Damn! I Have Fibromyalgia. Now What?

Damn! I Have Fibromyalgia. Now What?

It’s been 5 days and I don’t know how many hours since I found out I have Fibromyalgia.  What started out as a routine doctor’s visit for flu-like symptoms that went on for way too long, became a couple of weeks of multiple blood tests, referrals to the rheumatology department, follow ups, and now a diagnosis.

Yep, buckle in for one of those therapeutic posts that I so desperately need so I can get it all out.

Not knowing what Fibromyalgia is, the doctor might as well have said Cancer.  For every question she answered, I had ten more.  I’m grateful that I was assigned to an extremely patient Rheumatologist and that my husband had a day off to go with me.  I don’t think I would’ve had the strength to drive home that day.

The word fibromyalgia comes from the New Latin and Greek meanings:
fibro meaning “fibrous tissue”
myos meaning “muscle”
algos meaning “pain”

I, of course, did what I always do.  I researched it.  I read everything I could possibly get my grubby little hands on.  I wanted answers.  I wanted explanations why this happened to me.  I wanted a cure.  I want it to go away.

What I’ve learned about Fibromyalgia since that day:

-nobody really knows what causes it
-it’s incurable
-women are 10 times more likely to develop it than men
-there is medication to treat specific symptoms, but not the disease itself
-stress triggers flare ups
-my history of medical problems all lead back to Fibromyalgia
-it wasn’t all in my head

…and so much more, these are just the ones that stand out.

One symptom isn’t Fibromyalgia, it’s a combination

Since last Thursday, I’ve had several panic attacks, breakdowns, bouts of anger, moments of clarity and of course, moments of determination.

What now? 

As is my nature, I allow myself 2 minutes a day to be overwhelmed, cry and get it all out, before I suck it up and put on my big girl panties.  Those that know me, know that I’m not a crier.  I don’t like crying.  I don’t like chick flicks.  I don’t get emotional over babies.  The way I see it is that I’ve had a lifetime of crying in my last marriage, that I’ve made a conscience effort to not let things into my life that make me sad. 

Now that I know what I have, my health history is making a ton of sense.

Pelvic Problems

For as long as I can remember I’ve had girl problems.  Heavy periods, occasionally painful sex, several miscarriages, two extremely difficult pregnancies, bleeding fibroids and ultimately a hysterectomy.  I haven’t had any issues in this area since the hysterectomy, until about a few months ago, I found out I have ovarian cysts again.

Digestion Problems

Self-explanatory.  I’ve never been huge on food.  I eat to live, not live to eat.  Now I know it’s because everything I put into my mouth, makes me feel sick.

Weak joints

I can’t count the amount of times I sprained an ankle, kinked my neck, or had joint pain.  What I do know, is that massage therapists need a frequent flyer discount card.

Fibro Fog

I don’t think I’ve had full fibro fog, as described by the doctor, but I have always had memory problems.  Simple things.  I think it’s the reason I refused to study the night before a test because nothing stayed in my brain.  5 minutes before a test was the only thing I ever need to ace a test.

Sleep Disturbance

I’m one of those that if you wake me, that’s it, I’m up.  No going back to bed, no matter how tired I am.  I never thought anything of it.  However, between that, restless legs, morning aches and tingling limbs, I now know it isn’t a normal thing.

Anxiety/Depression

This is a fairly new thing for me.  I’ve always been a planner, but I attributed that to OCD.  Little did I know, it was a coping mechanism to prevent anxiety.  I never considered myself an anxious or depressed person, I still don’t.  However, the doctors did 7 years ago.  I have to say, I was extremely ashamed.  I was put on meds that were horrible and turned me into a zombie.  I hated them and refused to take them, they made me feel worse. 

Also, I was going through an extremely tough time in my life, my marriage of 15 years was over and as we all know, divorces aren’t an easy thing to go through.  I’ve since, made it out on of the other side of that and other than an occasional co-parenting issue, I’m good.  If I would’ve known then about my Fibromyalgia…well, let’s not finish such sentences.

Pain & Fatigue

I’m putting these two together, because for me, they go hand in hand.  I’ve never not had either one in my life.  I honestly can’t say when the last time it was that I was NOT in pain.  Pain has been a constant for me.

Most of the time time it takes a history of symptoms for a diagnosis, which is why it usually isn’t diagnosed until mid-life

Why have I put all these out?  Why this post?

Mostly for me.  It helps to see how it’s been there all along.  It’s been an invisible constant.  It wasn’t all in my head.  I feel slightly vindicated for all those times I just couldn’t move, for all those sick days I took, for all those missed dates, events and parties.  I’m grateful I listened to my body enough to know that it needed rest. 

But I also put this out because people just don’t know how invisible this is.  I don’t have any physical deformities and I never will.  I look healthy, but I never have been.  I have smiled through the pain because I don’t have the strength to do anything else about it. Lastly, I put this out there because I hope that when I look back at this day, I’ll be able to see how far I’ve gone.  What has worked for me, what hasn’t and I hope it helps others along the way.

What now? 

Considering there is NO treatment and it will never go away, I figure I have two choices, lay down and die or get up and work through it.  I’m here, so you all know what I chose.

Currently I’m a human pin cushion.  I’ve chosen acupuncture for pain management, which is huge for me, because needles make me faint.   I don’t want drugs, because it’s a lifetime commitment at this point and nothing will cure this for me.  So I’m addressing the symptoms and that’s about as much as I can do, other than to have a voice.  I’m looking into CBD oil as an option for pain management, but only as a last resort.

What do I know for sure?

My life is going to change drastically.  It has to if I want any kind of relief.  I have a wonderful life, a great husband and two incredibly amazing daughters to live for.  Nothing has changed with this diagnosis, but it’s going to. I’ll keep learning along the way.  Do what works for me.   I’m still me.  I live with pain.  It won’t defeat me, it hasn’t yet and I’m determined to keep it that way.  I have Fibromyalgia, it doesn’t have me.

-Sandra

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