My Fibro Awareness Challenge to You..

Thank you so much to everyone who watched and “liked” my video for the fibromyalgia awareness day 2012 contest.  I have been totally humbled by how many people have watched the video, and how many wonderful comments I have received.  Even if I don’t win the contest, I am so happy I made the video.

I have made a lot of new contacts through the contest through facebook, email, and my blog.  I have been able to see how much people are promoting fibro awareness.  Last year I didn’t get to see all the comments and purple splashed everywhere…it’s great!

After the past few weeks, however, I have my own fibro awareness challenge for this year’s fibro awareness day.  We fibro fighters seem to be doing a great job at letting the general public (friends, family, co-workers, etc.) know what fibro entails and we also seem to be supporting each other through chat groups and support groups.  But…are we pushing awareness to our healthcare providers. 

About a week ago I started to not be able to catch a full breath.  I’ve had the continuous need to yawn and it’s taking multiple tries to catch a good, full breath.   I got on some support groups for fibromyalgia and found out this is a very common problem.  Patient after patient told stories of having the same issue…and also having the same problem…their doctors weren’t sure WHY they were having this issue.  It was suggested to me to try increasing my iron, as this is a common problem with anemia.  Iron increased (along with constipation from the iron), but after three days of Iron supplements, I was still not breathing.  I called my Rheumy and he stated he didn’t think this was a common problem with fibro patients.  The support groups beg to differ.  Is this really not common, or are the patients not making their doctors aware of this problem? 

I taught my weekly Zumba class and it felt horrible.  I was dizzy, winded and really frustrated.  For anyone that loves Zumba, I’m sure they would have the same reaction I did…”Oh my God, what if I have a serious problem and won’t be able to Zumba anymore!”  Zumba is my therapy…both physical and mental….I couldn’t stand the thought of not doing it anymore!  I decided to take off the rest of the semester (I teach at a University) from teaching to figure this thing out.  I attended a Zumba class Thursday night and it actually felt pretty good.  I could not figure out why I could survive a class like this (the instructors are very high energy), but when I sat at my desk at work I was yawning and having shallow breathing.

Friday I went to my doctor and he treated me for a possible respiratory infection and possible pleurisy.  Two days later, the antibiotics weren’t making a different and I got really dizzy trying to get our grocery shopping done.  So Sunday evening I called my doctor’s after hours line and he stated I needed a chest X-ray, so off to the E.R. we went. 

After blood work, an EKG, Chest X-ray and monitoring my Oxygen, my heart and lungs checked out perfectly healthy.  My mental state, however, not so much.  My body is apparently in a high anxiety state and it’s causing me to hyperventilate consistently. 

This doctor I had in the E.R was definitely not aware of fibro.  Actually he’s an ass and the doctor I had when I miscarried my baby.  He handled that situation AND this situation very poorly to put it nicely.  To put it not so nicely, the man needs punched in the teeth. 

He had multiple suggestions to lower my stress. 

1.  Drugs.  “I have to find an anti-depressant that works for me.”  I have had no luck with anti-depressants.  I have had my experiences with them and they have all been negative.  Doctors don‘t seem to understand, but THERE ARE people who cannot take these.  For me, I get the opposite intended effect of the drug.  I get REALLY overly happy for a few weeks and then get so down it get scary.  Dangerously sad.  I have tried probably 7 or 8 types of antidepressants and have had the same problem with all of them.  I can’t take them and don’t intend to take them in the future.  Only I know my body, and my body is saying no.

2. Quit my job.  SURE…let me jump right on that one.  Screw my bills and responsibility, I don’t need a job.  Puuullleeaasee…unless he’s planning on picking up my bills I’m not quitting, plus I don’t think my job is the cause of my stress.  My husband and I recently had a rough few months due to him losing his job.  He’s since found a better one (yay!), but the past three months have been rough.  I think losing a job is tough on everybody, but for someone with fibro, I think it’s even more of a challenge.  I know Doctor’s know anxiety is a symptom of fibromyalgia, but are they aware of why, or how different anxiety may feel for a fibro patient? 

3.  Walk two miles every day.  Um…ok.  I filled the doctor in on how active I am already and he said what I’m already doing doesn’t matter.  This is where I couldn’t get him to understand the fibro.  I am already pushing my activity level, do I really need more?  Plus, as funny as it sounds, I can easily handle an hour of two of Zumba, but my hips and lower back have a hard time handling continuous walking.  It’s a different muscle movement, and Zumba can always be modified if my hips are sore.  He didn’t get this and swore the answer to all of my stress was EXACTLY two miles of walking a day.  Again…Ass.

After getting really pissed at this man, I realized it wasn’t worth it.  I went to the E.R. with a purpose…to make sure my lungs and heart were not the cause of my breathing issues and that’s what I got.  I have to brush this doctor off for being very uniformed.

I really wonder, however, if doctors are really aware of how fibro patients handle stress and anxiety.  Yes, there is a bit of depression involved, but I’m sure there are a lot of people out there like me who don’t consider themselves “depressed” but just physically unable to handle some stresses.  I think my body got tired from keeping itself going during me and my husband’s rough patch and it just now caught up with me.  A Fibro patient’s body is already fatigued, so to me anyway, the fact that we handle anxiety differently makes perfect sense.  We’re tired, we hurt, we don’t sleep…we’re not crazy…our bodies just work differently. 

I have taken the day off work to hopefully start catching my breath and I’m going to start looking into meditation or breathing exercises.  While I wasn’t up for it this morning (not until my dizziness subsides) I know Pilates will be a big help to regulate my breathing.  I’m also glad I know I’m healthy and able to get my Zumba therapy…that is a huge relief.  I know, in time, this too shall pass.  I’m re-learning how my body and mind work since getting fibro, and this, like every other side effect coming my way, I seem to have to learn the hard way. 

But I still wonder how much our doctors really know about the side effects and symptoms we share with each other, but may not be sharing with them.  As annoyed as they may get, my fibro awareness challenge is to let your doctors know of a side effect you’re having beyond pain.  Do they know how bad anxiety can get?  My rheumy wasn’t aware of this problem, but if a new patient comes to him with the same issue, he is now aware I had the same problem.  Will this lead to helping the next person?  It’s worth a shot in my mind.  Are the topics we share in our support groups getting shared with our doctors?  I hope they are.  I think we can get so bogged down with making sure our doctors are properly treating our “pain” that we can forget (or fog away) the other annoyances fibro can bring…like anxiety, skin problems, allergies, etc.  Fibro is WAY more than just pain and should be treated that way, but they can’t treat it if they don’t know.

My Fibromyalgia awareness challenge for you…tell your doctor a symptom you’re having that he may not even know about.  Who knows how this will change their understanding of this condition for us and future fibro patients.