What do you call it?

Home ThinkSpace Week 4: Pain Management What do you call it?

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  • I’m not sure when I realized the pain I was experiencing was more than it should be. What really left me confused, though, was how to describe it. How to explain that my eye felt like it was on fire, but the rest of me was freezing? What about the days when it felt like someone was knitting in my eyebrow? What was the difference between pounding, pulsing or throbbing and aching? Even though I knew serious was happening, it took me a very long time to find the language, the words to describe it – to myself and to other people.

    What types of sensations do you have that you have trouble explaining to others? For example, do you experience tingling or burning pain? Do you feel like spiders or ants are crawling on you?

    #bodysensations #tingling #burning #spiders #poundorpulse #lookingforlanguage #whatstheword

    Samantha Kaplan
  • Oh my! I’ll try to limit myself to only a few for you all. I could go on and on. Sometimes the combination of medications I’m only removes the sensation of pain and my body is still under the stress and influence of the pain. I’ll be walking around with my fists clenched, arms crossed tight to my body and grimacing not feeling any pain, but clearly bodily reacting to it. Then there’s trigeminal neuralgia. A razor blade sawing back and forth inside the roots of my upper molars, connected to an electrical current. A toothache in my eyebrow. “Stuck” facial nerves that pulsate with overwhelming sensory pain until they slowly relax, feeling much like an unclenching fist. How can it be that I feel numbness and burning in my hands and feet at the same time from peripheral neuropathy? Watch a Star Wars episode where the dark side wizards shoot electricity from their hands and I know exactly what their hands must feel like.

    Dear Body Listening Project, I wish I didn’t have to listen to mine. Oh and I have tinnitus, also!

    • Zepplin, please tell us more about how the pain might be gone, but you still “feel” it. I connect so much with your image of the unclenching fist – whenever I take my medication there’s the moment when the pulse or throb starts to dissipate.


      Samantha Kaplan
  • I have widespread and difuse pain. I also have what I have read on forums called “mutagenic” pain. I take this to mean pain which morphs from one type to another, from aching to stinging, from tolerable to untolerable, etc. I noticed last fall that I had my arms crossed all the time, applying pressure to my torso and clenching my fists under my armpits. I often apply the acupressure point to my thumb’s web, but this was a more intense body wide effort. I had been in pain for a long enough time that I just chose to stop listening to it, however my body could not stop reacting to it. I have had gabapentin affect me in this exact way, also.

  • I’ve been coping with pudendal neuralgia for several years, among other things. I’ve gotten pretty good at cataloging my pain so that I can understand and recognize it. There’s the dull ache, there’s the burning, there’s the razor sharp cutting pain, and there’s also this strange pulling feeling, like my fascia is about to rip apart. I feel all of these things to different degrees at different times, and in varying combinations. By working on my vocabulary for describing them, it familiarizes them to me and has also helped me pick out sensations that are new or atypical or extreme. This is very helpful to myself, but what I still don’t know is: does the language I’ve chosen for describing my pain make sense to anyone else? Does it help a health care practitioner really know what I’m feeling? I keep hoping so.
    #familiarizepain #whatsinaname

    Rachel Carriere

    I want to share that my experiences with cancer and pain connected to this disease and its treatment also involve different stages of mental healing.  To simplify:

    1. Shock – why is this happening to me?

    2. Fear – what’s going to happen next?

    3. Coping/acceptance – is this the new normal?  Will I always experience pain?  What can I do to get my life back/return to normalcy?

    4. Grief – why did my body let me down?

    5. Guilt – how come I am responding to treatment and others are not?

    6. Heightened awareness – moments seem to count more, I am more aware of various aches and pains.  I am much more aware of how cancer has affected so many.

    7. Normalcy – more aware that not every pain is associated with cancer/treatment, back to living my life.  I am more accepting of the present and see my body as not letting me down but getting me through this.

    8.  Cycles – periodically, especially before a lab test or scan when I’m awaiting results, the old feelings come back, but cycle through much faster

    I hope this is helpful.

    #Mental Healing

    • Such rich insight! You’re really onto something with mental healing! Your comment about “Grief – why did my body let me down” resonates with me. When I started experiencing migraines multiple times a week, part of me didn’t want to seek treatment because I had to acknowledge that my body had “let me down” so to speak. I certainly identify with your other stages and still struggle with this! I feel betrayed by my body at some points, but I also have to learn to forgive it.

      #mentalhealing #bodybetrayal #forgivethebody

      Samantha Kaplan
  • Samantha,

    How kind you are to take the time to respond and share!  Yes, learning to forgive and getting self confidence back takes time and periodically ebb and flows, that’s for sure.

    Thanks again!!!

    #mentalhealing #bodybetrayal #forgivethebody

  • For me I have learned to manage pain by figuring out the precursors to the experience of pain.  Being able to notice what occurred before the onset of pain has helped me mitigate the onset of pain.  I found that attending to the tensions of my body and then addressing that tension by receiving massage/bodywork, acupuncture and/or chiropractic interventions I was able to prevent the onset of pain.

    For me body awareness is all about #listening# to the #subtle and not so subtle signs# #telling me that something is up# and I’d best #attend to it#.


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