Please let me know what you think about the article by posting a comment on the medium page or here in this discussion thread. Your feedback is highly appreciated. And please also let me know if you come across any typos or grammar mistakes. As you might have guessed already, English is not my native language ;-)
I hope the article will increase awareness about using the right tools and drive more members to our community.
Kind regards and thanks a lot for your support, Daniel
I like your article. And being able to draw and not having to rely on words and numbers is why, out of all of the free pain tracking apps on google play (yes i downloaded all and tried them), I kept catch my pain.
SUPERB! Very well written piece Dan... (i knew it would be!) I understand completely... as i always look so much better at doctors appointments... until one day... i went to an appointment in my pj's...no makeup... birds nest hair doo... i looked shocking... just as i am in between those good days... and finally my doctor understood... and referred me to the pain management team! (I had no clue they existed either!)
I love this app too because of the pain drawing! Its brilliant & i tell all my medical team about it!
Very good point you make. My husband has arthritis and a bulging disc in his neck. The day he saw the specialist his pain was only a 2 so the doctor decided not to do an injection for pain. He is still suffering. No meds help. Some days his pain is a 9, but no relief in sight.
I read your first article, and it was spot on. The Pain Scale is a pain in the back side some days. I would tell myself to wait wait to go to my doc, then finally unable to stand the pain, make that appt. The next day my pain is less. So I cannot honestly hit that scale when I need help! I will look forward to reading more, doc!
I like it! That stupid pain scale almost got me killed. Following a miscarriage, subsequent slowly increasing hcg, and strict instructions to go to an emergency room with any severe or persistent pain, I went into emergency after having persistent pain that had been increasing for the past 12 hours. The doctor asked me what my pain was. I'd gone through labour 13 months prior which is certainly a 10 and a miscarriage less than a month before which hovers between 6-9. To me, the ectopic pain was a 6, sometimes 7. The emergency doctor told me I was having severe menstrual cramps (even though I was not bleeding, it was one sided and I had one very tender spot) and to go home and take ibuprofen. That was a Friday afternoon. Monday morning my family doctor called me after seeing the emergency report before the clinic had even opened. I had the pain all weekend but didn't want to waste my time. By the time I got ready and drove there (about 15 minutes), she had consulted with an OB in the city (I live an hour away in a small town). She checked me quickly and sent me to the city. I was seen by the OB immediately upon arrival, had an ultrasound to determine exact location and size and was seen immediately by the OB again and given options for treatment. Both the OB and my family doctor told me that even one more full day and it would have ruptured and likely killed me.
I think it is so important that physicians ask the right questions at the same time patients advocate for themselves and seek to be fully understood. Thank you for your gift of not only being a physician but also writing and educating. It's people like you that have my back :)
I am glad to hear that the article hit the target. At the same time it saddens me that we all had to deal with the same problem.
@CDNgirl37 I am so glad you got saved in time. I absolutely agree that not only the doctors need to ask the right questions and use the right tools, but also patients need advocate for themselves and educate doctors whenever needed.
Great article. The pain scale is antiquated and needs to be done away with. A 3 to one person, might be a 5 to another. I can keep composed all the way to an 8, and that fools everyone. It's taken years for me to get to the point where I can remain calm when pain is >8.
Great article, I agree 1000%. I visited umpteen doctors and was facing reprimandations at work for missing so much time. The surgeon who completed both my back surgeries didnt want to hear that something was not right with my back. I finally called my primary physicians office were I have gone for over 25 yrs. The office manager refered me to a pain clinic and it was the very best reference I have ever had. Finally someone who understood pain.
Thank you Dan!!! You wrote a fantastic article. I'm currently trying to get it by email so I can print and share with my Doctor, would that be OK with you? Or should I go about it some other way? Sincerely, Carly
Thank you. Your work is very much appreciated by all of us here, I'm sure. Your article is spot on.
Daniel, have you written anything on how to educate doctors & patients about: Patient Missing Appointments, due to Sx of the illnesses for which the doc is treating them. It has resulted in 2 docs refusing to see me. Severe memory loses, extreme anxiety, confusion, fatigue, and Pain, have kept me from appts.
It's not in this thread but I would very much like to know your thoughts. Or should I start a new thread??
@Dilapidated4Now Sure, please feel free to print and share it with your doctor. Let's raise awareness :-)
@mamish: I am from Switzerland and our startup is currently based in Zurich.
@autoimmunes: I haven't written anything yet about missing appointments. I was lucky enough to be able to attend all of my appointments and have no experience with this topic. Starting a new thread is a very good idea.
Daniel, please write about the fybro fog. In my case, i don't just forget things, but just completly erase them from my life. It's like having moments of auto pilot, so i don't register anything or any one. Also, if for example, my husband calls me to ask me to call the plumber (because it is urgent and he's working), i say yes of course as soon as we hang up, and then even though it is in my mind and i know it is urgent, still i don't know why, but i just remaind there not doing anything!!!!!! Also, it happend today, i went to the wrong medical building, or i'll go to the wrong doctor.... it really is like your brain just doesn't have a thinking process. I don't know if it's just me, but it is really annoing. And it is the only thing my family, specially my husband, can't understand. They think that i just don't concentrate or that i don't care😟😟
Loved the arrival you wrote. Spot on!!! I screen captured my pain body drawings from here and print them out and carry it with me in my emergency folder as well as a pain scale I found as I stated in another discussion. I try everything to get my point accross to doctors.
The call to action for physicians is to apply a holistic assessment for the patient when using the pain scale. The use of a pain scale is not intended to pinpoint pain at a moment in time but more importantly capture patterns and trends relative to other variables (mood, treatment, medication, sleep, activity) that provide specialists with a better evaluation to make more informed medical decisions off.
Communicating your pain is incredibly important for navigating the chronic pain journey to finding treatments appropriate for your condition.
The article has some interesting points and raises concerns around the quality of care patients receive - however, I think the opportunity is to educate patients on how to effectively use the most broadly used tool in pain management to their advantage... that is what the power of mobile apps and regular tacking can provide and this app helps with
Willing patient. Unwilling doctors. Not even my pain management clinic. One suggested it but only looked once afterward. I have offered scale to every one of my five main docs but they don't look -have been keeping mine for many months.
I never even considered that Drs continue to disbelieve their own tools-why enter medicine? Perhaps it's pay and recognition? It is very little to do with us but we cop the torture and resulting disabilities. Thank you.
I am actually afraid of pain clinics... we have this phobia of "opiate abuse" running wild, and the first thing an ER asks is do you have a "pain contract" whatever the heck that is... with signs all over saying they don't give painkillers to "pain patients" at th ER, etc... I would go when the pain indicated a new tumor or other emergent situation... but twice now they failed to find a cause for it and I am afraid of being labeled a drug seeker or worse. I don't go to get pain relief! I go if I think it is an emergency. I have doctors for normal stuff!! I am literally afraid to seek "pain help" lest I get drawn into this crazy paranoia they have about it!