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Is MS pain real?

I was so relieved to find this article. Mainly because I have doubted that I truly have MS. Folks talk about MS pain and I over hear conversations concerning medication to ease assorted pains, yet until recently I didn't really understand the situation.

Since giving birth to my now teenage son, I have experienced a strange "strangling" sensation in the rib cage area. For nearly fifteen years I have spent a majority of my summer months and a large amount of money trying to rectify the situation. I really believed it had something to do with the birthing process. I have undergone the weekly chiropractic visits. My insurance has been taxed with muscle simulators. One medical professional even told me that I have a floating rib (Doesn't everyone?) and that my best course of treatment was to avoid certain stretching exercises. (This explanation actually convinced me for a while, especially since this all started shortly after having my son. All that pushing and internal stretching surely was to blamed for this new ailment.)

I am now convinced it was none of the above.

Guess what it was (is)?

The MS hug.

Now, why-oh-why, wasn't this mentioned to me when I voiced my concerns to an assortment of neurologists, pediatricians, general practitioners, OT therapists, even my dentist?


Because they had never heard of it. And those who had were not shocked by my discovery, They simply scoffed at my inquiry into this legendary myth of MS lore, patted my hand, and told me to go home and rest.

The MS hug. It is real. And while not painful to the extent of ER assistance, it is absolutely and totally uncomfortable. 

So, yeah, MS pain is real.

It is painful in weird ways. 

Three years ago my son and I stopped at a local sandwich shop for a late lunch. I ordered my usual vegetable sub on flat bread with hot pepper cheese and fat free mayo. (I really do try to eat healthy)
Two bites into my  meal, I started choking. There was a bulldozer tearing through my esophagus looking for an exit. Tears streaming down my face, I soon (but not soon enough) freed the offensive matter; but not before ruining the mood of this mother/son moment.

I did my best to assure him that I was fine, but quickly agreed with him that we should pack up the rest of our meal and head home.

For the next two hours I silently fought the insane panic of not being able to comfortably swallow. Finally I called my mother and asked if she had time to drive me to the ER for a little check-over.

While there for the mandatory emergency room marathon, I became late evening entertainment. Everyone had a theory. Nurses and physician assistants prodded, examined, offered advice, and did their best to soothe my worries until the ER doctor showed up.

And when he did, things started happening. I drank a solution that could possibly make me nauseous, but would assuredly remove my physical pain.

When I explained what had happened, he smiled his kind Indian smile, and blamed the green pepper in my sandwich. The he advised me to spend more time chewing and to concentrate on smaller bites in the future.

Sound advice. Sincerely offered. Sincerely received.

After that I really paid attention to my swallowing mechanisms. Even smaller bites given enthusiastic mandible action often refused to stay on course. MS  had found a new way to plague my daily life. Even now, three years later, my throat doesn't feel normal.

So, yea, I will gladly play the blame game and give this to the MonSter.

Then there comes the muscle issue. I got really concerned when I realized that I could not curl the toes on my right foot.  I also could not point those toes. My right leg would not extend fully during my daily yoga practice. The last few times I went to the swimming pool, I was terrified of drowning because my right leg refused to to flutter in its expected manner. (This from a fifteen year lifeguard was totally NOT acceptable.)

What was going on?

I had never heard the term spasticity. 

For a relatively educated individual (4 undergrad degrees, MA plus 90), I didn't like not understanding this word. Furthermore, to experience it first hand was not high on my "wanna know more" list.

According to the National MS Society, there are several accepted treatment for spasticity.
  • Baclofen, the most commonly used medication, is a muscle relaxant that works on nerves in the spinal cord. Common side effects are drowsiness and a feeling of muscle weakness. It can be administered orally or by an implanted pump (intrathecal baclofen). Intrathecal baclofen is used for severe spasticity that cannot be managed with oral medication.
  • Tizanidine (Zanaflex®) works quickly to calm spasms and relax tightened muscles. Although it doesn't produce muscle weakness, it often causes sedation and a dry mouth. In some patients, it may lower blood pressure.
Other, less commonly-used medications, include:
  • Diazepam (Valium®) is not a "first choice" drug for spasticity because it is sedating and has a potential to create dependence. However, its effects last longer with each dose than baclofen, and physicians may prescribe small doses of at bedtime to relieve spasms that interfere with sleep.
  • Dantrolene (Dantrium®) generally used only if other drugs have not been effective. It can produce serious side effects including liver damage and blood abnormalities.
  • Phenol — a nerve block agent
  • Botulinum toxin (Botox®) injections have been shown to be effective in relieving spasticity in individual muscles for up to three months.
  • Clonidine — still considered experimental

This information is both reassuring as well as not enough for me.

I needed to be able to curl my toes and stretch my legs, but none of these drugs spoke to me.

So I continue to force my muscles into uncomfortable and nearly impossible positions. It is almost a full-time job, but in order to fight the MonSter, we cannot get lazy.

The more I move, the less I hurt. and I really do hurt sometimes. So, yes, MS pain is real.

Being the scholar that my degrees profess I am, I find that having MS has given me a new lease on the quest for knowledge. The more I learn about my disease, the more pi**ed I get. My questions compound daily, making me aware of the frustrations the medical world must feel. 

All of our pain is not physical or apparent to the world. When I cannot stop the tremors while preparing dinner, my mental anguish is over whelming. When I told my husband to sell my season tickets to our university football games, my guilt at not joining him in an activity that we truly enjoy together, tore me apart. For the last fourteen years I have been busy redefining my life. I am finally fairly comfortable with the adaptations forced upon me. And I usually see these changes as a new adventure rather than an injustice thrown at me. 

Things that have eased my "pain":

* Learning how to knit
* Retiring from a job I loved, but realizing it was "time."
* Writing this blog
* Pursuing my dream of publishing my writing
* Ampyra!
* My son
* Seeing my situation as better than others

Keeping a positive  mindset works wonders, but I do allow those times for a good cry to cleanse my clogged soul.

So, keep your chin up and embrace the opportunity to combat the challenges of MS.

Have a great week!

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