Monday, February 24, 2014

Living with Myofascial Pain Syndrome

Dreamstime stock photo - source

I had a friend remind me last night that it's been a while since I've posted about my health.  (I just looked and my last post was in June of last year - yikes!)  So let me update you.

I went to my last visit with the Osteopathic doctor in Atlanta last August.  The only thing he did on that visit was upset me.  I told him that I did everything he said to do.  I ate gluten free.  I took the gobs of supplements he "prescribed" for me.  And I was still in pain.

His response?  "What pain?"

Um, hello!!  The pain that I've been having for 2 years.  The whole reason that I've traveled 5 hours, 3 different times to see you.  The reason I did $11,000 worth of testing at your office.

So, once again, I re-explained my pain to him.  His response?  "Oh that's just adhesions from your surgery.  There's nothing I can do about that."

At that point I was so mad I couldn't see straight.  So when he told me to keep doing all the same stuff and come back in the winter, I walked out of his office knowing I would not be back.

If a doctor can't remember, between visits, why I've come to see him and nonchalantly waves off a pain that has been majorly affecting my life over the past 2 years, then he doesn't deserve my business.

And for the record, I don't believe it's adhesions.  I believe it's Myofascial Pain Syndrome.  And unlike a lot of doctors (including the guy in Atlanta), I believe MPS is a real, specific condition.  I have done a lot of research on the condition and I find it to have recognizable symptoms that set it apart from other conditions.  Unfortunately there are no cures.  Different therapies have worked for different people.  And some people have had to live with the pain for the rest of their lives.  Not so uplifting, I know.

So who have I been seeing?  Since June I've been going to see a local chiropractor.  I get a massage every other week from her and on the "off" weeks I get a chiropractic adjustment.  She's convinced that she can get me better.  While I know the massages help, I'm still not sure about the adjustments.  What I do like is that, unlike other doctors, she remembers me from week to week and she seems willing to keep trying to figure out what is wrong with me.  She hasn't given up on me like my two physical therapists did.

However, it gets frustrating.  Some days, I feel like I'm starting to feel better and move better and then I try to do something that I haven't been able to do for 2 years.  Something crazy - like hold a baby or sit on the floor for 10 minutes to play with my child.  And then the pain comes back and I realize that I really haven't improved at all.

I might be more pessimistic than usual right now because it's been a bad week for me, pain-wise.  And the worst part is I don't know why.  I think I spend half of my life analyzing everything I've done to see what it was that caused my pain to flare up.  Did I move funny?  Sleep weird the night before?  Try to pick up one too many clothes baskets?  Maybe it was the extra trip I took to Walmart walking around, or the fact that it's 40 degrees colder (or hotter) than normal.

And the truth is...WHO KNOWS???????

I certainly can't figure it out.  What I do know for sure is that it's incredibly frustrating.  I shouldn't have to analyze every movement of every day.  Changes in temperature outside shouldn't affect my muscles like they do.  I shouldn't have to wonder if my side will start feeling like it's on fire halfway through the church service.  I should be able to live my life like a normal 35 year old woman.

But I can't.

It's frustrating to see everyone post on Facebook about the awesome workout that they had and how they lifted a gazillion pounds and did 5000 miles in cycling class.  I love exercising.  It used to be the best way for me to relieve stress.  But I haven't been able to do it in over 2 years.  I should be able to workout and enjoy the feeling of my body getting stronger.

But I can't.

It's frustrating when my children automatically run to pick up things I've dropped because they know I can't bend down well to pick them up.  It's frustrating when I know we are spending hundreds of dollars a month on prescriptions and doctor's visits for something we can't even see or really even diagnose well.

I don't want you to think that it's all bad and that I'm not able to enjoy anything.  I have developed coping mechanisms and, for the most part, have learned my limitations.  I am still able to do things with my kids, just not on the floor and nothing strenuous.  I am still able to have leadership positions within PTA and at my church.  They just have to be administrative positions and not hands-on positions.  I am still able to laugh and enjoy life, just with a more limited set of movements than before.

Living with pain, taking 7 extra pills a day, vising the pain doctor once a month, and guarding my every move have now become a way of life for me.  I pray every day to be healed but if I am not, I will survive.  I don't want to let this thing beat me.


  1. I was just wondering how you are doing. Thanks for the update. Love, Aunt Val

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