I was upsetted quite a bit by some of the things I was told by my doctor today... I'll just start rambling things off that we were talking about.... I was bawling at the end of my visit with him because I was pretty upset. Here goes....
Well, if you guys remember correctly, I have a couple different chronic pain issues that are incurable..at least at the moment as I'm not a candidate for surgery at my young age of 21...
I have tons of adhesions around where my gallbladder was (This was not caused *FROM* surgery, but because the doctors took 5 years to figure out why I was so sick to my stomach all the time, and having so much pain all the time..) caused from the inflammation of my gallbladder.. When I had my surgery to remove my gallbladder, my doctor *DID* try to remove most of them. Although, the past year or so (I had my gallbladder out February 13, 2001.) I've been having the same pains again...I've had a CT scan and all of that, and nothing shows up. My doctor believes my adhesions have grown back the same or stronger than they were to begin with. He doesn't think surgery to remove them will help anything at all because adhesions love to grow back, and the only way you will get most surgeons to even open you up over adhesions is if its squeezing off parts of your bowels or something...not just for a lot of pain they cause when pulling and stuff. So thats one chronic pain issue that I have...
My other issue is the vertebrae deformity I was born with (The transitional s1 vertebra)..It slips a lot, and messes with my hips and it also rotates my discs and whatnot...My doctor does what he can to adjust me and try to fix what the slippage has caused, but he can't really do anything to help it even by adjustments..He can just try to fix what it causes...Even though that usually doesn't seem to work, because then the next day it's screwing things up again... It's very painful.. Every night I go to bed on a heating pad. It's not just my low back thats affected, my entire back has suffered in some way from this deformity.... I've already been told in my 30s or 40s I will most definitely have to have a back surgery to have my S1 fused with the rest of the Sacrum... I don't know much about this surgery, but I don't think it sounds very fun...Until then though, I just gotta deal with whatever it hands me...
Lately I have had this shoulder pain, hopefully you guys remember me explaining it so I don't have to completely explain it again, but I'll give a short condensed version.. It's basically a stabbing knife like pain that is between my shoulder blade and my spine...Just the last couple days it started doing the same thing up between my neck and shoulder in that real muscular area on your shoulder. I'm also having recurrent episodes of tendonitis and bursitis in my actual shoulder (the ball of it) that sometimes pinches nerves and causes wierd shooting and numb tingly pains down my arm... Basically for a 21 year old, I'm pretty screwed up!! Plus not to mention, I've been in 2 very bad car wrecks, and have a few neck problems, due to falling at 5yrs old and cracking my head and getting a concussion, that cause bad tension headaches (according to my doc)... I *ALSO* have the hereditary gene for chronic migraines. LUCKILY, my doc prescribed Imitrex, and I tell you that has been a miracle in my life.. I used to be laid up with headaches everyday almost 24 hours a day..Since I've been on Imitrex, within 30 minutes (no matter if I take it at the beginning of my headache, or 3 hours after I've suffered through it--like if I didn't have my imitrex with me) the migraine is just completely gone... I thank God for my doctor giving me that. I want to give whoever came up with that drug a big kiss and hug and tell them thanks for giving me back some of my life!
But I've got that wonderful chronic pain issue... I was just writing in my pain journal last night when I couldn't sleep *go figure*, and I was just writing things to remind myself to talk to the doctor about. So when he took a look at it today, he started answering them... I asked this : "Due to my chronic pain, since I'm not a candidate for surgery yet, even if my shoulder pain does go away sometime, will I still get pain relief? Will I need to be referred to a pain management doctor, or pain specialist? What happens when my tolerance is so high that the Percocets no longer help at all, like the Lortabs do now? Will I have to be on pain meds the rest of my life?" My doctor said, "To answer your question about chronic pain, ultimately, yes. After the percocets stop working at all, I think you will need to go to a pain specialist. The only problem is, what happens when you're tolerant to EVERY pain med out there? You'll run out of options quickly then basically you're screwed. My suggestion is that you just learn to live with the pain. You don't want to end up having a pump implanted in your body giving you IV pain meds because nothing else works. I know you want to be pain free, and I know you have been dealt a tough life, but you ought to just get used to it. You know, everyone walks around everyday with some degree of pain, they deal with it. You should too. Pain hasn't ever killed anyone, at least not that I'm aware of.." I was like, "*crying* I thought PM doctors did other methods than just meds??" He said "Ultimately they do, but the one here in town mostly relies on opiate meds...He doesn't do (then started rambling off a bunch of stuff, but the only one i remember is tens unit?)"
Anyways, I don't think it was really appropriate for my doctor to say that I would just have to start learning to live with the pain. Then I was bawling because I was telling him about how I was having one of my bad gallbladder attacks the other night and my boyfriend just sat there and watched me in the fetal position and couldn't talk or anything because the pain occupied every cell it seemed in my body...He wanted to take me to the ER, but not just for that reason, but because I was really low on pain meds (because my doctor is an idiot sometimes -- check out Mad at my doc posted by me) and I couldn't get anything until today. I told him about this weekend because of him (I got 12 Lortabs from my cousin leftover from her surgery to help me out, but didn't tell him about that), he said "Good, I'm glad you made it without the Percocets."
Anyways, who the H*LL does he think he is telling me that I just need to live with the pain, because pain hasn't killed anyone yet...?! Does he not want to refer me to pain management because I'm awfully young to be on pain meds at this age, or is he just being an A**hole?
Should I just switch doctors? I want to, but at the same time, I'm afraid to, because I finally got him to believe my pain issue was real...But he's acting like after I can't take percocets anymore, he won't up my dosage or give me something else, he'll just cut me off completely....Whats up with that?
Sorry this is so long.. I'll sign off now, but PLEASE PLEASE PLEASE if anyone has advice, or just any support, I'd really appreciate it... Talk about a bad day....
P.S. I also forgot to mention that he did in fact refill my Percocet 7.5's (only 50) and he upped my dosage of Tofranil from 10mg to 20mg at bedtime, since the 10mg wasn't helping me sleep or helping my pain (which he thinks it will do, but I'm not sure...)
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- * HockeyCrystal * -
[This message has been edited by HockeyCrystal (edited 07-15-2003).]
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22 year old chronic pain patient and college student in Wichita, Kansas.
YES< YES< YES...See a different pain doctor!!!! I don’t like his attitude!! First of all, he screwed up this weekend and rather than admit his mistake, he turned it around. Secondly, to tell a patient that everyone walks around in some degree of pain and you just have to get used to it is a horribly arrogant attitude. To a degree, we all have to learn to cope with the pain because the pain meds don’t usually make the pain 100% disappear forever. However, coping with mild pain versus debilitating pain that caused a non-functional lifestyle needs to be properly addressed and I don’t think he is doing that!!
As for pain not killing anyone yet...maybe not directly, but stress and anxiety due to pain can cause a whole array of life threatening issues. Read Shoreline’s post about his heart issues relating to stress resulting from pain. The doctor is a Jack A...for even making a comment like that. He seems very unsympathetic to your health issues.
And another thing, why is it we/you have to “convince” doctors of our pain!! Shouldn’t our arsenal of medical tests and records be enough evidence without us having to feel like we have to describe every little twitch, burn, hurt, pulling, twisting, stabbing feeling through our screams and tears before someone will take our “word” for it??????????? Do we go through all these tests, surgeries, medications, doctor visits, waiting rooms (sucking up half of our lives just to “hurry up and wait” in these awful rooms), and sometimes humiliating exams just for the freaking fun of it!!! Why else would we do it if not for trying to find an answer to our pain and in hopes of trying to find some semblance of our “old” lives!!! How dare these doctors, nurses, etc...make us feel like we have to “convince” them of anything !!!!!!!
Anyway, got off on a tangent for a moment..sorry
Hope this helps in some way!
Sweetie, you need to immediately contact your health insurance provider and ask for a second opinion. I understand that medication is not the only option, and the Doctor is hesitant about putting you on strong stuff at such a young age, but he is choosing to let your quality of life completely fall apart because he has a personal belief that people should learn to live with pain, especially if they are young. This is not right. Why should a 50 year old warrant more sympathy and accurate treatment than a 21-year old? Thats ridiculous. We need to live too. I have just a fraction of your problems,and because I have a good Doctor, I am able to get the medications I need to keep me comforable and active. My Doctor never gives me the attitude that I need to learn to live with it. It is illegal not to treat your pain!
I have read in your previous posts that you are a little hesitant in confrontation, and maybe will need the help of your grandma...use her knowledge and experience to demand the care you need. You have health insurance, correct? Call your member services phone number, and ask them, 1) How do I obtain a second opinion if I am not comfortable with my current Doctor? and 2) How do I get a referral to Pain Management?
It is actually very easy to get a second opinion, and legally, they have to let you do it. When I first was sent to Pain Management, I got this ******* doctor who told me, and I quote, "I know exactly how you feel...I pulled my groin once so I know how annoying it is to be in pain. Just stretch and take care of yourself, and you have nothing to worry about. I know you don't want the epidural injections because you could die from them. Have a nice day!" I walked out sobbing. I was so sure I would finally get some answers and solutions to this misery. I was not going to let it go that easy, so I contacted my referring Doctor (who happened to be a physical medicine doctor who did my MRI and was very sympatheic to my pinched nerves and arthritis in the neck) and he demanded that I go back and see another Doctor. This new Doc is fantastic, and I have a lot of confidence that we are going to get this problem worked out.
Please, please, please get a second opinion. It is not fair that you will be left to suffer because this Doctor has the attitude that everyone has aches and pains. You have to take care of you!! Nobody else is going to do it, so stick up for your rights!
I know so much about what you are going through,,,I struggled for 5 months with my Primary care doc before I was finally referred to get the MRI, etc. I got the same attitude that I was too young to have these issues. It was a horrible 5 months, but I learned a lot, especially that if you are given advice that just plain sounds wrong, it probably is, and you have to take it upon yourself to get another opinion.
Hang in there, don't give up, and keep coming here for support!
Thank you both so much for your comforting words. It makes me realize that I did not in fact overreact to his insensitivity and uncaringness. I didn't think it was very appropriate after my going to the doctor every week to have adjustments and update on how things were moving along (they aren't at all, even though every week, he assures me, I really think we're getting somewhere..If only we can just get the adjustments to stick) and spending so much money (or my grandparents spending so much) to go so often, then be told that I'm going to have to learn to deal with it. You're right Sara, I deserve to have a life.. If anything, I would think he would want me to be able to live and be functionable when I'm young... I'm almost afraid to go back to school in the Fall, because I'm afraid I'm going to have some kind of pain attack on campus and screw myself up worse or my grades dropping due to not being able to concentrate because of the pain. And when I get done with college, and I'm a nurse, I'm just supposed to live with it? Even though activity makes things 10x worse? Doesn't seem quite fair.. Another thing I mentioned to him, and he said "Whoever said life was fair?" I really just wanted to hit the A--hole.. I wish he could walk a day in my shoes, try to live a normal life, and then tell me I need to just live with the pain. He'd be running for meds after an hour. So needless to say, I'm quite upset with him... I understand his hesitancy for starting such a young person on such strong drugs, which he stresses to me every week, how strong the Percocets are... I'm like, I UNDERSTAND, but they wear off after 2 hours! Then I'm waiting for another hour-hour 1/2 before I can take another pain med, THEN i have to wait again for it to kick in and help me out! If it actually lasted a little longer, and I didn't have to wait for 4 hours to pass so I could take another, then wait for it to kick in, it wouldn't be so rough, because then my pain wouldn't go from between an 8 and a 9, down to a 6-7 (sometimes I get no relief at all), then 2 hours later back up to an 8 or a 9 until the next one kicked in... I go up and down up and down the pain scale so much it almost is sickening. I asked if I could take anything longer lasting, and he just blew it off, "The percocets are a very powerful drug..blah blah blah"... Sorry DOC, but I don't think I asked if the Percocets were powerful...I asked if there was something longer lasting that I could take...
So anyways, I'm really tempted to just say screw it, and deal with someone else... I should go back to my Ortho and tell him whats been going on, I'm not sure if he'd help with pain management, but I could always try. It's really sickening that with proper diagnosis, and such obvious signs that I'm in pain (I bawl my head off when he adjusts me, because the pain is so bad), that he doesn't have any sympathy for me. But an older guy my mom and step-dad are friends with can go in there, complain a little about abdominal pain once a month, and get a bottle of 150 pills and told to come back in a month. But my abdominal pain (which actually has a source) is just ignored... Sure I am getting meds, but he gives me 50 at a time... Like he's going to cut me off soon. I just get so darn upset with this stuff, and you're right, I do get a little hesitant with confrontation, but I don't want to make anyone mad.. I mean, today, I was pretty confrontational but he really pushed my buttons...
*Sigh* Here I go with another long whining griping post. I love you guys so much for listening to me and caring so much to give your supportive advice. I don't know what I'd do right now if I hadn't found this website. I'd probably go nuts trying to figure out what to do...And just take his crap, "Fine, I'll just live with it, and have a crappy basically disabled life, where I can't have any fun, even though I'm in college, and supposed to be living it up." What will I do when I have kids? You can't be laid up on a couch/bed for hours lying on heat and ice all the time when you've got a 2 yr old running around getting into stuff all the time! Or me, wanting to be a nurse.. That'd be interesting. A nurse that lies around because it hurts to walk too far, and hurts to stand too long, etc. Don't think I'd keep my job very long, what do you think?!
Like I've said a hundred times, I don't care if the pain is still there, I don't expect it to be, but I *DO* expect to be able to live a functionable life with a lowered amount of pain if the technology is there for it! If anyone else can get their pain treated, even if "it won't kill them," why does it make any sense that I should be disregarded in that sense. I don't have rights to live a somewhat pain free life because I'm young? Kinda sounds like discrimination to me.... I am in pain, it has been proven, he even believes me, but he doesn't think I deserve to receive pain management because eventually I'll have been on every kind of pain med there is, and eventually end up with a pain pump (That's what he said) that distributes meds to me, and even that I'll have to keep having bumped up... But yet a 50 yr old still has years of life left usually...and would probably end up going through all the meds I would have to..And becoming just as tolerant.
BLAH.. I'm totally going off on a rampage again. I'm so sorry for griping so much, but I just really needed to vent.
Unfortunately in regards to my grandma going with me, I don't really think she'd do too much confrontation either... HAHA, what I should do, is get my mom to go. She's crazy!! She'd go off on a rampage! That's an idea, maybe I should...If she'd do it! I wanted my bf to go, but he's pretty non-confrontational also.
Oh, and as for the indirect killing of people due to pain, I didn't even think about that. I wish I had, and I could've said, "You don't think it causes high blood pressure? Mine's been high every time I've come in here when I was in pain, and when I wasn't, it was completely normal!" And the anxiety it causes me, no wonder I'm crying so much...Good thing he already put me on anti-depressants or I'd really probably be depressed. Stress is a constant concern for me, I deal with so much else in my life, but learning to "just deal" with my pain would probably land me in the hospital with anxiety attacks and other things quite often.
Pippin-Your tangent is quite okay, it makes me feel better for my tangents! But I agree 100% with you. None of us should have to brown nose and do all the BS just to get our docs to believe we're ACTUALLY in pain. Like we LIKE doing all the tests and taking a whole crap load of meds everyday... Not only do I have to take my allergy, asthma, and headache pills every now and again, but now he's got me on an AD (20mg @ bedtime), muscle relaxer (2xday), and pain meds every 4hrs... I've ALWAYS hated taking pills.. But obviously I need all these meds, or I'd let them sit in the med cab. But I do it because I need it, not because I like popping pills all damn day long.
Sara-you've been a huge help through this whole ordeal. I want to give you a special thanks to you for all of the wonderful advice you've given to me. You're a great person, and I hope someday I can return the favor to you. Even though I don't know you too well, I love you to death because of all of the care and support you've given to me. You're great, and I hope if you ever need anything that I can help with, you'll let me help! I thank you SO much. Your a very giving person, and so sweet!
(not that I don't appreciate you just as much Pippin, I honestly do!!! You're great too! And the same for you, if you ever need any advice on anything I could possibly help with, you let me know... You too are such a caring, giving person)
Thank God I don't have to sit here and try to convince you all that I indeed am in pain. I always feel like I'm trying to explain myself to everyone, not just my doctor. But not here. You all have made me feel so welcome, and I know you all actually understand me.
God bless you all-
Much !
Crystal
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22 year old chronic pain patient and college student in Wichita, Kansas.
Crystal,
I also think you should get another dr. immediately before you run out of pain meds again. You mentioned about seeing your ortho...I would instead of saying, "Will I need to be referred to a pm dr." say I want to see a pm dr. Don't give them room to tell you if you need to see one or not. Be willing to travel out of town for another dr. It's your health and body. If you have an in town dr. who isn't doing anything good for you, it's just as bad as not going at all.
Your dr. is obviously not concerned with you or your pain. Do you have managed care? I will tell you a secret. I saw a new spine dr. yesterday (45 min away) and after he told me I should get another opinion before agreeing to surgery, I asked him of one dr. I remembered on my insurance list. He told me that he didn't think that dr was a good idea for me to see that one because unfortunately with managed care and HMO's, the patient dr. relationship has pretty much deteriorated and that dr. is not the way he used to be. He recommended another neurosurgeon for me to see and said he was good and didn't have the insurance issues. We told him we would go to him even if he wasn't on our insurance because I've already met my deductible. Even though I traveled to the spine dr. 5 city's away it was well worth it. I had a great experience with talking to him and he seemed to know what he was talking about. He worked on a friend of mine and she is 100% back to feeling great.
I looked when we got home and he is on our insurance. I would have paid him out of pocket though. I have found that with one dr. not on our new plan I'm still willing to go to him out of pocket and have a back-up dr. on the plan to see if needed.
Please get in to see someone else. If you don't need referrals and can go out of town (not just the one your dr. said that was in town) I'd be willing to travel out of town. It's your life and you shouldn't be pushed around by the idiot dr. you have now. You shouldn't have to live in pain. Maybe think about addressing the s1 vertebrae issues now rather than wait till your 30's I had a hysterectomy at the age of 29 and no one ever gave me a hard time saying I was to young. Age wasn't the issue. It was how I was feeling and the problem that required the surgery. I'm not saying you should have a hysterectomy. I'm just saying why put off something that can be done now with your vertebrae if nothing has helped. I did have epidural injections in my neck and had a LOT of relief. I tried p.t. and chiropractor, unfortunately the injections didn't last forever and now I'm at the point of surgery. Good luck to you and I hope you find a better dr. Call around the hospitals to see if any of the nursing staff know of great dr's or ask friends. If you have a great dr. in another specialty, he may know of a good primary dr. or ortho. I asked my gyn for a primary and ortho dr. and he had no trouble referring me.
Upsetting doctor appointment today... 
!!!!!!!
That's an idea, maybe I should...If she'd do it! I wanted my bf to go, but he's pretty non-confrontational also.
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