What Do You Think???

Discussion in 'Fibromyalgia Main Forum' started by georgi, Jul 13, 2008.

  1. georgi

    georgi New Member

    hi every one! i haven't been on the board in a long time just for lack of energy but i have missed it and am glad to be back.

    i know this subject has been belaboured many times, and i apologise for bringing it up again, but it has been weighing heavily on me and i thought maybe some personal responses would help me feel better.

    i will try hard to make a a long story short, but i need help so please bear with me as i give a little back ground so yous guys can understand a little better? thanks...

    although i am a very kind and gentle person, unfortunately i am a very difficult patient. i feel sorry for the medical community cos i know i am frustrating.i am frustrated my self!

    besides having life-long chronic fatigue and fibro, (which of course no one had any idea i had, including me,till recent years,) i have an array of female problems including huge and painful fibroid tumors, PMDD,(i forget what that stands for but its like really really bad PMS)

    i have complex post traumatic stress disorder (the complex meaning the trauma was over a long period of time rather than just one event,) depression, anxiety, panic attacks, you know, the works.

    ( i have noticed much correlation while reading the many posts between childhood trauma and fibro. no surprises there if u think about it...)

    to top it off i am terrified of any thing medical- goin to the doctor, taking medicines, and especially, NEEDLES. but i try to do what i have to to take care of my self. Terrified of what appears to be an inevitable hysterectomy in my near future.

    over the years i have been on numerous medications as well as fistfuls of natural remedies for my many ailments. i have had bad reactions to many meds i've been rx'd, and so i freak out any time i am given a new one to try and have to psych my self up to take it. if its a tablet that helps, cos i start with a crumb and work my way up, but so many things are capsules or time release pills, you know?

    anyway... i finally tried lyrica and even tho it made me pass out cold on the couch for 5 hours the 1st day, w/ the dr encouragement i decided to go ahead and take it, twice a day, and see if i get over the side effects and maybe it will help.

    after several weeks of this "experiment" i still felt like a lead weight, and like i drank too much- but not in a good way! unable to see straight, walk straight, think straight, or talk straight, or focus or read or anything- wasn't really going away. and worst of all i seemed to be getting little if any pain relief. :(

    This made me frustrated and sad, cos i REALLY wanted this to work. it works for many people, and i am so happy for them. i wanted to be one of them!

    anyway, what DOES seem to work is lortabs. couple years ago the doc caved and rx'd me some for my severe period cramps, but they are rationed out to me quite carefully. also percodan works well, which i was given after some dental work in the past, but that was a long time ago.

    the other day i went to dr for a follow up i guess for the lyrica and by the time i was done explaining to the medical assistant what was going on with me and how frustrated i was i was starting to cry.

    in the 1/2 hour i waited in the exam room for dr to arrive i was in a full blown bawl- coughing, blowing me nose, till i had a lap full of snotty kleenex and swollen eyes.

    if you have read this far thank you so much cos i really need an understanding ear (eye?) right now.

    the dr came in and DIDN'T EVEN LOOK AT ME. i don't mean didn't examine me but not even eye contact. went straight to his computer. asked me ?'s. "still taking the prozac?" "yeah" i say. he goes, "how's your mood?" i couldn't believe it! isaid, "well! i'm crying! how do you think!"

    asked me about the lyrica. told him my frustrating effects from it. then he said quit taking it and he'll give me cymbalta. i told him i took cymbalta and it did me no good. took it for 6 months, even upped my dosage,still no help. he protested, "but cymbalta is for pain AND depression!" i said that's great but it didn't help either one with me.

    then he asked me if i ever took effexor. that did it. i was only getting more upset. my experience with effexor was such a night mare i woulnt take it again for a million dollars! I said "Yes i have taken it and it made me psychotic and there is NO WAY i'm taking that again!"

    I was irate to say the least, but i tried to explain why. i said "look i've tried every thing and nothing works! do u see why i'm so frustrated??"

    so he pauses a moment, says, "i'm referring you to a pain specialist. they can give you injections in your spine to ease the pain in your arms." my eyes widen. "SHOTS?" "yeah, it's not so bad."

    then he gets up and says, "yeah, that's waht you can do. cos you can't live on lortabs forever." and leaves!

    still in tears and also in shock, a few minutes later some lady comes in and tells me they will be calling me w/ that referral appt. "so that's it?" "yeah"."i'm done here?" "yeah". i left shocked and astounded.

    i cried for 2 days. maybe a pain specialist is what i need, but i am NOT taking shots in my spine, and the way the dr treated me was unacceptable.

    I don't understand? I really have tried so many things. I am not out to get high. on the contrary, the opiates do just the opposite for me, making me be able to function like normal which i cannot do while in pain. i can do house work (if i want to), i can focus, read, write, speak.

    why am i left feeling like i am a low life or some thing? why should i feel guilty to take a medicine that works for me? i feel very naive, but what is the problem with these medicines that makes them so taboo?

    "They are very addictive" i hear. i have taken them in a responsible and rationed manner for a couple years now. i take maybe 4 in a day, 6 on a real bad period. is that addicted?

    i heard on tv some famous person was taking like 50 to 100 a day! i can't even imagine!!!! i don't understand. what am i supposed to do? am i bad to take these? i know i'm not, and that alot of us do that read these, but what i mean is, what is the deal with people? what do they think i'm going to do? is it really that evil of a drug and i am just fooling my self?

    Please help me sort this out. I don't know what to do. should i try someone else so i can get more of these pills? i think this pcp is gonna cut me off. he walked off and didn't write me another script and i am out of them.

    should i feel guilty for taking lortabs? why do i feel like a criminal after going to the doctor? i have been really upset. any advice or suggestions are most welcome. thank you so much!

    [This Message was Edited on 07/13/2008]
  2. georgi

    georgi New Member

    i am willing to try most anything esp if its natural. i just cant stand the pain....
  3. georgi

    georgi New Member

    truly sorry to hear bout your daughter's and hence all your familys' woes due to her health/drug/stress problems. i hope she is feeling better lately.
    i live in a small city (tulsa) and it is difficult to find just the right doctor and nearly impossible to afford naturopathic health since ins. won't cover it. But i'll keep trying....
  4. Didoe

    Didoe New Member

    I can only speak from what you wrote, but what you wrote could be my story. I'm 55 and the only opiates I've had, have been the result of major surgery.
    I do have severe rhuematoid arthritis, FM and wasn't diagnosed until 2 yrs ago. I've lived with chronic undiagnosed pain for over 2 decades. I had reached a point where vicoden left over from surgery (s) clearly was effecting my ability to function--I WAS ABLE TO FUNCTION.

    When I finally was diagnosed by a rhuematologist, we went thru a normal course of medications but pain relief has been difficult, partially because its taken so long to be diagnosed, pain has become severe and non stop. She has me on fentanyl via a patch. Fentanyl is an opiate; addiction is not part of my vocabulary, I take limited controlled medicine, in this case an opiate, to function, work and just do what need to get done. I dont get 'high' because my pain is so extraordinary, the med literally gets used by my body for alleviating pain.

    This is the first med, and I 55, that has allowed me to think of something other than pain and how to schedule my day around coping with pain.
    Why am I boring you with all this...its easy to say you need a different doctor, but, you need a different doctor.

    If you're in NY, go to Beth Israel Medical CEnter, Rhuematology Dept. Its not their policy to dispense opiates, however it IS their policy to treat patients with respect, to listen and nothing is off the table in terms of adequate treatment options including treatment of chronic pain. Its become accepted, but not by all doctors, that inadequate treatment of pain means a patient cannot heal. Chronic pain also has depression as a component and the depression must be treated; you can't just take pain relievers without treating the entire situation.

    good luck...hang in and look for a rhuematologist, its hard but they are out there.
  5. marti_zavala

    marti_zavala Member

    You cannot expect a GP or PCP to prescribe heavy duty narcotics for you for pain or any other reason.

    They are very reluctant to do this anymore and it has been this way for a few years.

    He gave you what you wanted or need - a referral to a doctor who CAN prescribe REAL pain medication.

    There have been such crackdowns on PCP's prescribing heavy meds that they just don't do this anymore. They can't.

    Plus, they really are not qualified to do so as there are many contraindictions based on the other medications you are on.

    He wasn't treating you like a criminal - he just can't give you that kind of medication. All of that goes through pain management docs now. As it should be.

    This keeps YOU safe. Anyway, what's wrong with injections. They were a lifesaver for me. There are various kinds of injections, what worked for me may not work for you but why are so against them when you don't even know if they might help you.

    Good luck with the pain mgmt doctor. Dry your tears. Go in with a calm spirit and get some help. Many of us get heavy pain meds.

  6. Janalynn

    Janalynn New Member

    I'm so sorry that you left feeling so down.

    I don't think that any of us here that are on pain medication would choose to be given the choice - meaning if there was something else that worked, we'd gladly give them up.
    Unfortunately there is a stigma attached and I've repeated this many times here (hope I'm not boring you with it), but truthfully before I came here (and another webboard), I never ONCE gave the stigma a second thought. I wasn't even officially diagnosed yet. I was prescribed Vicodin, finally got 'some' relief, had the dose changed a couple of times, even switched doctors (original doctor was my gynecologist), asked for what I needed, my doctor helped me with the right combination etc.

    Seriously, after reading some people's responses even here, suddenly I felt kind of weird or more aware I should say, discussing my medication with my Dr. - like I am doing something wrong. We should NEVER feel that way.
    Then I remembered something my Dr. told me at one of my first appts. with her, right after I was diagnosed. She said I may be on some sort of pain medication for the rest of my life.
    Of course, that doesn't mean I WILL be, but that to me means SHE is aware of the possible need.

    Now, try to go into the pain management situation with an open mind. They won't do anything that you don't want them to do. Go and discuss all of your options. You'll have the opportunity to tell them what has not and certainly what HAS worked for you. They may very well prescribe Lortabs for you.

    I think you're feeling like you were dismissed, not listened to, and worse, left with no pain relief. Those are terrible feelings, I'd be crying too! BUT try to get an appt with the Pain Clinic asap so that at least you know what your options are. You are not locked into anything. Like I said, if you don't like them or their treatment methods, you do not have to return and you can find another doctor! You may love them though - it could be the best thing that ever happened in your care so far! I certainly hope so! =)

    There are some doctors who ARE good, who do prescribe pain medication. I've seen three doctors since being diagnosed one year ago this week - 2 rheumatologists and my Primary Care physician, no one has EVER made me feel 'less than'. Sometimes it's all in HOW they say things.

    None of us are easy patients - it's not just you. Doctors like to FIX the problem. We're not easy to fix.

    Please keep me (us) posted, I'll be waiting to hear about your next appointment!
    You hang in there!!

  7. georgi

    georgi New Member

    for your responses, although as to the above question "what did i expect?" i am sure you weren't meaning to be harsh; but to answer the question what I expected was for the doctor to at least ask me what was upsetting me, show some compassion, and treat me like a human being who is suffering and frustrated about it and try to create a dialogue with me. I suppose your point being, puleeze, like that's gonna happen!

    In his defense, and God knows he needs one, he doesn't really know me (although doesn't seem to want to) cos i usually see the nurse practicioner at that office who is completely awesome and understanding and compassionate. this dr doesn't know of my extreme medical phobias...

    thus, to answer the other question, "what is wrong with getting injections?" my answer is nothing, if you don't have an absolute terrifying fear of needles i mean like you would not believe! just the thought of them makes me shudder. i can't even look at one on tv.

    i don't know much about what goes on out in the world, this stigma against certain drugs and stuff i honestly don't comprehend which makes me feel ignorant and naive.

    i don't watch the news or read papers, cos i have to keep my stress level low as i can as i am very sensitive to bad and sad news. therefore i have been unaware that there was a "problem" with certain medicines being rx'd, esp since we are talking about a drug that DOES NOT GET ME HIGH! why would any one fuss over wanting such pills unless they wanted pain relief?

    If any thing, they should be worried about letting people get a hold of midol and pamprin!-that stuff makes me feel like i am floating out of my body and i can't feel my face when i touch it! scary stuff, but some people like that kind of thing apparently.

    anyway i will go to the the pain specialist i have no problem with that. hopefully they will listen to me and believe me.

    i was just upset and appreciate everyone's thoughts and input. that's why i get on this site. that is why i enjoy reading the many posts. you guys understand. thanks.:)
  8. jbc66

    jbc66 New Member

    I just finished reading a very good book called How Doctors Think by Jerome Groopman. Check it out from your library. It might provide you insight to your doctor's behavior.

    Some doctors have no bedside manner and some are just assholes. Find a new primary care physician, maybe a female. I have a great PCP who is male, but years ago when I first got sick, my then male doc started treating me like I was hypochondriac even though I'd been seeing him for three years and only showed up occasionally for a pap smear. Like I suddenly was going to turn into a hypochondriac in my early thirties?!?! If I had never gone to the dude before, I could understand his suspicion, but because I'd already had a doctor patient relationship, and he made that assumption, I determined he was a dick and I found someone new. That new doc was a woman and she took me seriously.[This Message was Edited on 07/13/2008]
  9. marti_zavala

    marti_zavala Member

    No, I wasn't trying to be harsh, re-reading my post, it did come off that way. Sorry.

    It is very difficult to get help from traditional medicine (don't mean to bash them but can't hardly help it). I have gotten very little help so I am a little sensitive. Even if he were compassionate, you still probably wouldn't have gotten much help. Sad to say.

    So, the reason I stated what did you expect - is that you have to be prepared and understand what the different types of medicine can do for you.

    Traditional medicine (allopathic care) is based on a broken body part - and while we feel our parts are broken, we are in a state of ill health. They have trouble applying what they have learned to our problems. And man, do we have a lot of problems. So they lose patience with us and we lose patience with them.

    Another thing is that a PCP treats simple things, colds, flu, sprained ankles. Expecting them to understand our illness is a little bit unrealistic (said nicely). All he can do is refer you to a specialist which is what their role is as a PCP. The gatekeepers to the specialists.

    The drug issue is another issue that has changed in the last few years. So, a pain mgmt specialist is the best person to help with chronic pain and will help keep you safe from drug interactions. This is a big deal and while we don't pay attention to this, because we are in so much pain, someone has to pay attention to it.

    Lastly, men hate to see women cry. Period. You may get further by writing down your issues and sticking to that and trying to keep your emotions in check. They are not going to prescribe narcotics to someone who is emotionally unstable (that would be their label - they would be that way too if they had to live like we do, especially without pain meds) but they will send you to a psychologist. It is the fastest way to get disbelief.

    So, to help you get the help YOU need, I am trying to show you that you need to understand the various roles these medical practioners play so you know who to go to for help.

    I know it is expensive since it is out of pocket, but alternative medicine has been the most helpful to me.

    The spinal injections have been an absolute lifesaver and the last set I had, has lasted 3 years. Which means I take a LOT less medication and I don't have to take the heavy duty narcotics. This means that I can save the hard stuff for down the road if I ever need it since our bodies start to get immune to the meds.

    Finally, don't feel that you have to apologize for taking meds or that you are a bad person or that you are weak. If you don't get help from a particular doctor, move on. You cannot let it upset you. Period. Don't shed one tear - just move on. Getting upset is hurting you, increasing your stress level, throwing your neuro-hormones out of whack. Sometimes we have to go through several docs.

    If you feel you need compassion or validation, then I suggest you see a counselor. Expecting anything other than civility from a medical doctor may be too much to ask.

    This is a complex illness and we are not their favorite patients. Understanding that and learning how to get what you need from them will go a long way to making you better.

    Hope that helps. It is so easy to take on the negative things from bad doctors but just let it slide off and say "NEXT".

  10. dragon06

    dragon06 New Member

    my GP and my last 3 GPs for that matter have had no problems prescribing me narcotics and other medications I need to treat my FM and other issues. I don't think it is fair to say that no GP will do that. I have more luck from my GP for meds than I do from my Rheumy.
  11. Manaleon

    Manaleon New Member

    Hi Georgie,

    I hope you're feeling a little better. Doctors can be aweful; I'm sure we all have horror stories of uncaring doctors. If your doctor is going to be like that, I would find a new one. There are good doctors out there, you just can't give up hope of finding one. I still haven't found a good primary care, but I have the best specialists and they showed me how doctors should act.

    As for pain relievers and doctors, we have a lot of doctors where I live that hand out narcotics like candy. The doctor most of my family sees will prescibe vicodin, percocet, and tylox together at 160 a month each. She would only ever prescribe me antidepressants though that didn't do anything for me. I finally saw my rhuemy who tried other things first, but it was the lortab and percocet that finally worked somewhat.

    I don't think it's a bad thing to take Lortab when you need it. I understand not getting high too. I get aweful side effects because of an unrelated stomach condition.

    I have to admit I get nervous though because my mom and gramma both have a pyscilogical addiction to percocet and vicodin. They use it incorrectly though, for sleep or even when they don't have pain. My husband scolds me a lot because I wait as long as I can stand the pain before I'll take anything. He cares a lot. I've been taking the pain meds for almost three years now though and haven't gotten addicted. There have been months where I had to take a lot, and then the next month I would feel good enough not to take anything.

    As long as you're taking it correctly, you shouldn't feel guilty. There's a lot of negative views about pain medicine, so I'd only let close family and friends know my medications. My mother in law just found out that I take the Lortab and she didn't seem happy, but she doesn't feel the pain.

    Anyways, I hope you feel better soon and get a better, caring doctor. You should feel guilty for taking something that helps the pain.


  12. Manaleon

    Manaleon New Member

    Just remember that Lortab also has Tylenol in it. If you look on the prescription bottle, there are a few numbers either next to the drug name or under(my Lortab is 7.5/500mg). The second number is the amount of tylenol in each pill. With tylenol, you can only take 1000mg every four hours, and only 4000mgs of tylenol a day, otherwise you can do serious damage to your liver.
  13. marti_zavala

    marti_zavala Member

    Of course, you are right. Just showing the extremes so georgi can see the difference. My GP does not but that doesn't mean others do not. My rheumy does a few but not all - there are some rheumys that don't prescribe ANY pain meds. I have even heard of pain docs that don't prescribe meds- which is ludicrous.

    We just have to keep trying to find a doctor who is willing to trust us and work with us to find pain relief.

    But we can't go to a GP expecting to get narcotics. If they do, great, but we can't get upset if they don't. That was my original point.

    It would be like going to a podiatrist with chest pains.

    Georgi - you know you are not abusing the meds. You might have to go through ten doctors to find someone to help you. To shorten this route, can you ask someone local to you who they go to for help? Referrals from someone with our illness are worth their weight in gold.

  14. lrning2cope

    lrning2cope New Member

    after all , you are paying the doctor for a service to you . It is not the other way around. If the doctor doesn't earn his pay by showing compassion , then go somewhere else and let a different doctor be of service to you .

    My ex-sister in-law and my ex brother-in-law are both doctors. They do a good job . However , they are emotionally stunted . Many doctors go through the process of med school and know what to do to write scripts and do procedures , but they do not learn how to have compassion or how to handle thier own emotions , in med school . It is a sad fact. This may be changing ; I hope so.

    So ... it is time for us (patients) to stand up for ourselves. The medical people are providing us with a service . It is not the other way around . We should not have to hold anything back for thier sake. They need to learn how to treat us as WHOLE human beings with feelings. The whole package . When the medical profession can treat us as a complete human being then maybe they will start providing a complete service that truly takes care of our needs. If someone is crying they have a need and that doctor needed to look past his own emotional ignorance and ask you how he could help.

    I couldn't help replying to this post. I just have had enough of doctors feel that they are intitled to do what ever they want to do and think that they can get away with it. They need to start truly earning thier pay.

  15. poets

    poets Member

    We have a local GP in our area who although I'm in severe pain I won't go to. He is too free with the pain medicine. He has my friend who has back trouble (bone spurs) on an indefinite dosage of methadone patches, and prescribed Ultram in bottles of 200 at a time for my niece and told her it was not a narcotic (or even close) and she overdosed on them and died.
    He needs to be stopped before he kills someone else. I've heard many other horror stories about him too. I'm scared of him.

    Guess what I'm saying is, some GP'S do indeed prescribe strong pain medicine. My GP who passed away three years ago gave me Vicodin a number of times, but in moderation. Not 200 at a time! And not continually.

    So Georgie, I certainly understand your need for relief. And it really does sound as if your doctor was not a very understanding person. Even if they don't want to give you a medication, they could at least be nice about it! I have no pain medicine other than Neurontin and my Rheumy told me my FM was severe. I also have osteoarthritis, multiple fusions in my back and bone spurs. I could function so much better if I had a bit of help. Just if I only took it on days that I have a project like cleaning the house.

    It's rough, I know. I hope you can find some relief somehow that's safe for you. I don't blame you for not wanting the shots in your spine. They're expensive and only a temporary fix. My mother took them and didn't have much luck with them. Keep us posted.

  16. georgi

    georgi New Member

    have been greaat. thank you so much for all your in put it means so much to me! all your advice is very helpful. and i appreciate your sincere concern.

    thank you Marti for your apology. when i first read it yes it kind of hurt my feelings but then i re read it and realized you were just as jaded as the rest of us and was trying to get me to wake up and smell the coffee.

    The main issue was not the lack of perscription, just the way i was treated. i'm okay now, and look forward to taking more control of my situation when i go to the pain manager.

    and yes you are right i do not abuse these drugs. i have been taking the lortabs judiciously and carefully as i can get them, for a few years. they help me be able to do such fun things like clean the kitchen. so much for abusing them to get high on huh?

    anyway thanks again. you guys are great. :)
  17. gapsych

    gapsych New Member

    I am sorry you had to go through this. This type of behavior is not acceptable.

    At the clinic/hospital I go to they always mail you a feedback checklist where you can put your comments about your doctor visit. They also ask questions about the wait time, the receptionist, doctor's nurse, etc. I used to ignore them.

    I have now started sending feedback when I have a positive visit. You do not even have to put in your name.

    I know that more people are apt to send in responses that are negative and that kind of feedback is helpful.

    I also think that it is important for the doctors, nurses, etc. to get positive, negative or somewhere in between, responses as these forms are part of the medical staff's evaluation. Especially if there is a pattern.

    In reality, I have to admit there are times when I do not have the energy to fill out the form and mail it. But I try to keep this principle in mind.

    It will not necessarily help the situation but it sure can't hurt. It makes me feel proactive.

    Take care.


    [This Message was Edited on 07/15/2008]
  18. georgi

    georgi New Member

    about filling out those suggestion/ comment cards. we don't have them at the doctor, but i have filled them out at restaurants and stuff and it makes me feel good to be able to say good things on them and compliment them.

    i guess it's a little bit off the subject from the beginning :) but thats okay.

    with customer service being so lame these days so often, i make it a point to compliment service people whenever they are nice, helpful, etc.

    i thought it might be interesting to let you all know that i phoned the nurse practitioner that works with the big meanie dr i whined about. as i said before she is fantastic in her empathy, listenening, understanding, etc.

    i told her that since she works with this guy she might want to know how it went w/us, and i was concerned that it might reflect upon her negatively. i praised her again for her kindness and helpfulness over the years. i said, "i don't know what u can do, but i thought u might wanna know about what happened." she was very appreciative i told her and she was very cool about it and also very sorry i went through that. i also took responsibility for my end of the situation, but she said it was still wrong how he acted.

    she also said what you all and my friends have been saying and frankly i'm getting almost excited about- that the pain specialist may be just what i need. she says they deal with chronic pain patients all the time and tend to be more empathetic and also can tailor a plan to fit me better than they (the pcp's) can.

    so i'll shut up for now. thanks again!
  19. marti_zavala

    marti_zavala Member

    This is great! It does hurt to be treated that way. I am glad that she apologized for him and that you had encouragement from her.

    It is so easy to get discouraged, just getting to the doctor is a big deal, paying the copay is a big deal, then not being helped can be devastating.

    Good luck with the pain specialist - and if he is not helping you - MOVE ON! He/She works for you.