Fibromyalgia Sucks!

Most of my posts are about our family, but I wanted to share a private struggle that I have been dealing with for several years in hopes it will be cathartic for me and maybe help someone else along the way.  About seven years ago, I went to see an internal medicine specialist because I had been getting really run down.  I was experiencing fatigue to a point I felt like I had the flu and this was happening pretty consistently.  After a battery of tests to rule out Lupus, RA, MS etc. and piecing the puzzle together I was presented this mystery diagnosis called Fibromyalgia.  Fibromyalgia is considered in the arthritis family as well as categorized as an autoimmune disease.  Basically, (like the Lyrica commercial states that you may have seen) you experience widespread pain due to overactive nerves in your muscle fibers.  The best way I describe it is the feeling you get when your body aches when you are sick OR after you have rigorously worked out and are really sore the next day.  Needless to say it doesn’t feel good and bottom line…it sucks. Anything from headaches, body aches, specific areas hurt like your hands and fingers, back, neck. Basically, I am a 33-year-old trapped in a 70 year olds body is what it feels like.

I have been under the care of a rheumatologist for a few years and Fibromyalgia is something that can be controlled through lifestyle and medication, if needed.   When I was first diagnosed, I actually had a doctor referred to me that would not take Fibromyalgia patients.  He felt it was a “all in your head” condition.  That phone call ended in instant tears.  I have a great lady now who I trust. I have several women in my family who have arthritis-type conditions such as RA that experience a lot worse me, but without controlling this odd disease I could head that direction.  Here is what is funny about controlling your lifestyle with Fibromyalgia.  When I was diagnosed, my doctor and I pieced together that I was in a very stressful job and something had to change in order for my health to get better.  At that time, I was an event planner for a major non-profit.  The hours were long, stress was high, and not a lot of time off to recover.  We were a small organization (staff wise) with a lot of responsibility.  I was a one-woman show without an assistant or intern.  I was 26 at the time, so you wouldn’t think I would be someone at that age with an arthritis-like condition.  The stress got worse when I left that job to join a PR firm that was even higher stress.  I would continue to battle through these everyday pains and stress with the attempt to exercise which they say helps.  But, that is a catch 22 as well.  Overdoing exercise can make the condition worse so you have to find the right exercise.  I did low impact and yoga for a while and that seemed to help when I didn’t have “flare ups.” Try pushing a stroller with three 20-pounders in it up a hill.  May not be exactly the right exercise.

While working at the PR firm, I knew I had to change my lifestyle or my health would continue to decline.  There were days where I would cry and tell my parents and then Bryan how I hurt all over and couldn’t get out of bed.  No over the counter pain meds would help, warm baths or any of the prescription meds I tried except a low dose of a pain medication.  I had tried many of the new medications on the market for Fibromyalgia and I felt nuts on them.  Restorative sleep is something that is very important for me as well.  If you are reading this far and are not completely bored like you are reading Web MD, you know how my lifestyle has change over the past almost two years.  That is where I am going with this….

When I was pregnant, one of my biggest fears aside from the fact we were expecting triplets was how I would handle a high-risk pregnancy and fibro (for short).  Surprisingly, my doctor told me that many of his patients actually felt better during pregnancy.  Aside from the difficulties of my pregnancy I did feel  pretty good!  So, my next fear was it coming out of remission when my body reacted to no sleep, the drain from taking care of three infants/toddlers, lifting, carrying and constant grind of motherhood.  I thought my days of an “outside the home” career were taxing, I was wrong.  I used to have some 12-13 hour days back then, but they were not everyday.

Lately, I have been struggling.  I have had to take a new route with my rheumatologist due to my symptoms being in full swing.  This is one of those times where I keep telling myself that God does not give us more than we can handle.  HE gets me through my day and thank GOD that the girls are now sleeping amazing.  Hope I don’t jinks that.  I praise Him for my family for providing help.  There are days where Bryan will walk in the door and I will say, “I have sat down for 30 minutes.”  Those are key words for “I am about to crash.” A lot of moms feel that I am sure.  Hopefully, minus the ice packs, heating pads, Bengay cream, pain meds and Fibro meds 🙂

It’s about 5 a.m. right now.  The pain has kept me awake again and I thought I would vent so I can start my day with my girls fresh and with it off my mind.  If you know anyone who suffers from  this I would love to chat.  It is really an emotional and physical struggle when you feel so bad.  I am hopeful it will get better in time.  Aside from getting pregnant again, which is NOT happening, I will pray that the things I do to feel better will benefit me and especially my girls.  All babies need a healthy mommy first and foremost! Fortunately, it helps to keep your body moving most days and that is clearly not a problem with my active little monkeys!

Oh and P.S. – This is not something for those close to me to worry about. Overall, I am doing just fine. Just wanted to shed some light on something I don’t talk about much.

Fibro suffer-ers unite and let’s chat about how much this sucks! Hahaha.

 

 

7 thoughts on “Fibromyalgia Sucks!

  1. Steph! Bless your heart. My brother in law has RA, as well as another friend of mine. I hear horror stories constantly about the every day battles he faces dealing with it. Everything from being in constant pain to having day long episodes where he is sick and in bed, unable to function. And like you said, the medicine they have for it is seemingly useless. Hate that you have to deal with this on top of having the hardest job in the world. You truly are a superstar for handling it all with such grace!

  2. Stephanie, I have chronic costochondritis that puts me in similar straights, but limited largely to my chest, collar bone and shoulders. Same general issues with exercise and meds though. I just wanted to write and say that I get it. You are not alone and you can do it! I know it is so incredibly hard, but lucky for us we have good support networks, families, friends, doctors, and kids. Every time I cannot pick up my daughter because of my chest nonsense my heart breaks, but we just keep trying and doing our best. Hugs, prayers, and happy thoughts to you and yours.

  3. I, too, have Fibromyalgia and I can relate to everything but the triplets. I am a mother of an 8 yr old boy and a 2 yr old girl plus I am married and work full-time. I am 31 yrs old and have been battling fibro for about two and a half years or so. I was misdiagnosed with RA first.

  4. My wife suffers from fibro, which means that the whole family suffers from fibro. Today, I Googled “fibromyalgia sucks” because quite frankly it’s one of those days, because you feel like there’s no other person out there that faces the same challenges, and if you can find comiseration somewhere in cyberspace, then somehow that’s comforting. Well, finding your blog overshot the mark. This blog entry reads as if my wife sat down and wrote it herself. After reading other blog entries, it is uncanny the similarities. We too got pregnant sometime following her fibro diagnosis, also a spontaneous triplet pregnancy, identical with a fraternal. Also had the single umbilical artery with baby A, and subsequently spent quite a haul in the NICU after delivering at 25 weeks. We now enjoy a pair of 4 year old survivors, who are triplets in every sense now since their 2 year old brother is just as big as they are. Anyway, finding your blog has been inspiring. Thanks.

    • Dear fibrospousefatheroffive – Thank you for your comments. I feel for your wife and your family. It is amazing you have had similar experiences as our family all around! There are always good days and bad days. As I am sure your wife does, you push through those rough days to be the best parent you can be for your children. That always make my body feel the best when I know I keep trucking on for them! Hang in there and thank you for being a supportive spouse. It is a tough diagnosis to deal with and such a mystery. I continue to pray for more answers regarding this condition in the future….Best wishes.

      • Fibro really does suck! I have been living with it and Lupus for 10 yrs now. It sucks for the whole family especially my kids! I am having a sucky day today! Just had to vent!

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