Let's Talk About... Pain

Published on 8 May 2023 at 12:42

PAIN

I'm going to be brutally honest on this post, so please don't read it out loud with any little ears nearby, because I am not holding back on the swears today! I've been in a very dark place lately. Not wanting to share my misery publicly, I've held back from writing until the sun comes back out so to speak.  So here I am, a little less miserable, typing fingertips at the ready to write about my favorite asshole, the monkey on my back, the little shadow that never leaves …..pain.

If your FND symptoms mirror my own in this department, then you also have an intimate relationship with pain. It rears it's ugly face unannounced, at any time of day or night, and especially at the most inconvenient times....like when you're trying to function at work, or attempting to fall  asleep. Pain is complicated, it can come in the form of migraines, joint pain, sharp and stabbing, pins and needles, dull and aching, or my favorite form of misery "frost bite in your bones" kind of pain. FND pain can be experienced in one part of the body, or radiate to entire regions/limbs, it can be focused on one spot, or be limited to the entire right or left side of the body. It's kind of an indecisive asshole really.  For those of you supporting an FND warrior please know this; pain is whatever the experiencer says it is, and is as bad as the person states. Every single person will have a unique tolerance to pain, so when they tell you they have pain, believe them.  I experience pain in some form or another 24/7, and most days I can manage ok. Other days, I take a few moments and cry my eyes out.  The worst part of this symptom is that it's invisible to others. 

To look at me on an average day, you would have no idea that I'm experiencing pain ALL THE TIME. It can usually be well hidden, and when it can't be I don't leave the house. Pain can be measured on a scale of 1-10;  1 being "NO PAIN" and 10 being "I'M GOING TO DIE IT HURTS SO BAD.'  Most days, I can honestly say my pain will start out at about 3 when I wake up, and gradually work it's way up the ladder to about 6 by the end of the day. If it's an 8, I'm not leaving the house. Thankfully, I've yet to experience pain in the form of a 9 or 10 with FND. In healthcare when trying to understand pain we use the 1-10 scale, we try to focus in on where the pain is located, and ask questions to patients about what aggravates or alleviates it. This can be one of the most frustrating aspects of FND pain; it just shows up for no apparent reason!

FND pain differs from other kinds of pain; it's not due to injury, or strains/sprains, it's not related to nerve damage (that we yet know of....more to come on that subject in another blog.) so many of our standard pain relief medications don't offer full relief.  For example; I recently went to see a RMT (registered massage therapist) to figure out if it would help with the muscle pain I experience. Unfortunately for me, it was a bad decision. The RMT was great, but for some reason my body responded with some of the most severe brain fog, and muscle spasms, pins and needles, and cramping I've had in months after my session. Needless to say, I won't be booking myself in for a massage any time soon. With FND pain, it really is just a guessing game as to what will work, and what won't. I've tried different kinds of pain meds from naproxen, to acetaminophen, to ibuprofen. I've tried ice packs, TENS machines, infra red lamps, Voltarin topical rub, and nothing really works.  (Remember, this is my own experience. If any of you warriors out there have found a med that helps with FND pain please send me an email and I will share the info with others.) With FND our bodies can send and receive the messages of pain, with no apparent origin.  How do you treat pain that has no obvious cause???? For me this is a million dollar question! I haven't yet found anything that truly helps with FND pain. I have found that managing my symptoms over all does help, and I guess that's a start. 

If you experience pain with your FND, and have found something that offers relief, I'd love to hear from you! Send me an email, and let me know if it's ok to share your knowledge with other warriors. Until next time...

 

 

 

 

 

 

 

 

 

 

Given that my average pain stays in the range of 3-6 I can usually just go about my day and do my best to ignore it. I always hope that keeping myself occupied will just take my mind off of it, but that doesn't always work.

I will say, there are some tell tale signs that the pain is getting to be a bit much and if you look closely you'll see them:  I will go from a normal chatty demeaner to very quiet, pale face, tired eyes, suddenly looking like I'm stoned (i.e. eyes glossed over), taking long deep breaths,  seeming exhausted suddenly, and if you're in my closest inner circle...quietly crying. 

Unless my pain is so severe that I can't hide it from others, I just try and live with it and keep on truckin'. 

If you're like me, you don't share your worst days with anyone other than those that live in your immediate household. My hubby travels for work, and the nest is empty, so I enjoy the misery that is FND alone.  

 

 

 

 

 

 

 

 

 

 

 

 

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