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Sometimes you just need to tell the universe that "IT HURTS"!



  • dilaurodilauro ConnecticutPosts: 13,562
    You talk to them. You explain everything in detail, facts. Always try to leave out the emotions. Professionals, be it medical, mechanical, engineering, etc always want to deal with black and white.

    Its so much easier when you communicate at that level. When ever anyone adds a lot of emotions, it may distract from what you are really trying to communicate.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I've learned so much just watching people, dogs, horses... What we are trying to say be it describing a book we love, an accident where a loved one died or a wish for a future romance, is more often given away by our body language than by our words. Most people by my guess are nervous wrecks when talking to doctors so we avoid eye contact, hide our faces, and do something with our hands. The last thing we are doing well is communicating. We talk to maybe one or 2 doctors a day but doctors talk to 8-10+ patients a day. And we're both human wanting to get out of work, have lunch, do anything but be in that room then.

    Before you go to the doctor try writing out your questions. Keep a journal of what kind of pain you're experiencing, when and where. Bring a friend or relative along to listen and interpret the words you may be too anxious to hear correctly.
    Look your doctor in the eyes. If they are fumbling and looking down, keep looking! Try very hard to smile or make some sort of connection with the doctor.

    If you don't understand what the doctor is saying ask them to say it in a different way or to explain it. Tell them if you learn better by reading or with diagrams. As Ron mentioned, try not to be overly emotional. When we are in pain it's easy to feel vulnerable, angry, upset, anxious. Instead of acting on the emotions tell your doctor, "That makes me nervous" or "I'm angry that you said that like you did." You both want to have the best outcome with the appointment.

    Make sure you ask about anything you didn't understand. Bring up concerns during the conversation and NOT when they are leaving the room. (Practice! We all do those last minute questions!) Keep reminding yourself to breathe. If you still are unsure about something in your appointment when you get to the front desk, ask the person there if they can help you understand or direct you to some resources about the condition concerning you.

    NObody gets the book on how to understand their own medical condition! We feel like we should know something but are embarrassed when we need to ask. The only way to learn is by asking! The more you ask the more confident you will feel and you will understand more.

    Ultimately, if you feel like your doctor does not have your best interests in mind then you may need to find a better fit with a different doctor. And, from what I've learned reading posts over time, learn the policies of the practice or clinic you are going to. If that clinic insists all patients agree to a drug analysis you are included. If the clinic has a policy of not prescribing narcotics on the first visit or first year, know that and know that is not done to punish you.

    Yes, we go into appointments in pain and anxious and we expect that the professionals know this. What they do not know is how you, as a person act when you are in pain and anxious. You may need to explain to make things clear. Doctors want us to be as clear to them as they are with us.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
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  • Plumb tuckered, excellent advice! Every aspect of this is true and I would only add bring a pain journal of date/time meds taken and pain level, one or two written comments of what you feel and what you were doing. It helps.

    About looking the physician in the eye. I want to expand on something I have learned in my 12 years of chronic pain. When you look the doctor in the eye, they see so much more. If you are in chronic pain, you can mask it so many ways..but not in your eyes. They are typically exhausted, teary, frustrated. They, coupled with a calm resolve to explain your symptoms work. When I tell the doctor this, we get to the portion of medicine to help me feel better. This is when I pull out my pain journal. I can easily show the doctor when I had pain managed, flare ups, or no help. From that information we decide what works well for me. It is two partied in that I tell him any concerns of ask questions. I have never asked for a certain drug. I have asked for pain relief.

    Lastly, I have gone into a doctors office all too many a time, masking my pain in an effort to be calm. My demeanor in general is positive and optimistic. When I took my husband for the first time and he saw my behavior, he was aghast. (Told me later that I almost sounded like nothing was wrong.) He spoke up in the office visit and explained in detail the pain he sees me in day in and day out. Had he not spoken up, I would have left the office in the same pain. Because he did, I received better pain management, ie drugs that did a better job to alieve discomfort. My point is, while a calm demeanor is right on.. Plumb tuckered outs advice is imperative: bring a person who can validate your concerns. They should be calm of course too, but I think of my hubby as almost my lawyer in those visits. What I mean by that is he is my advocate trying to explain when it hurts to this doctor. This doctor hears my husband because my husband is a business man, talks in no nonsense vocabulary. so when someone who is perceived as almost an equal to the doctor, the doctor listened to him as much as he did to me.

    It makes me sad when I write that. I am a business like, well spoken, educated woman who should be quite capable to handle a doctor appointment alone. But again, drawing on 12 years of successfully managing pain, especially in these latter years, my doctor appointments are more successful for my overall comfort when I take my husband. I wish we lived in a world where low back sufferers had an easier, worn path. I don't take my husband anywhere else in my life to help me achieve things. And I'm grateful, don't get me wrong. It's just such a shame that it really is the difference of success versus failure of the outcome of the appointment. It HURTS!
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I had a fairly straight forward appointment on Friday the 18th. I needed a new prescription for my glasses. Going there, my biggest concern was if I had brought enough money for what is always an expensive ordeal. But the optometrist kept having me redo the Field vision test. I was there for an additional hour then to have my eyes dialated. (And this was one of the chair eye wear places.)

    So, I left the appointment broke and with OD notes and the name of a opthamologist. The notes cited a frontal lobe defect/lesion. I was told to get an appointment as soon as possible but "don't lose any sleep"! Friday night, no sleep lost. By Sunday panic is setting in!

    While it's not painful, I'm afraid that a new doctor is going to look sat me on my 7 prescription meds a day, three of them schedule 4. I'm terrified of a few things, being told I need to get off all meds, being told the meds are causing a lesion, and then a few things that I have already noticed but I have blamed on the Lyrica. I find it almost impossible to find the right word to say- friends usually help me with this. Aphasia scares the heck out of me- I was a language master. I spoke 8 different languages with perfect accent and taught in school. I love laughing and joking with people!

    It's a different kind of pain, not the physical one but the pain of being called some sort of fake? I have so many medical issues. My beloved cardiologist explained this to me by telling me that a single defective gene can mess with so many bodily systems. He gave me so much courage to let me think it wasn't "all of me" that was messed up! It's one tiny gene with issues!

    I didn't know where to go for comfort. I haven't told my real life friends yet. They will be supportive and I know they love me but I was hoping I could carry on for a bit with the help of my internet friends.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • Ever since my surgery 3.5 months ago I have been in pain. I was not in this pain prior to surgery. It is hard on me and hard on my family. They and others do not understand the pain we feel everyday. And how it has changed us and made us so worried and anxious. These forums are helpful because I see I'm not alone. My pain is the burning type that is in my feet and lower legs. It is worse at night and sometimes I don't know how I manage to get through each day. My activity level is lower and I find that I do less and less of things. I take my percocets for the pain but it only helps a little. Still I believe I need them to manage through this.

    Doctors don't help much. I've seen many and some say just give it more time to heal. Others say I may need a spinal cord stimulator firm the road. And one says I need more surgery. So who is right? Each day I deal with pain That was caused by the surgery. I hope my body can heal itself or at least reach a reasonable pain level. So many of us hope for solutions and fight each day to manage even the basic of things.

    I cannot change what happened to me. I can learn from it and help others to avoid getting into pain. I know I am rambling on here but sometimes I just need a place to vent. I never have been through anything like this. Usually the most pain I dealt with was a toothache fir a week or so. This post surgical pain has been terrible. I need to find the right doctor who us honest to tell me what is causing my pain and if the body will adjust and heal itself or if more treatment is necessary.

    Meanwhile I have to adjust and find a new normal. I have to be hopeful things will get better. And on those real bad days I just need those around me to just be supportive. A hug or a shoulder to cry on helps a lot. Or just to listen. Not to offer advice.

    I hope everyone living in pain can find a comfortable place in their bodies and mind that can still give them enjoyment in life. Pain can consume a person and take away a life. We have to do everything to avoid letting the pain destroy us. Yes it is there and for many of us it is constant but we have to try hard and use every means possible to true do the pain.

    Thank you to everyone who takes the time to read and post here. It has helped me. I cannot go back in time to change how I got here. I can only look ahead and live in the present and make the best of things.

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  • BigRBBigR Posts: 48
    edited 10/15/2015 - 6:39 AM
    I too feel the scream! I had someone ask me once how I was feeling and I explained it to them that every fiber of my being was screaming out in a deafening screech that only I could hear & feel. No one else can hear our bodies scream out in pain. No one else can feel the pain the way that we feel it. Each has their own threshold.

    One of my doctors asked me the "On a scale of 1 to 10" question one time; and I told him that he wouldn't believe me if I could ever convey my true scale. He informed me later on that the pain that I am experiencing is probably enough that many others would crumble under its weight; that the pain level that I have has became my new normal and that my body has adjusted to it now...

    I was asked by a friend one time how was I even walking? How was I able to go to work or even get out of bed? I told him that it was only by the Grace of God that I am able to move at all. This friend knows back pain - he himself has had back surgery. When I showed him one of my MRI reports all he could really do was shake his head in disbelief at what it said and utter a silent - wow.

    The scream is real. The scream is there... Let it out - even via typing it out.
    5 MRIs since 2010 | Severe DDD throughout entire Lumbar Region | Facet Arthrosis throughout | Spinal Canal Stenosis | Herniation L4/L5 | Broad - Based Bulging L1/L2, L2/3, L3/L4 - but still kicking - just not very high. :)
  • I feel your pain. Many of us live with different pain every day. I have burning pain in feet and lower legs every day. It's debilitating. It prevents me from doing so many things. I don't know when or if it will get better. I don't have back pain like so many have. I can only say doing surgery was a mistake in my case. My body has not responded well to the invasive procedure I had. I can't change what I did. I hope my pain gets better and I can find a way to manage. I hope your pain reduces and you find a way forward. We all have to find a way forward. Looking back only creates more frustration and pain. Although it is hard sometimes. Each one of us could of done things differently but we are here living with pain, taking our meds, seeing doctors, going our pt and hoping for a good day. Good luck to all. I feel with you all. I know the struggles and difficulties pain causes. Don't give up.
  • This is the best post I have read. Thank you for sharing. I completely understand:

     "I've tried telling my nearest and dearest but that doesn't help - it just makes him worry more and he gets frustrated because he can't take the pain away. I don't want to burden family and friends, they will all stop for a moment and offer sympathy and advice ... have you tried this or that, or, if you follow the advice in this or that book you will never be in pain again and then they will move on - they have their own trials to deal with."

    I have never tried screaming, although it is probably something that needs to be done. I keep everything inside, which is probably very unhealthy and is adding to my CP, so those around me don't get sick of listening to me melt down at every second. 

    Thank you. Let the screams out! 
  • I started this post in August 2015 because I needed to scream.  Here I am again - I need to scream!  At life, at insurance companies, at incompetent administrators, at trusted professionals who give me new I don't want to hear ...

    I was injured at work in 2008.  The injury eventually led to surgery in 2011. Complications led to more surgery in 2012. A Spinal Cord Stimulator was added in 2013, an abuse of administrative powers led to a severe work related psychological breakdown in 2014, extensive physical rehab in 2015 finally saw me put away the wheelchair,  2015 also brought an unrelated diagnosis of rheumatoid arthritis!  2016 brought new hope with a new medication (and an extra 14kgs /31lbs).  New hope was short lived so now am on OxyContin :( ... All of this (except for the RA)  has been accepted as work related and has been covered by worker's compensation insurance since 2008 without any issues.

    Then comes 2017!

    I get sent to an incompetent doctor for an assessment of my fitness for duty (no biggie ... I get sent for these every now and then... ).  Without looking at scans or doing any physical examinations, this doctor reports that he can find no ongoing evidence of any injury either physical or psychological and that, in his opinion, compensation for medical expenses and incapacity payments should stop! This particular doctor has no qualifications in orthopaedics, neurosurgery, pain management, psychology ... in fact he is barely more than a general practitioner!  Of course the first I know about this is when I am told that compensation is about to be stopped!

    So now I am fighting to get compensation reinstated. I am still unable to work and my incapacity payments are the only means I have to support my family.  So now I am now using my sick leave, annual leave etc to keep the wages coming in while I get this sorted.  So far Round 1 went to the insurance company.  They prefer to believe their doctor over mine because he is slightly more qualified.  It appears that I brought a water pistol to a gun fight.  Round 2 - I'm going to bring a Gatling gun!  Saw my Neurosurgeon today - he's way more qualified than their occupational physician and is going to write a good report that should undo all the damage that the Occupational Physician did.

    Bad new for the day though is that my Neurosurgeon looks at latest scans and tells me that I am going to need further surgery and that without it I am likely to loose even more function in my left leg!

    Also took the dog to the vet for her annual injections and a geriatric check up a couple of days ago and - after running some tests the vet was very sorry to tell me that my beautiful but aging furry family member has cancer of the liver and that she doesn't want to operate because our old girl will likely not make it through the surgery. Now the dog has a healthy supply of her own pain meds to keep her comfortable as she slowly fades from our life.

    All I have wanted since I got hurt in 2008 was to find a way back to a normal, happy, healthy life!

    Now - All I want to do is scream at the universe!   Pain is never controlled, quality of life sucks, I am so tired of struggling and just to top it off I am going to loose my beautiful Sasha dog some time in the next couple of months.
  • SavageSavage United StatesPosts: 7,385
    Wow! So sorry for all you're going through!
    A good point  is that the neurosurgeon will write his report which should carry a lot of weight!
    Esp since, sadly, you require another surgery so you don't lose a limb.

    It is enough to deal with pain and the accompanying issues, and feeling so vulnerable...and then to advocate for yourself to keep a roof over your head and food in your home...wow!
    Obviously, I am mistaken...but I thought an appointment was made for forms to be filled out and practitioner looked to you for input on how things are going.

    And to not be notified but compensation just stopped....I have no words. The procedure just seems very wrong.

    Of course, there is no good time to discover our beloved pets are terminally ill, but to have all happening at once certainly strains the emotions.
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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