If The Appt. Isn’t Going Your Way,  Be On Your Way!

If The Appt. Isn’t Going Your Way, Be On Your Way!

By Suzanne Stewart

Are your medical conditions/illnesses very complicated? Do you have more than the average person’s share of visit’s to medical specialists’? If you are anything like me, with a variety of high pain illnesses, then the answer to these questions is a definite “YES”.  Most of us who are “complicated cases” have had experiences that most healthy people wouldn’t be able to fathom. It feels as though I’ve been treated with less respect, since I’ve become a chronic pain patient. I know this because I was once a healthy person. I was listened to and given treatments or tests to find answers.  I went to a specialist several years ago, who should have known what “RSD/CRPS” is all about. A Dr. who should have known what the letters represent.  He took my husband and I into his office and sat us down in small chairs in front of his huge desk.  He barely glanced at the packet of information that I’d given to him. I bring it to each new Dr. appointment. The idea is to make it easier for them and for me. I don’t have to continuously re-write answers on every new patient questionnaire. The physician can flip through very clear descriptions of my medical history. This Dr. looked down at the packet of information for just a couple of short seconds. He looked up at me and said “So what is R.D.S.”?  Really…. What is “R.D.S.”?  I looked at my husband, gave him the signal and we got up and left.  But not before I explained to that Dr. that “It is not called R.D.S., it is R.S.D. and also known as Reflex Sympathetic Dystrophy and/or Complex Regional Pain Syndrome”.

Suzanne Stewart

I went to another specialist who told me that even though I have legitimate high pain illnesses, including systemic CRPS, my “pain meds are way out of his league”, and “there is no reason for me to do P.T. or O.T.” Then he told me if I “wanted a Cortisone injection I could have one”, but otherwise nothing he could do because “everyone over 50 has a torn meniscus”.  It was so strange because the first few times I’d seen this Dr., it was right after my car accident. He did the appropriate tests and then he did surgery on my 2 torn meniscus’. But some time had passed and now I was a “chronic pain patient” with several illnesses. I felt like a Pariah, as if now I was not to be taken seriously. Next, he entered the room with a large needle. I knew what it was because I’d already had Cortisone injections to my knees s/p my MVA in 2002. I started to cry.  I’d done this 7 times before, but never with a diagnosis of “severe full body/systemic CRPS”. I’d always been stoic and therefore felt respected by this particular specialist. He told me “I’ll come back when you’re not hysterical anymore”.  I told him that injections can make CRPS worse. In between tears I reminded him that it hurt me very much to even blow air on or touch my knee.  I just couldn’t imagine that kind of injection with this kind of pain.  He left the room and came back a few minutes later.  I was afraid that he wouldn’t help me again if I didn’t comply.  I should have listened to my heart. But fear of a person in a position of “power” over me (or so I felt at the time), allowed me to let him hurt me even more. He had the nurse spray the Lidocaine skin numbing spray, continuously, as he put the Cortisone injection into my already burning, aching, freezing, sensitive left knee. In the end, my pain worsened and the swelling was more than when I started.

Another series of unfortunate events was when I visited several specialists for my shoulder injuries after the car accident. I kept getting told that I had a “torn Rotator cuff” time after time. But I knew that something else had to be wrong because they were saying that I had a torn Rotator cuff in both shoulders. But my left arm had a nerve pain that went down my inner arm whenever I moved a certain way. I went through this pain for over a year and through at least 5 physicians of the same specialty. I didn’t give up, not even after one of the Dr’s said to me “What part of -“I can’t fix it, don’t you understand? Is it your Brain injury?” I quickly left in tears that day (*because I do have a TBI from the MVA)  and never looked back. I finally found a Dr. who listened to me and I was finally diagnosed with a ruptured biceps tendon, that required surgery with 2 screws to repair it. Someone finally listened to me and my inner feelings were correct.

Several similar  incidents have happened to me and I know they’ve happened to many of you. I’d like to share one more experience; the most dangerous one for me. There was a time when I was passing out again and again. I was vomiting from all of the different medications they’d been giving me to “help” with the various pains s/p the MVA. I was in a “Six months and out” rehabilitation center. Meaning whether you get better or not, you are “kicked out after 6 months”. It was a terrible program and it is a story for another day. But what they did to me was unforgivable. Nobody was listening and no one was helping me. They forced me to swim in a pool & get dressed when I could barely button or unbutton anything for myself. They tried to blame it all on the fact that “I’d been abused”. They truly thought I was “faking” or manufacturing the fainting spells! This was the one and only time I’ve ever been accused of anything like that. They strapped onto an exercise bike while I was suffering from 2 torn rotator cuffs & 2 torn meniscus’. I tried to yell out to two physical therapists who were talking to each other.  I yelled to them that I felt faint and thought I might pass out. I did faint while still strapped onto that bike. They had to call an ambulance and as I lay there waiting, there was fear in their faces. A shakiness in their voices as they told me to “lie very still”. My heart rate was only 24 bpm and my blood pressure was only 70/40. I was later told that I could have had a stroke with my stats this low. I was hospitalized and that’s when I received my first permanent dual chamber pacemaker. I was watched all night and then diagnosed with “Sick Sinus Syndrome”, a bradycardia/tachycardia arrythmia in my heart. I was also diagnosed with Prinzmetal Angina or Cornonary spasms, Long QT syndrome, Atrial fibrillation and more. After my recovery, I found a great specialist in Autonomic system failure, POTS, pacemakers and EPS. I’ve been treated by him ever since 2003. He is the best Dr. I’ve ever known and I feel very lucky to have him.

But do you see how we are not listened to or believed at times? We are sometimes not taken seriously because we are “too complicated” or just because we have many illnesses. Some Dr’s don’t want to get involved in more than earaches and sore throats. Things they can “fix”. They can’t “fix” us and so some don’t want us as patients. Many pain patients have been through bad experiences such as car accidents etc. We deserve to be respected the same as anyone else, if not, just a bit more!

If you go to a Dr. and:

  • he/she stands by the door and cannot wait for you to finish speaking, before telling you “Ok, we’ll see you in 6 months, nice to meet you”.
  • If you go to a physician who acts like you have “too many things wrong with you”.
  • If you can tell that they think you are just too complicated and they don’t want to be involved.
  • If you bring your records and all of your information and they go against your other physicians diagnosis’
  • If you get put down, made fun of or called names
  • If the Physician doesn’t have a clue about your illness(es), for ex: “RDS or RSD”
  • If They want to ignore your other Dr’s treatments and start all over again
  • If they act like you’re just too much trouble and they don’t want to be bothered

LEAVE….DO NOT PASS GO! Don’t feel that you have to finish your appointment! Many times I give my husband our secret “nod” and we just leave before the appointment is over. There’s no reason that you need to stay anyplace that you do not feel comfortable. You don’t owe any Physician your time or money, if they aren’t treating you respectfully. Remember that you’re paying for their services. If you aren’t being listened to or taken seriously, please be on your way. It doesn’t matter how many Dr’s you visit until you find the one that finally “clicks”. Don’t give up; there will be one that finally “gets it” and understands your issues. There will be that one to finally help you.

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 17 comments for this article
  1. Constance at the end of my rope at 11:17 pm

    Sorry for everyone who suffers from chronic pain.
    Walking out of too many doctor’s office and then it’s called “doctor shopping”.
    I think doctors are intimidated or dismiss you as “drug seeking” when you go to an appointment with a package of medical records. Walk out of just one pain clinic and you’re labeled a “drug addict”.
    Writing letters to government officials got me no where.
    I have lost all hope of getting any help.

  2. Judy at 5:50 pm

    I have absolutely no faith in doctors anymore. 25 years of living with chronic pain, and they can’t do anything to help. I had the epidural steroid injections multiple times, I’ve done PT multiple times, was on pain meds for a while, but very limited. I was told to lose weight, (I did, but it made no difference in my level of pain), surgery was not an option (and I’m glad for that since I’ve heard way too many stories of failed back surgeries that often left people in worse pain). The final straw was about 15 years ago when I was told to “learn to live with the pain”……..thanks a lot for caring Doc. I also have to deal with chronic fatigue, which leaves me without the energy to start the exhaustive search to try to find another doctor, with no guarantee I could find a decent caring one. The good thing is, I’m OLD, so death will be my pain relief…..I’ll finally be pain free!!!! I’m not looking to go that route anytime soon, but when it comes I will welcome it with my whole being. So thanks Doc, I’ve “learned to live with the pain”…..unfortunately there’s been no quality of life.

  3. connie at 2:52 pm

    Some scientists now say that mammograms are at best useless and at worst dangerous. I tend to believe them since it cannot be healthy to compress the tissues so much. I refuse to have mamomograms and have for years. The last one I had did permanent damage to my breast tissues! I went in with no sagging at all which for someone my age is almost unbelelievable and came out with not only severe pain that lasted for over a week but saggy boobs!!

  4. Cheri Furr at 7:22 am

    Daniel Hoxit and others: I am so sorry for the awful experience with doctors and what you are going through. Chery Marie: PLEASE at least go some place that does mammograms and continue to at least get those and pap smears! They could save your life!

  5. Cheryl marie at 9:12 am

    Living in a smaller town, unfortunately don’t have the option of walking out. Unless I want to drive 4 hours to see another physician. Its painful emotionally as well when I recall all of my incidents of being treated like a loser because of my pain.

    The most painful was from my GYN because I thought he was different. He was funny, empathized with my situation, and really thought he cared. I even bought him a gift. Until one appt he changed. He said he didn’t think I wanted to be out of pain because I never said that and said I went to too many doctors. Are you kidding me!! I only spent 8000 a year out of pocket on counseling, acupuncture, PT, medication etc all because I loved being in pain. He backtracked at my next appt but I know what he said. I would think about it when I was in tears from pain thinking sure I love this.

    I really don’t go to doctors anymore or to him. I just tough things out. Haven’t even had a mammogram in 4 years. I just don’t care anymore.

  6. Kathleen Burkinshaw at 4:02 am

    Suzanne, thank you for sharing your experiences. I can relate and empathize with you. I have been living with RSD for 16 yrs it’s so important to listen to our inner voice and not be afraid to use it. I’m grateful because I have a primary care who understands RSD(and doesn’t call it RDS😊). I did visit her prior to choosing her to see if she knew about RSD as well as if she wouldn’t mind the disability paperwork. I enjoy your posts. Sending a gentle hug.

  7. connie at 1:35 am

    Yeah doctors KNOW all kinds of things like that pain meds make pain worse if used long-term and can’t understand why you disagree when prior to pain meds y hubby couldn’t hold me no matter how gently without me crying out in pain and now after many years of taking pain meds I can actually be held in his arms! I,like so many others, have lost too much to pain, please don’t take that too!!

  8. StevefromMA at 6:23 pm

    Good post and too true. My pain management specialist left while I was talking during two sessions and on the last one ( I didn’t know it was the last one) threw down my chart and said she didn’t think meds could help me and left. No good bye or good luck. A real healer.

  9. Ben Geddin Wurse at 5:07 pm

    IF you live in a small town or visit a small town doctor, you may stand the chance of being tagged a “drug addict” by visiting several different doctors in the small town “looking” for pain relief. I have had a physician come into the exam room with the preconceived notion that the ONLY reason I was there was to get a prescription for pain pills.Even if I KNOW that I have no further options for my chronic pain treatment other than opioid medication, it would be “nice” for the physician to actually listen to what you are telling them.This before finding a good specialist. While I agree that if the doctor is not knowledgeable about the condition you are seeing her/him for, or they have the preconceived notion why you are there, time to go. Be more considerate to the doctor than they are to you and nicely excuse yourself from the examination room. If you are fortunate enough to be able to see a pain specialist, heaven help you IF you are thought to violate your contract. You may or may not get a “specialist” to see you again. You have become a “drug addict” trouble maker. Write your state officials. Write your State Medical Board. Write your Governor. Write Congress. Write the President. Lives depend on it! Chronic pain medicine is as needed as insulin. As needed as “high” blood pressure medicine. Not everyone needs it but, if you do, it’s critical that you get a sufficient dosage!

  10. connie at 12:06 pm

    I don’t know what is worse, the doctor who is openly rude and/or cruel or the one who makes a good show of listening only to end up proving without a shadow of a doubt they didn’t hear a word you’ve said! At least the ones who are openly nasty you can walk out on and not get blind sided!
    I spent over seven years dealing with a medically fragile child and all the attending specialists. I was treated as an intelligent person whose personal knowledge of what was happening mattered and was listened to. Fast forward a few years to my becoming a cpp and suddenly I am treated like an imbecile who can’t possibly know my own body! Its very frustrating!

  11. Daniel Hoxit at 11:11 am

    Hello,
    I have a mixed bag of part comment,info request and any comments anyone has.i am a 48 year old male was very active hard working hard playing avg guy, always suffered lower lumbar problems and pain and leg pain, numbness, burning , weakness,pins and needles,since I was a child,1st grader even. I managed very well, thought pushing through the pain everyday was a normal thing, just part of life,then in 1997 it all changed,had a single car MVA and my problems started. By ’02 I was out of work, disabled with l1&l2 had according to seven surgeon’s oppenion’s had hyper extended crushing on my spinal cord at l1 s1 nerve root area,myleogram confirmed along with a myriad of other test seemed too confirm everything, unearthed a unknown old cervical fracture of c6,nerve biopsy revealed I was suffering with one as expected form neuropathy from the mechanical injury, unexpected was the still undiagnosed,unspicfied type,Dr was awesome and very knowledgeable,said at first looks as if you’ve got underlieing diabetetic related neuropathy,after a second and third byopsy he was scratching his head,MS,more tests,no not MS, vitamin b defincany no, part’s of it mymed all the above in one way or the other, finally nailed it down in’03 at least far as what was happening, something causing a autoimmune response burning the sheathing from my nerves,then in ’04 again everything changed,this time I was diagnosed with cancer,testicular cancer,not just one type,siminola carcanoma, non-simonlina carcanoma and germ cell tumors,week after a radical rt orgiectemy a precautionary CT reviealed it had went into metastatic stage and was pretty well every where from my lymph nodes kidneys lungs brain,and you guessed it,three tumors in my spinal cord at t-12,L-1 and L-2, chemotherapy bound I was so there’s the 3rd type neuropathy,plus the tumor damage that remains in addition to every thing else,equals unmanageable, unbearable pain from hell!! Tried everything,only thing offered any relief at a affordable price,as I had no income or ins while waiting for diasabiality to come thru (wasn’t taboo then,pre Anna Nicole Smith’s death) was a god send, methadone and fentynal patches had assistance program then,well my Dr Office let me fall thru the cracks and didn’t get a reschedule,after a late office visit ,been seeing him at six months but I simply forgot when they didn’t call,kept writing my scripts every month no problem, called in for my scripts January 2016 and was informed I had violated policy when I had to reschedule my Dec follow up 5 days to January 2nd, I was being dropped from the practice,one mth supply meds,no referrals,messed up my final script, wouldn’t fix it, shorted me 120 methadone and 5 fentanyl patches,after seeing him for nearly 17 years, and that appt I rescheduled,first time in 8years, twelve years on 150 MGS methadone and 75 mcg fentanyl and six mg of Ativan,god I wanted to do die just from withdrawal syndrome,touhged it out three months cold turkey and nuff was nuff,got in a pm clinic and tried getting my records to no avail,in the three months he moved away closed office.pm Dr was having no part of putting me back on my old regimen of methadone, fentanyl yea,OXY 15 IR ‘s tid one TS every three days only 50 mch this time,they crucified me when everything that he prescribed was a Jansen pharma product after a bunch of suggestions,ranging from kadian,oppana,to a high dose of zorhydro,all but latter I have been prescribed previously,simply said no Daniel your ins won’t cover that, ignoreing me telling him yes sir they will, already had that all approved by ins Co previously, said it jokeingly Jansen pharma got y’all taken care of well I guess huh Doc, gave me a dirty look rushed out the room and sent a nurse BACk in with scripts,and a drug screen kit,no biggie, nothing to hide,well for NXT six consecutive months,started next visit, said something questionable Poped up on your screen,Dr want you to retake,OK no problem,let’s not do urine,I just peeed,do a blood draw and get it over with and put this to rest they don’t lie! Took four large tubes blood came back not enough sample/test material,took eight that month,oral swab next month,next a swab,blood,8tubes and it all came back fine on the swabs blood not nuff sample, inconclusive, urine came back positive for a unspecified illegal substance,so they dropped me, no nothing!What do I do,Dr’s run from me now,can’t get records from my neurologist to verify anything, can’t get a referral without a GP all which don’t all sudden won’t accept my ins so they can’t see me,so yes I know how a complex case scares the beegeezies outta a lot of Dr’s and treat ya different Hun all to well, especially when you’re a informed patient they r really quick to pin professional in front of patient all to VB easy thanks, successions and comment very welcome,thank you,Daniel

  12. Margo at 10:00 am

    I once had an oral surgeon ask me about my Chronic Vaginal Pain Syndrome. He misread my medical history.

  13. Dennis J. Capolongo / EDNC at 9:13 am

    Dear Suzanne, Your article is so true but unfortunately is shared by so many (if not all) in the Chronic Pain Community (CPC). Pain physicians today practice what I term “Wham-Bam Medicine”… “Hello… Okay…. Goodbye!” Rarely do they show the compassion & respect necessary for those who require unique and timely care. I have found its probably because they don’t have the answer we seek, and their ego prevents them from admitting such to their patients. So rather than say, “I’m stumped here”, or “I’m really sorry… I wish I could, but I cannot help you”, or “I’m not familiar with your ailment” they routinely fall-back on their list of “Trash-Can-Diagnoses” or callously initiate redundant treatment plans with little to no proven efficacy. Therefore I strongly believe its up to us advocates to relentlessly educate and instruct the medical community to show the compassion and respect the CPC deserves by telling their patients the truth, even it that were to hurt their precious ego.

  14. Sandy Auriene Sullivan at 8:24 am

    An experience I had with a local neurologist was terrible. At first he was pretty decent. He thought my paralysis wasn’t too complicated until he realized I had loss of feeling and movement even on the bottom of the foot [different nerve, if top of foot/calf its one thing if the entire foot and calf it’s another nerve]. After that he wrote everything down for a plan of action. Well alright!

    Get my nerve conduction test and it’s bad. Neurologist does *NOT* give me a report. Sends scathing report to my primary care and pain specialist. He tells me “I think this neurologist is a bit off….exaggerating.” Me: “he seemed ok to me at the time…” Ok. Off for the head to tailbone MRIs w and w/o contrast. See, I had broken a tailbone in the past but knew there was no floating bone/s in the area. The neurologist wanted some….
    Zero of the nerves that didn’t respond properly went back to the nerve root at the spine, meaning the compression was happening after it left the spinal nerve root. Ok…
    .
    MRIs done, report read on my end; mom in town and she goes with me to see what this neurologist has to say. [it was the lumbosaccaral nerve but they cannot find the compression that’s because by the time I had the MRIs feeling was slowing coming back!]

    My 2 mothers and myself go in with the MRI report. My mother drove 7hrs at 77yrs of age just to be there for an appointment that saw this doctor yell at me, talk down to me, and tell me “can’t do anything until the nerve shows up compressed on MRI – keep getting MRI’s randomly, good bye…”

    Wait, what?! Remember nerve conduction test? Ya, I never got that report my doctor did; Neurologist tells me “READ the damn report” [hey the website, the hospital you represent etc all says family encouraged to come and encouraged to ask questions. It came out of YOUR mouth too Dr Neurologist… ] Can we get some questions answered?

    I left in hysterics. Walked out and told my doctor “I need another referral to a new neurologist, please” he said “I thought you said he was great?” me: “he was on 2 appointments but this last one was so terrible that it undid any good he did; that he would treat my mother like crap who drove all this way?! No. I need another one” He snickered and new referral sent.
    I still need to see him…. *sigh*

    Walked out of too many doctors and please please be careful of walking out of too many doctors with whom you sign a pain contract with already. They do not tell you that goes against you when another pain specialist sees you. The medical community tends to circle the wagons with RARE exceptions and glaring neglect of duties that cannot be ignored.

    Try to keep primary and pain specialist the same. Stick with them even if the first appt doesn’t go off great. I have come a LONG way sticking it out with my current doctor for the past 7 years. He knows me, I know him. We get done what needs to be done [I use injections in areas it helps. Possible CRPS too. :/ but there are areas where I tell them *you may not touch there…please* The areas on me tend to change with the exception they are primarily on the left.

    Oh one last thing. Be polite, be firm and treat the staff who handles your records politely – if you’re upset and/or crying – remind them it’s not their fault, it’s not the docs fault – it’s just the day.
    17yrs CPP w/significant progression 2yrs now.

  15. Robin Purvis at 8:03 am

    Thank you so much to the author for sharing your experiences. I had trouble with a doctor, putting me down, calling me an addict within 10 min of hearing my fibro symptoms, completely changing my meds, and then ignoring my calls for help when the new meds had me doubled over in pain. He even took a prescription bottle that another doctor had given me for anxiety and threw it in the garbage. I felt like if I dug it out of the trash he would use that as proof that I was addicted to it, though I had only been on it for a few days. When he criticized me for having my husband come to an appointment with me, though he had been very polite in front of my husband, I decided the doc must be bipolar, or just mean, but he didn’t want witnesses to his treatment of me and that made him dangerous. But I have never talked about it much and still feel bad for letting someone abuse me like that. I know throwing the meds in the trash was probably even against some regulations, but who would believe me? He’d tell them I was an addict. I know better than to take that treatment now. Thanks for getting the word out. We need reminders sometimes that no one has the right to abuse us or ignore our symptoms!

  16. Yvetta BarbeeMiles at 6:11 am

    I don’t know who’s story this is but this is my story almost every word and event. Thank you

  17. Cheri Furr at 5:44 am

    I so admire youtr strength just for the will to live through all this and get through such horrible experiences with unfeeling doctors who should be disbarred! You’re exactly right. We are the ones that have to do all the research about our diseases like CRPS. I got CRPS after having exploratory surgery in my abdomen. From the center incision, he went way to my right side, whete he said I had endometriosis wrapped around my appendix and stuck to my sacrum. He did an appendectomy. When I came out of the anesthesia, I’ll never forget the feeling of Samurai swords stabbing me from the right hipbone down my right inner thigh and foot with burning in my calf. I found at later at the Pain Clinic he sent me to that this was from the ilioiinguinal nerve. Because my right leg was too weak to drive after awaiting the required number of weeks and pain was still so severe, I called the surgeon back. His response was that I probably also had endometriosis in my ilioinguinal canal (the trough where the leg joins the hip), and he should operate again but just hated “to do another operation so soon.” He told to wait until 10 weeks from my original surgery date. I remember thinking he was nuts, and I would not return to him! I consulted my gynecologist, who said the “tiny bit” of endometriosis I had wouldn’t have caused my symptoms in the first place! I had lost 60 pounds in 4 months and could not eat one bite of food or even drink broth without getting sick and had every test there was by a Gastroenterologist over 4 months Prior to the surgery and could subsist only on iced down Gatorade. My gynecologist also said women rarely got endometriosis in that canal, and even if they did, it was only if the canal had previously been opened up because of a hernia. There have been many specialists I’ve seen over the years, and like you, I have relied on my gut when not taken seriously or given some off the cuff advice when the doctor had not even reading my complete medical history. It’s a shame, but we patients HAVE to be our own advocates and follow our instincts when we seek care or treatment. It’s frustrating to waste your time on a bad doctor, but it takes searching to find the right one. Thank you for your bravery and your article. You have reinforced my choice to always follow my gut when it comes to medical care. It requires activism and not being passive.