muscle twitching and spasms- and has no recommendations."


    I explained to the nurse the situation and asked her if there was a particular reason that I was being treated so inappropriately as a medical-care consumer. She said she didn't know, but would advise the customer service dept. and they would contact me- in the meantime, would I like to see a different neurologist in their neuro. dept?

    "No Way!" I can't imagine that dr-hopping and tattling on nasty doctors is going to make me a well-received patient by anyone in that dept. I told her that although all of the rest of my care was being supplied by the same hospital/clinic, I felt it would be in my best interest to seek out a better neurology service provider.

    It is great if my problems have no neurological basis- I would be so relieved! However, a dx based on a pompous assumption that she can visually assess my entire nervous system and base her "all clear" proclamation on an open-MRI and MRA series is ridiculous! Too bad I'm NOT stupid- I'd be really happy!

    We'll see- I'll keep you posted...

    As always- thanks for listening!

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