Impossible Pain

Impossible Pain

By Angelika Byczkowski.

I had my first outpatient surgical procedure when I was still in high school and needed a plantar wart removed from the sole of my foot. As the doctor injected the area with a local anesthetic, he explained he did these procedures all the time and I wouldn’t feel a thing. After a short wait, he began to dig out the deeply embedded wart with a hooked scalpel.

With the first cut of the scalpel, excruciating pain exploded in my foot and I was shocked speechless. I froze, paralyzed, terrified that any movement would jostle that knife digging into my flesh. Meanwhile, the doctor and nurse were cheerful and relaxed as they went about this routine task, knowing I was numb.

My first meek protest of pain was met with a friendly, but firm, “That’s impossible because the whole area is completely numb.” I had no idea what was going on, couldn’t even explain the pain to myself, and without some coherent argument, I was too intimidated to complain.

Angela Byczkowski

I was a well-behaved kid who had been trained to obey authority figures, and the doctor was clearly the expert in this case – and he had a knife in me. So I concentrated on remaining absolutely still as the incredible pain surged again and again with each cut of that scalpel.

Unknown to me and everyone involved, the anesthetic was completely ineffective. This is one of the more peculiar symptoms of Ehlers-Danlos Syndrome (a genetic connective tissue disorder), but I was not to be diagnosed for another four decades.

I was in agony for those 15-20 minutes, sweating profusely, and I fainted as soon as they sat me up afterward. But I still believed it was my own fault that it had seemed so painful. I told no one because I knew they wouldn’t believe me. How could they, when I wasn’t even sure I believed myself?

The same thing happened when I needed stitches a few times. The doctors injected a local anesthetic, waited a while, and then simply went to work. I felt each stab and push of the needle, the thread sliding through my skin, and then the tug of tying the knots. Because this procedure is known not to hurt, I didn’t complain about the fierce pain, but stayed still to wait it out.

All the authority figures around me were always absolutely certain I was in no pain, no matter how intense it felt to me. If I did mention it, they said it was impossible because they had numbed the site, and kept doing whatever they were doing.

What else could I think but that I was crazy?

Finally, at the age of 54, the mystery of my pain was solved when I was diagnosed with Ehlers-Danlos Syndrome. EDS is a genetic connective tissue disorder, leading to weakness and damage in the body’s collagen scaffolding. From individual cells up to muscles, bones, and organs, all my body structures are weak and prone to damage because the tissue holding everything together is defective.

It was only after my diagnosis that I learned people with EDS are notoriously unresponsive to local anesthetics. Now that I know my pain was always real, I’m angry at myself, angry that I passively allowed myself to be hurt, angry that I didn’t insist and resist.

But how can doctors believe such a patient’s complaints of highly unlikely symptoms that cannot be explained, observed, or verified?

When a patient contradicts what they know to be true, many doctors default to the seemingly obvious response: “that’s impossible”.

Yet, no matter how much we know about a patient’s physical condition, we can never be certain about what’s going on in their body. Statements with words like “always”, “never”, or “impossible” are bound to be wrong sometimes in the practice of an inexact science like medicine.

For some of us, “impossible” pain may be possible after all.

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Authored by: Angelika Byczkowski

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dan

This is 2 of my favorite Dr responses. You look fine and Your symptoms are not medically possible I feel your non number pain, having been awake during surgery and they wouldn’t stop.

Peggy

The last time I had dental work was about 2001. It was supposed to be a routine root canal. The dentist said I had been given the amount of novocaine that was maximum for a 300 lb man. It didn’t work and I was told that the next time I needed dental work that I would need to go to a dental surgeon that could administer general anesthetia to put me under.

I now need a dental surgeon that can remove the rest of my teeth after having suffered from a vitamin D deficiency that ruined what teeth I had left. I’m not looking forward to the aftermath of pain but will welcome the dentures so that I have enough teeth to be able to chew food better than I can now.

Christine Sparks

Thank you for sharing your story here and God bless you for what you’ve been through!

Kathleen Kaiser

I had a very similar thing happened to me in the dentist chair. It was later explained to me that the nerves in the gums with some people are not always where they can be expected to be so even though that give you an injection in what they believe should numb you it does not always do so in the place that needs to be numb. I don’t have ehlers-danlos I just have this problem with my mouth. Now instead of just crying the entire process I tell them upfront about my condition and I forced them to make sure I’m numb before they start.

Geoffrey Nielson

Please ease my pain about where my posting is.
Be blunt as hell, for I know pain from people can be worse than the untreatable, untestable WELLNESS issues I face.

Elaine A. Weber

I too have had the same experience with novacain injections for dental and medical procedures. I get so upset when Dr. and/or nurses don’t believe me. I’m not a frivolous
child, I know when I feel pain,,, so I very much do not appreciate the disbelief of my pain.
My biggest complaint about FMS is the tiredness I am forced to deal with during the day. I hate how it makes me feel.. As soon as bedtime comes,,, I’m wide awake. I toss and turn and struggle to sleep every night. It’s a frantic circle of pain, sleepiness, pain, sleepiness,, and on it goes.

Carmen

Oh Angelika, such a horrible experience that you had to go through and for so many years at that. It is now a very valuable learning tool that we can share with each other in explaining the various diseases and how the human body reacts (or more specifically, doesn’t) given a persons individuality in how medication metabolizes.

Terry

I had to have an implanted port taken out in April due to having an undiagnosed UTI and MRSA in my blood!The surgeon came in and proceeded to numb the area and I told him I wouldn’t numb up well due to Lupus! I had the port in for 26 years( which all the Dr.’s said I had mine longer than anyone else. You can imagine how much scar tissue was there after 26 years! He told me it would take no longer than 8-10 minutes to remove. It took him 45 minutes as he would cut the scar tissue and then try to prise the port out as it was close to my collarbone and a very tight fit! I screamed the entire 45 minutes he was removing the port! If I’m ever faced with something like this or similar I will not go thru something like this!
Dr’s., have no compassion much st times for anyone or that’s what I’ve run into!

Doctors are told in medical school that ‘when you hear hoofbeats, think horses, not zebras,
as a reminder that common symptoms generally point to common conditions. Way, way too many take it to mean that zebras –uncommon conditions– do not exist. They are incapable of understanding that statistical probability isn’t applicable to individuals, i.e. that if only 1 in 10,000 people get “X,” then the person in front of them can’t be that one. So people like Angelika suffer needlessly for decades, both physically & emotionally, because medical “professionals” don’t believe that they don’t fall within “normal” parameters.

Angelika is one of the best & brightest voices of all, and does the entire EDS & chronic pain community incredible service with her outstanding blog; it’s an invaluable storehouse of information & rebuttal of disinformation, with thousands of insightful posts and growing. And she does it while in constant pain. Share her story everywhere. Share her blog. https://edsinfo.wordpress.com/about/my-chronic-pain-story/

Heck, I wish SHE could get a major post in the government health care system in charge of policy, though I suspect she’s got too much integrity & honesty to qualify (or tolerate the BS)…not to mention too many smarts.

Janet Oney

Thank you for posting this. I learned something I didn’t know about EDS.

Alex

You are 100% correct that words like never or impossible should be left out of the medical discussion. I have experienced very similar things and since we are of similar vintage I would guess that your syndrome had not even been named at that time. I know mine wasn’t even though it was first encountered during the civil war (in this country). I still face these sorts of situations when I tell medical professionals that I have a Complex Pain disease. They look at me and make statements like “You don’t look like you’re in pain” or “Well it can’t hurt that much because you have a smile on your face”. People just don’t get it. Just like you sat in silence and wondered if you were crazy because it hurt like hell and you were told it didn’t. I’m sorry you kept quiet, but I understand why you did. I probably would have done the same.

cindy grossman

What a nightmare.
But, there are so many instances of docs telling patients that “it’s all in your head” or “that’s not possible”– especially when the patients are women.

Clearly, EDS is something that should be taught in medical school as existing, along with information that there may be other conditions, known or unknown, that can cause unusual responses, side effects, symptoms, etc.; and they need to be taught that providers need to listen to patients’ complaints and take them seriously.

I’ve had some extremely extremely rare side effects from various meds and supplements which have caused problems due to provider unawareness.

In fact, for simple magnesium, which I’ve been advised to take by a few providers, my reaction is the opposite of the intent of the supplement — my fingers cramp up badly overnight if I take it daily as I’d like to. I’m incredibly lucky that I mentioned it off-hand to my then-nurse practiioner pain manager, who is the only provider, out of many, at that time and since then, that was aware of this issue. If she hadn’t known, most likely I’d have continued with daily magnesium for decades and not known why my fingers cramped. My current PCP and pain manager, who are both excellent, and who have helped me with issues no one else ever did, were shocked when I told them why I limit my magnesium intake.

Maureen M.

Excellent post and explanation of EDS Angelika. Thank you. Keep strong Warrior!!

Hayden

Very informative. Did not realize that local anesthetics were largely ineffective for patients with EDS.So the moral is for pain management patients to keep pushing back because the “experts” truly believe that ALL pain can be effectively managed with the same dosage of medication. What if the shoe was on the other foot…….. “experts”?

Mary Cremer

Good article. Yes, we all process pain differently. With Ehlers Danlos, I notice that the duration of pain meds is about 1/2 the time of effectiveness as other people because we metabolize differently.

Wendy

Reminds me of when I had an epidural steroid injection for sciatica. The pain was excruciating & the doctor was unsurprised though hadn’t mentioned I should expect it. The procedure made the pain worse & the doctor said he’d never heard of that. I said maybe he should report it so others could learn about the possibility & he was insulted. After reading this column for a year, I have learned that is common to have the pain worsen & I am lucky I didn’t get permanent damage. So the doctors probably wouldn’t have believed you anyway. Why did they think you fainted?

Angelina,
While there’s nothing I can do or say to change your life,I do empathize.
We can only hope “they” come up with a solution for any future procedures. At least now they’ll acknowledge you are dealing with it.
Love and Light
Billy

Cheryl

I am so sorry you had to experience so much pain from doctors who thought they knew it all. I hate it when doctors compare my medical situation to other people I am not other people I am me. Because others may experience one thing doesn’t mean what I experience isn’t TOTALLY different.