August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Pain levels, awareness of pain, pain processing

Discussion in 'Pain and Inflammation' started by GypsyGirl, Feb 8, 2017.

  1. GypsyGirl

    GypsyGirl

    Messages:
    82
    Likes:
    136
    North Carolina
    Hi all,

    A bit of a weird question (but aren't they all?)...

    Background:
    A new doc asked me where I was in pain the other day, and like usual - I have to stop and assess ("There is burning pain through my legs, there are diffuse flu-like aches throughout my body, sharp intermittment pains at the back of my head, etc").

    He's not the first doctor who's been surprised that I have to stop and focus on the what/where the pain is. Because it's constant, and there are multiple kinds of pain, I just find it really, really hard to focus on. It sort of drowns out my thinking. And in a way, as a coping skill, I'm okay with that - instead I focus on anything that feels okay, functional, fine, and put pain out of my head.

    I'm realizing this isn't new - I can think back to before I was chronically ill and remember that I was similar in handling acute illness or injuries - I couldn't process pain or sensation really well. I just felt "off" (sometimes when things were truly in emergency mode, with broken bones or extremely high fevers). For example: At one point when I was getting sick enough to consider quitting work, (but also wondering if I was somehow "making it all up in my head"), I had a bone biopsy to screen for cancer. They used some sort of drip opiate, and rather than making me "high", I was shocked because I felt normal - and I realized how much pain I had actually been in for the first time. It had come on slowly and constantly and until I had a comparison, I couldn't describe it.

    So my question is - are you constantly aware of pain? How do you process sensation/pain? Does any of this sound familiar to you?

    This is a frustration I run into with certain kind of doctors. That they think I must be imagining or exaggerating because I have to stop and think, stop and force myself to "process the pain". I'm curious as to whether I'm actually unusual in this.
     
    Last edited: Feb 8, 2017
    Wonko, antherder, Valentijn and 3 others like this.
  2. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    I am a health care provider (not a doctor) and I don't think you are imagining or exaggerating anything. I have specialized in treating Chronic Pain conditions and I can say I have heard similar things from many that I have treated. I am not here to provide treatment advice for you. Perhaps others will be able to share with you their experience and answer you questions personally. My advice, when you run into this type of doctor, if you are at all able, find someone else. Someone who will believe you. They are out there, but not always easy to find.
     
  3. GypsyGirl

    GypsyGirl

    Messages:
    82
    Likes:
    136
    North Carolina
    @Mohawk1995 - thank you for your words. That's excellent advice, and over the past few years, I'm slowly learning to fire doctors. (It had never occurred to me before chronic illness, nor had there been a need to.) I had a wonderful PCP who helped me through the worst of illness (and believed me at the very beginning). Sadly, he suddenly passed away this year, and it's been difficult finding a compatible replacement PCP.

    But my goodness, when I find those good doctors (and other assortment of health care provider individuals), it is such a gift. Finding allies makes managing illness much easier.
     
  4. Mohawk1995

    Mohawk1995 Senior Member

    Messages:
    239
    Likes:
    483
    We just moved away from our most trusted PCP, but I'm working on my new one :)

    I hope you find one soon and in doing receive that gift!
     
    GypsyGirl likes this.
  5. mirshine

    mirshine Senior Member

    Messages:
    469
    Likes:
    1,610
    Dublin, Ireland
    I think it's perfectly normal to have to pause and assess when there is so much pain, and so many different types of pain, all over. I'm in pain all the time, some times are better, some worse. The types of pain take turns or come together. The only way to cope is not.to focus on it. So if you have to describe it all, you've got.to pause and tune in. I would imagine if you explained why to a doctor if they were any good at all, they'd get it. And if they don't, tell them how lucky they are that they don't suffer enough pain to understand it. Sheesh, I get frustrated at some doctors.
     
    Wonko, Mohawk1995 and GypsyGirl like this.
  6. GypsyGirl

    GypsyGirl

    Messages:
    82
    Likes:
    136
    North Carolina
    @Mohawk1995 Thank you, and best of luck in your new doc search (and move)!
     
  7. erin

    erin Senior Member

    Messages:
    740
    Likes:
    2,055
    Very good questions @GypsyGirl, I was thinking about this for a while. I'm in constant pain that I normalize it. It gets more and more and recently it was too much that I couldn't cope. Then I started to think how did I arrive at this horrible place. Maybe I have high pain threshold I don't know...
     
    GypsyGirl likes this.
  8. JohnCB

    JohnCB Immoderate

    Messages:
    348
    Likes:
    2,531
    England
    I do question to what extent we do actually remember pain. I often find that I can recall receiving an injury and I know that at the time it was excruciating, but I have no recall of that actual sensation. I can remember that I was in pain a nd a lot of associated stuff, but not the pain itself.

    Compare this scenario. From nearly forty years ago, I can still remember my child running around while we were on a shopping trip, and they managed to run pretty much full speed into a marble faced wall below a display window - there was a moment's silence and then a loud wail. I have absolutely no doubt there was a lot of pain and that it was a ghastly experience. I can remember the incident quite clearly. Of course I have no memory of the nature of the pain and it's location, e.g. how far it spread. But I remember the event clearly.

    I have a similar memory of coming off my bicycle on a gravel road and losing a lot of skin from my leg. I know that it was excruciating - I remember that as a fact. But I have no memory of the pain itself. In terms of memory of the pain itself, I have no more memory of it than I do of my child's pain. My injury coming of my bike might just as well have happened to somebody else and I was watching, and I remember "ooh, that must have hurt."
     
    GypsyGirl likes this.
  9. mirshine

    mirshine Senior Member

    Messages:
    469
    Likes:
    1,610
    Dublin, Ireland
    I definitely remember pain! Although I suppose I may have minimised the memory of my first childbirth somewhat since I did go again ;):thumbdown:
    I fell out of a tree when I was around 10 and my whole body still shudders when I think of it. Mind you that was worse than childbirth.

    Em, normal pain. Yep no I definitely remember that too.

    I wonder if it's just me or just you @JohnCB :p
    And which of us is better off!!
     
    GypsyGirl likes this.
  10. GypsyGirl

    GypsyGirl

    Messages:
    82
    Likes:
    136
    North Carolina
    To clarify, I do feel and remember pain - but find it difficult to differentiate pain when multiple things are happening. (So first, I may just think, "Ugh, I don't feel right." Then I have to ask why. Then I may notice a piercing headache and aching legs, but have to focus on what else is happening before I notice dull aching in my joints, slight nausea, etc.)

    I think it's probably a constant sensory overload. I tune out to function and have to "tune back in".
     
    voner and mirshine like this.
  11. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    @GypsyGirl, yes, I totally understand this, and have seen that look from doctors when I pause...

    Yep.
     
    GypsyGirl and mirshine like this.

See more popular forum discussions.

Share This Page