Living With Fibro

I have fibromyalgia.  I still vividly remember when I was diagnosed.  I was 19 years old.  I was in college and having a lot of pain in my hip, nothing worked to take the pain away.  Heat, cold, aspirin, stretching, exercising, sleep, nothing worked.  So I went to the clinic on campus and saw a doctor.  He listened to me and ended up testing my  pressure spots.  He then told me that, due to my reaction with the tender spots I had fibromyalgia.

I remember asking him "Okay, no problem.  When will it go away?  Do I need a  prescription?"  And I distinctly remember him telling me "There is no medication, it will never go away.  You will always have this."  

I remember sitting there, at the end of the bed happy I was in my street clothes.  I remember how vulnerable I felt; there's no meds I can take.  There's really no literature on it (this was 14 years ago now).  Many people including doctors don't even consider it a real condition (not as bad now; much worse then).  I remember sitting there thinking to myself "I'm going to hurt, forever?"  There's a particular sense of helplessness, knowing that there's absolutely nothing you can do.  There is no treatment.  There's easing of symptoms, but there's no actual treatment.

I remember being little, always having a sore back.  Even at 5 years old, my back hurt.  I remember this one time, my Mom and I were at an aunt's house.  We were sitting on the floor talking.  And I remember not being able to sit there.  I kept having to switch positions and ended up slowly scooting back so I could rest my back on the wall.  Yet my aunt and my Mom, both obviously much older than me (my mom is 70 now, so yea.  Much older than me.) had no problem sitting tailor style with no back support.

I felt like something was wrong with me.  Being so young I should have had the best body. I shouldn't have back pain if those older than me didn't!  Up 'till then I'd never had a back injury (that I was aware of at the time) so there was no reason my back should have hurt.

When I look back on it, my life that is, I've always hurt.  I've always had pain.  Joint pain, back pain, headaches, migraines once I hit puberty, it's always been there.  There are many theories to what causes fibro.  I have heard though, that it can be linked to a stress event.  In my experience, a stress event is very common.  Almost everyone I've ever met who has had fibromyalgia started having the symptoms after a stress event.  While the event itself has varied (unexpected death of a very close loved one, abusive relationship, accident, severe depressive bout, etc) there has almost always been one.  For me, I really had to think about it because I always had the symptoms; pain, anxiety, digestive problems, sleeping troubles, etc.

I eventually found out though, the possibility of 3 "stress events."  When my birth mother was still pregnant with me, in the 3rd trimester she fell down a flight of stairs and was kicked in the stomach.  Also, when I was a baby and toddling I fell and hit my head on the corner of a coffee table.  And then, when I was walking in a baby "walker" I fell down a flight of stairs while still in the walker.  So yea.  I had a few possible stress events.  Given those events it's also not surprising that I've always had such back pain.  I truly injured my back a few years ago, and I remember being glad of it because I could directly reference that, for needing back support and such, and I wouldn't have to mention the fibro then.

Fibromyalgia is an invisible illness.  It's also a chronic illness.  It's also so not known that Google and Blogger keeps telling me it's not a real word.  I'm in my early 30's, but I look like I'm maybe 25.  I'm really quite blessed with this.  So, when I'm walking slowly, or using my push cart (the little ones, not a store one) to carry groceries in, or taking an escalator instead of the stairs, or whatever and people look at me like I'm just being lazy or it's because I'm overweight or something... it's like.  I honestly don't know how to explain it.

I used to work in a retail setting and I had to stay medicated to be able to be on my feet the whole time.  Eventually my co-workers found out that the pills were pain pills (I honestly don't remember how that came out) and most of them not realizing I was over 30, they were all just scandalized I was having to take a controlled substance.  So I explained that I have this condition and none of them had heard about it, of course.  So I resorted to my totally not accurate but only way to really explain it explanation "Consider it arthritis in your muscles, but also with other symptoms."  And that helped.

I remember one time I had said something to my Mom about it and she says ".... just because you have a
little fibro..." and ... well, that really pissed me off, and made me feel awful.  When you have a chronic illness, you don't have "just a little."  You have the whole shebang.  The whole kit-and-kaboodle.  You may have a few very good days but you also have a few very bad days.  Your symptoms may be a little different from someone else's, but you have the whole. Thing.

Your age also has absolutely nothing to do with it.  That's also a rather common reaction.  "But you're so young!" or "You look so healthy!" or some other variation.  .... Really.  Thank you for judging me on my appearance.

Living with fibro is unique.  Fibromyalgia is such a random conglomeration of symptoms, ya know?  I have some of the more common ones, anxiety, mild IBS, pain all the time all over my body, sleeping problems, etc.  Because the symptoms are so different and all-over-the-place, it's really difficult to get assistance, to make accommodations, etc.  Because they're so different one needs many different types of accommodations.  As someone who needs some of those accommodations, especially when I need multiple, it makes me feel weak.  It makes me feel like I'm being a drama queen who just wants sympathy and attention.  Most of the time I will just suffer through it and not ask for help.  Though I do know that there is a particular type of strength in asking for help when I need it.

Being on the other end of that, being the one having to make accommodations, (my boyfriend has a personality disorder I frequently have to make accommodations for) it can be frustrating.  It can be tiresome, it can be frustrating and have problems of it's own as often one is giving up their own comfort for another to just function, not even be comfortable.  It can be just as difficult to be the one asked, as it is to ask, to consistently have to change things, do it this way, don't do it that way, etc.

At any rate, there it is all for you, from my perspective.  I'm really doing pretty good with this.  Not constantly being on my feet is helping, a lot.  I'm finally at a place where I can truly exercise.  We are working about 3-5 times a week now.  This is awesome.  I also have more time to soak in the hot tub which really, really helps.  That being said, there are still days when I wish I had a cane to help me walk.  Pain has become, and really always has been, such a large part of my life that if I have a moment where I feel no pain I wonder what's wrong.

In the end, I am always willing to talk about my fibromyalgia.  I'm always wiling to answer questions and talk to help who also have it to trade experiences, ideas and so forth.  I really can't talk about other chronic illnesses though.  POTS, Lupus, Epilepsy, etc I have no idea about these ones.

Please feel free to comment or send me a message if you want.  On any of my posts.