Monday, May 11, 2009

No, It's Not Like Stubbing A Toe...

Many months ago, I made reference to writing a "Pain Post"...I never got around to it. But now that I am experiencing significant pain once again in my body, it seems to be the topic resurfacing again in my mind. So, here you go...



Sometime during the first year's of my MS diagnosis, I had a strange and frustrating conversation with an acquaintance of mine (I'm pretty sure they don't read this blog and, based on past conversation, I'm not even certain they CAN read! You'll see what I mean...). I was experiencing nerve pain in my left leg that was creating a great deal of distress. In the course of the conversation, I attempted to explain in generalized adjectives and analogies what *nerve pain* felt like to this acquaintance. And, in response to my pain description, said acquaintance replied, "Oh, kind of like stubbing your toe". **THUD**




For those of you who HAVE experienced MS pain, I'm certain you can recognize just how discounting the *stubbed toe* remark felt...as a matter of fact, I also imagine you'd have had the same inner conflict I experienced in that fateful moment of conversation: Whether or not to allow this completely ignorant imbecile to live and breathe another day! And, for those of you with MS who have never had pain as one of your symptoms, I applaud you and I am envious...the gods have surely smiled upon you and shown you mercy...or, you lived a much cleaner past life than I did as Karma has a way of demonstrating. LOL




The origins of MS pain remain vast and quite often a complete mystery...sometimes the pain is due to muscle contractions, fatigued muscles, lesions directly located on the nerves (such as in optic neuritis - pain in the eyes), muscular compensation (when a muscle group over works itself because another muscle group is weak), medication side effects (no explanation needed), urinary tract infections (due to MS bladder dysfunction), trigeminal neuralgia (nerve pains in the face), the MS *Hug* (tight banding that can occur in the trunk for unknown reasons, but classic to MS), and a host of other *mystery* pains unexplained.




True "nerve pain" carries no specific adjective for description...it can present as dull, sharp, aching, piercing, agitating, burning, icy, intense, constant, tight, banding, contracting, etc. Speaking only for myself, sometimes my nerve pain feels like a glowing, red fire, burning or smoldering in my deep muscle tissues. Other times, it can feel like an icy, cold hand left stuck in a snow bank for 30 minutes, feeling as if the chill is radiating from my bones...it is ALWAYS constant and always present with varying degrees of intensity. On occasion, my "nerve pain" can feel like sharp scalpel blades being jabbed into my flesh...highly intense, but lasting only a few seconds or minutes...these pains generally catch me completely off guard and unexpectedly leave as seemingly disconnected to any reason as how they arrived. At other times, my nerve pain aches and pinches me...not intensely, but constantly...gnawing at my constitution and agitating my mood. And still at other moments, it can feel as if my skin is raw or on fire.




MS PAIN is soooo not like stubbing a toe...because when one stubs their toe (or at least from my PERSONAL experience of this), there is the initial sharp, intense pain of injury, usually followed by a period of throbbing. Toes heal...pain subsides eventually...and the mind knows this will occur EVERY time. With MS PAIN, there is no guarantee the discomfort will EVER end and sometimes it doesn't. The mind has no ability to predict or justify the pain, which often only serves to complicate the discomfort even further. I often feel highly agitated emotionally, which seems to coincide with my nerve pain...it's as if whatever is triggering the physical discomfort is also working in tandem with my emotional body...both feel quite out of my control and generated by causes of an unknown origin. This "emotional component" is often the most difficult to describe to the inexperienced. It is as if a switch gets thrown in my brain, sending out those same signals that occur spontaneously when one is over taken by laughter or tears during a movie...there's no REAL connection to the sadness/mental anxiety/laughter...it's just a movie after all...yet somehow the physical body responds as does the emotional body. I rarely can EVER explain why I FEEL emotionally the way I do with MS PAIN...it just is.




MS PAIN is not like stubbing a toe because it frequently sets up a vicious cycle, creating problems or discomfort in other areas of our lives. Sleep often becomes disturbed, anxiety takes over due to inner conflicts, the ability to cope is decreased, and these components tend to only INCREASE the pain, which intensifies the other issues...and on and on it goes...where/when it will stop, nobody knows (wasn't that some line from a children's song?!?) I put together a little, visual chart for all y'all which might better demonstrate the cyclic nature of MS PAIN:
Currently, I am experiencing fairly intense pain in my body...my legs ache in my bones, my right arm feels like the flesh is raw or on fire, and my waist and chest areas feel like I've got a tightly wound ace wrap applied. My mental/emotional body switched into high gear also after days of insomnia (superimposed by my work schedule), quite possibly setting up this pain cycle, and leading me down a dark path of fear and sadness. I don't FEEL well...physically or emotionally...but I have no idea which is the chicken or which is the egg, let alone WHO came upon me first! I only know I have no control over this current episode/possible relapse/moment/self-induced drama, and this causes me fear (see inner area of above chart for detailed explanation). I once again do not know WHEN or IF this current episode will end OR how much havoc it will stir in my life while it occurs...and the emotional conflict I feel in balancing my guilt over possibly consciously CAUSING this to occur (because of work/schedule issues that also *seem* out of my control, but possibly more driven by bullheadedness and pride) and ACCEPTING I have no control over the course, now FEELS overwhelming.




Neurontin or Lyrica...these are the suggestions for pain management made by my *never-seeming-to-tire-from-my-constant-whining* neurology ARNP...neither choice is appealing. Lyrica makes my head spin like a top and Neurontin (otherwise known as *neurotten* in my circle of MS friends!) causes me to feel like air is blowing through one ear, passing through my mind, and out the other ear (could have probably just said "like an airhead"). These choices anger me...because this is the best "we've" got...I've tried everything from narcotics to seizure medications in the past and there is little that even takes the edge off this type of MS PAIN. Pacing seems to be the only physical, short term remedy for the pain in my legs, but one can only walk so far and in so many circles...AND, being upright for long blocks of time causes my CHEST AND WAIST to feel tighter~! Pacing also seems to only agitate my insomnia (hard to really sleep when walking, unless of course you're a sleepwalker...argh, argh)...vicious cycle.




So, in closing (betcha thought I'd NEVER get here!), NO, MS PAIN IS NOT LIKE STUBBING A TOE...But I'm considering attempting to stub my toe to get my mind off my MS PAIN for awhile!!! I'll let you know how that plan works out for me... :-)

15 comments:

Have Myelin? said...

Yeah. That too. :-{

Shauna said...

Have to admit, I've been there, done that. Some drugs work for some, not for others, but describing what you're feeling is soooooooooooo hard.

Distraction is actually a method I am able to employ sometimes. I don't actually stub my toe, but the application of heat seems to help from time to time.

S.

Webster said...

Also, similar to what Shauna said, substituting a different sensation from the one that's causing distress may help - like pressure for the "hug," or cold pack on the itching. Must. Experiment. I've heard that a certain illegal drug helps with this. (read Herrad's Blog)

I just hope this isn't a 24/7 experience for you, because that would truly suck. Must go Zen in that case. Or try becoming a cutter -- whichever.

Webster said...

Oh - at least you didn't get the shingles. That's good - isn't it???

Kelley said...

Linda,
I hope you find some way to deal with this vicious cycle and SOON.

Peace,
Kelley

Kelli said...

I loved the visual chart. I still don't think anyone but MSers will get it though. Call me a pessimist.LOL I hope your cycle breaks soon.

Anonymous said...

THANK YOU for this blog! My name is Charlie I am in process of diagnosis of MS. 98% sure at this point I am male, 43 and cant stop crying because my body feels like its comming apart, its beecoming harder to ytpe every week. Blogs like yours are giving me courage ,and hope I wish you all health, and happiness, and THANK you ALL for sharing.

PedstrianCrossing-Colleen said...

Cheese-

We all want you better! Here's hoping for a quick bounce back...

Ah, those sympathetic, thoughtful people in our lives! I was telling a co-worker about my dx and she changed the subject to tell me how much having a mole removed the previous day still hurt. Stubbed toe indeed!Sometimes you just have to laugh at their idiocy.

So far, Lyrica works well for me.

Lazy Julie said...

Thanks for writing this. I am fortunate not to regularly live with pain but I can completely and totally relate to the frustration you expressed so eloquently about people minimizing MS stuff. You know, "I am struggling with fatigue" and the response, "Ya, I'm tired, too." or "The heat is really sapping me" and the response of "Yeah, my central air is only barely working in my closet." :-)
Julie

Sarah Ann said...

Thanks for sharing this valuable blog post.

I help manage an online support community for people affected with Trigeminal Neuralgia. If you have come across this site in search of support and kind words from others like you, stop by and say hello: http://www.livingwithtn.org

Blindbeard said...

This post was a combination of Brain Cheese and Lisa Emrich, and I am saying that with the highest compliment intended. Funny, informative and written at a level that shows your intelligence (hope that wasn't something you were trying to hide, because you don't do a good job of it).

Lisa Emrich said...

I so totally agree Blindbeard. Braincheese does a horrible job of hiding her intelligence. I think that she is the information guru of us all. Long life Braincheese, but not her pain. Let that die a quick and certain death.

*jen ~ Fifty-Cent Head said...

Yes. Exactly. Thank you!

xoxo
*jen

Thumper said...

I have recently found I have MS and reading your description of the pain associated with MS, it was like I could have wrote this myself. There are so many people that don't have a clue, or think it's all in my head. Will look forward to reading more of your blog. Thank you.

carole emigh said...

I so relate to what you are describing. Lupus diagnosis 1992, ms diagnosis 2004, transverse myelitis (TM)2012. All my pain would come and go in intensity until the TM. I have many additional lesions in my brain and spinal cord and the pain is almost constant and growing. I found you a sister Leo and am looking for pain management ideas, techniques. THANK YOU for sharing your story, it helps.
Carole Emigh (pronuciation Amy)