Rain, Rain Go Away…

Yesterday our weather went from pouring down snow, to rain, to 50 degrees all in the matter of about five hours. My fibro completely rejected the change in weather and gave me one of the worst flares I’ve had in awhile.

As the weather rolled in Tuesday I started to feel more and more pain. As the night went on, my mood switched as well. I’m not sure if this is common during flares or if it’s just a trait of my fibromyalgia. Anyone out there with fibro have major mood switches during a flare?

Tuesday night was the night my mood switched. Everything (in my mind anyway) was wrong. I was exhausted, in pain (from jaw to ankles), wanted to give up on my weight loss and get fat, wanted to give up on physical therapy, Pilates and zumba, I was convinced I was going to get fired, Blah, Blah, Blah…All those stupid thoughts that go through your head when you’re not thinking straight. My poor husband helped me get to sleep by staying up with me and letting me vent for a little while, but sleep didn’t come until really late.  Lack of sleep surely wasn’t going to help anything.

Yesterday at work when the snow started I shut my office door, and cried through the storm. I think I felt every snow flake that fell. Then it rained and I think I felt every drop. A few hours later the sun came out and I was completely exhausted. I had to really talk myself out of canceling Pilates, even as much as I wanted to. I knew if I went home and sat I would feel so much worse!

Pilates helped soooo much, not only for my pain, but it cleared my head a little too. I think my instructor/Physical Therapist could see how much pain I was in and was also able to squeeze me in for a Physical Therapy treatment. She said my face was swollen, and even their front desk worker asked what was wrong with my eyes. My flare was written all over my face. I owe my P.T. a million hugs for squeezing me in to help with the flare. I feel almost human again today!

 I started thinking about some parts of my past because of this flare. It makes me wonder how much research is being done about the connection of depression and fibromyalgia. I’ve tried to look a little online and so far all I can really find is they have proven there is a correlation between people having a history of depression all their lives and having fibromyalgia. Ok, that’s good to know, but I want to know WHY they have that correlation.

I went through major depression, especially in college. It got as bad as depression gets. I went to counselors and talked, but I never really felt like it helped. I could never really pin point why I felt like I felt, I just knew that sometimes I felt really bad.

When I look back on it though, the way I feel during my flares is not much different than the way I felt then. So, was I really “depressed” or was I having fibro flares without knowing it?

If I had known then that it could be fibro, I think I could have dealt with the rough times a lot better than I did. It would have been easier to have a possible answer why I felt so bad (but only sometimes).

So, when they find the correlation of depression do they automatically write off the “history” of depression to adolescence or something that happened in childhood…or is there a pattern to it?

I can remember my two worst moments of depression both happened in the rain. I just wonder…

Lights! Cameras! Zumbathon!

Yesterday was Zumbathon!  It was three hours of Zumba and a lot of fun!  Of course, no day would be complete without a major fibromyalgia moment!

Ultimate Fitness has their zumba addicts to come together to perform songs throughout zumbathon day.  We get together with an instructor, come up with choreography and perform throughout the three hours.  It was fun to come together with zumba friends and prepare for Zumbathon day.  Our little group has bonded and I am so glad I got to work with them. 

Our group decided to have one last practice yesterday morning and it’s a good thing we did!  Not because we weren’t ready, but because I wasn’t ready for what being on stage would do to my fibro.  Ultimate fitness goes all out with lights and fog machines.  The lights flash on and off, spin and make multi-colored dots dance around the stage.  They are awesome!  Don’t get me wrong, but when we walked on the stage and the dots started spinning on the floor under me, my fibro dizziness kicked in like crazy! It was like being sea sick.  It literally felt like the stage was moving under me and I couldn’t get my balance.   It’s amazing how much fibro messes with your equilibrium!  I had a serious moment of panic that I may look like the “drunk” member of the group!

One of our group members who stood behind me was watching me for the choreography.  She told me multiple times not to get dizzy and fall down because she was watching me and would probably just fall along with me!

 All I could do was laugh and no matter what I did, I had to remember to NOT LOOK DOWN!

It turned out by the time it was our turn to do our song my nerves took over any dizzy feeling.  I remembered not to look down, but when I looked straight ahead there was a video camera right in front of me.  WHOLE new reason to be nervous…”Oh no, there’s a camera!  Don’t make a stupid face!  Suck in the belly! Try to look like you know what you’re doing!” 

 

 

Needless to say, I made it through the whole song without the stage going out from under me!  Our group did great and won best choreography out of all the groups!

Lights, cameras, and all, I’m excited to challenge my dizziness and do it again next year!

Celebration Blog…

The last few weeks have brought about an excuse to brag and celebrate some of my accomplishments!

First celebration:  I did a pretty darn good pike series in Pilates last night!  The weight on the chair was even changed to make it a little harder and I managed to do a good set.  I think I even surprised my instructor.  You’re going down evil Pilates chair!!  And best off…no wedgies were obtained during the whole exercise!

                                         The evil Pike (it’s harder than it looks)

Second celebration:  I met my 100 pound weight loss goal a week early (and even surpassed it by a pound).  It’s been a long road.  When I weighed in Friday, I think I went into shock for a minute.  All the reasons I started losing weight came rushing back at me.  Beyond the problems my weight could have caused my fibro I was also borderline diabetic, started to miss periods due to being overweight, I got winded going up stairs and started having breathing trouble during sleep.  Most heart breaking of all, when my husband and I started to look into adoption I found out my BMI was too high to meet the application criteria.  My husband was looking at the pictures we had (very few because I ran from the camera) of me before my weight loss.  He got very upset, very quiet and just kept saying he was sorry.  He said he should have stopped me.  But the truth is, if he had said anything back then it probably just would have made it worse.  I wasn’t ready to hear it.  I saw the weight on the scale, but had a million excuses for it (even though I just ate a 10 piece chicken nugget, large fries, large coke and a double cheeseburger to top it all off-yes I really ate that in one sitting).  He’s been supporting the decisions I have made when I finally stopped making excuses and it’s been support I needed to get to my goals. 

I know I now need to maintain, but I am blessed with the greatest support system with my family, friends and my second family at Ultimate Fitness.  Sometimes I wonder if I wouldn’t have lost as much as I have if I hadn’t been diagnosed with fibromyalgia.  When I was first diagnosed I wasn’t sure what the future held.  I wasn’t sure if fibro meant day after day of laying in bed in pain.  Realizing it was up to me to get out of that bed was motivation for me, a reason to keep trying and keep moving…not only to be healthy (and let’s face it-look a little hotter), but to show myself that the fibro’s not going to get me!

Martha My Dear…

“Things turn out best for the people who make the best of the way things turn out.” ~Art Linkletter

 

My mom sent me this quote this week.  She said I was an inspiration to her for the way I’m handling my fibromyalgia.  Inspiration is a very tough compliment to take, even from a very loving mother!  Especially because there have been times, recently where I felt like my fibromyalgia was a reason I let her down. 

In my experience, Fibromyalgia changes you in many different ways beyond the physical side effects.  Because of fatigue and fibro fog, you start to adapt to a new way of thinking.   Things are harder, like following directions, doing the same job you did every day for years, or handling new emotions that are brought on by pain or a foggy head. 

This past November my mom was diagnosed with breast cancer.  This was the first major blow I had to handle since being diagnosed with Fibro.  When she told us on the afternoon we came to visit, the news didn’t really sink in.  Later that night, as I was going to bed, I started to really hurt.  My body was already hurting from the stress of hearing the news, but my foggy brain couldn’t catch up.  When my head finally grasped the news and caught up to my body, I was in a full blown flare.  I wanted to be there for my mom and my pain was totally distracting me. 

For the next few months of her planning surgeries and doctor visits, I flared off and on.  Her mastectomy was planned and they decided she wouldn’t need any radiation or chemo!  It was great news and the cancer free plan was on its way!  And then I realized there was another fibromyalgia hurdle to jump over.  We had traveled for Thanksgiving, and again for Christmas.  I had also just traveled for work.  Long car rides are one thing I can’t do well.  Even as much as I workout, a car ride angers my fibro more than any other activity I do.  Not only does my whole body hurt, but I get so worn out that I get weepy, grumpy and my fog gets so bad my conversation doesn’t usually make sense.  It takes me a good day, day in a half, to recover from long trips.  So…I had to seriously question whether my body could handle another four hour car ride to be there for her surgery. 

I hated that I even had to question this.  My mom was dealing with breast cancer and I wasn’t even sure if my body could handle a car ride.  It seemed like such a stupid problem compared to what my mom was going through.  Any normal person would hop in the car, be with the family and be there for their mother when she came out of the operating room.  But, as much as I hated to admit it, I was too weak to make the trip.  I never felt more selfish in my life.  That’s the thing about fibro.  You can’t see it.  If I had pain from something you could physically see, to prove to myself I couldn’t make that car trip, then I probably would have been more understanding with myself.  Not being able to “see” fibro is just as confusing for people who do have it then for people who don’t.

 I caught a lot of negative remarks from people not understanding why I couldn’t just “push” through the fibro and go.  The domino effect of fibro symptoms could have started.  I could have already been tired, gone on the car trip, body could have started to flare, head got so foggy I couldn’t hold a conversation with my family, I couldn’t sleep and that made everything worse, I get sick from not sleeping, etc, etc, etc.  After a tearful conversation with my mom, we both decided I should visit after the surgery to help recovery.  I would have been no good to her or my family sore, tired, sick and grumpy.

My mom came through her surgery great!  She has a few more reconstruction surgeries to go, but we can gladly say that she is cancer free, looking and doing great!  I know she has never held it against me that I couldn’t be there as much as I wanted to.  I know our phone calls were just as important as a visit might be.  I know she still struggles with the recovery and healing process, but she is doing so great! 

She is one of the reasons I’m so proactive about working out, getting therapy when I need it, and trying to make myself as healthy as possible.  I know there will still be times when it happens, but if I can keep my fibro from letting me (or anyone else) down again, I will. 

She has been an inspiration to me!

What’s up Doc?

When I was first diagnosed with fibromyalgia I did what a lot of people probably do.  I went online, looked at various online support groups and websites, and signed up for email newsletters where they update me with any fibromyalgia news.

I have received some really helpful emails, like diet suggestions, new research studies that are being done, or new theories on causes and treatment.  But along with the good emails come the bad.  I’ve been sent an email that stated alcohol was a good way to manage the pain and help sleeplessness.  I have received emails that say that fibromyalgia patients, under NO circumstances can do aerobic exercises.  *sheesh*

Today, however, I received one that really made me think.  It’s basically a step by step guide on how to “effectively” diagnose, and treat yourself for fibromyalgia.  Their argument is, once the doctors diagnose you with fibromyalgia, they basically show you the door, say good luck, and send you on your way.  It implies once the diagnosis is made, your treatment WILL end.

Believe it or not, I can actually relate to some of the ideas behind their message… although NO one should try to diagnose themselves for fibro!  There are many other conditions that have similar symptoms, and they should be ruled out by a doctor.

I think the person who wrote this may have had a similar experience to what I had with my first Rheumatologist.  When my family doctor finished running every test known to man and thought it might be fibro that I was experiencing, his next step was to send me to a rheumatologist for an official diagnosis.  As anyone with Fibromyalgia probably knows, rheumatologists usually come with a lllooonngg waiting list, especially for new patients.  When I heard it might be six months to a year to see a Doctor in town, I searched my options and decided to go to Indy, thinking a bigger city would have the best doctors.  Boy was I wrong!  I should have gone on the list, sucked it up, and waited for the local doctor, but when you’re first diagnosed, you don’t know what to do or how fibro will affect you, so I didn’t think I could wait.  (Looking back on it, my waiting period I eventually had to see my doc was kind of a good thing. It made me deal with a lot of the aspects of fibro on my own and gave me time to see how fibro was really affecting me so I knew what side effects I wanted to doctor to pay attention to).

The first visit was ok (but it should have been a sign to me then that I was the only patient in the office).  Pretty basic evaluation of my tender points, how my health and been, etc.  It was decided that I did, in fact, have fibromyalgia.  I was given the usual pamphlets on what to expect, and it was suggested that I start taking the evil pill (yes, the one with the name I can’t say out loud).  Back in three months…

Time passed, my personality and mood was rocked from the drugs and I had to initiate physical therapy and pilates on my own (the doctor never mentioned it as an option, I only knew it was because of ultimate fitness).  I wanted off the medicine.  I knew it was not good for me for lots of reasons, but I also knew at that point that I was 100% addicted to it.  I went back to see my Doctor and told him my concerns that the drug was making my head too cloudy, and with my activity level, I thought it might be too strong for me.  His answer, to give me another drug that may or may not have the exact same side effects of the one I was one.  He never acknowledged my physical therapy, or asked how that or my Pilates was helping my pain.  He told me (almost word for word) that no matter what activities I did, I would have to rely on drugs and continue to increase my dose level in order to manage my fibro.

That week I went back on the waiting list for the local Doctor.

My Doctor has been great!  I could kick myself a million times over for not going on his waiting list in the first place.  He came highly recommended by my physical therapist, and he is also a fellow Zumba addict (can’t go wrong there).  His office has tried a few new drugs, but in the long run, has been supportive with my decision to treat it with as few drugs as possible (right now I only take a muscle relaxer every night to help me sleep).  This doctor promotes activity and moving as part of fibro management and since he is familiar with my “guardian angel,” he knows how hard I’m pushed in my workouts.  That’s important to me.  I may have fibro, but I don’t want to be treated like I’ll break.

I think the people who sent this message have not looked for the right doctor, and since this message is going out to other people with fibro, it worries me that others may think there aren’t good doctors out there.  Yes, I agree that being proactive in finding your own way to manage the symptoms of fibro is important, but I also think it’s important to have the guidance of a doctor who will come up with a plan that incorporates your ideas. 

Don’t stop looking! The good ones are out there and they’re worth the wait!

Just for Fun…

 

DID YOU KNOW?

• The total annual costs for fibromyalgia claimants were more than twice as high as the costs for the typical insurance beneficiary. (www.FMaware.org)

• Sinead O-Conner suffers from Fibromyalgia (Do you think that she was in a fibro fog when she ripped up the picture of the pope on Saturday Night Live?)

• There is a theory that Job suffered from Fibromyalgia?

            “I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.” (Job 7:3-4; 30:16-17)

• People believe Florence Nightingale had fibromyalgia. She is quoted as saying, “There is no part of my life, upon which I can look back without pain.”

• It’s rumored that a group of people with Fibromyalgia suggested to Oprah that she should have a show about Fibro to get some knowledge out there. It’s said that she would not do it unless celebrities with fibro came on to talk about it. (Hmmm…not too upset her show is going off the air).

• Fibro has been around in medical research since the 1800’s, but it wasn’t until 1981 (the year I was born!) that they had a clinical study on tender points for diagnosis. Fibro was thought to be a psychological condition and was treated as such. (www.fmaware.org)

• Different things can trigger fibro symptoms (at least in my experience):

  • Weather
  • Stress o Loud noises 
  •  Strong smells 
  •  Food

 

• There are many other symptoms to Fibromyalgia other than pain… Additional symptoms may include (From the National Fibromyalgia Association):

  •  Irritable bowel and bladder (I’m no fun on car trips, and it’s best not to get ticked off if there is not bathroom nearby)
  •  Headaches and migraines ( Have had them forever, wondering if they weren’t my earliest sign of the fibro coming)
  • Restless legs syndrome (I don’t suffer from this one, but I do get a lot of random twitches everywhere else)
  •  Impaired memory and concentration (There are times when I do concentrate enough to get a lot done, but then I forget if I did those things! I should buy stock in post-it notes!)
  •  Skin sensitivities and rashes (And they get worse during flares! There is a theory out there that Fibro hits after a traumatic event. I started getting rashes during a really awful part of my life, which I think was one of my other early signs.)
  • Dry eyes and mouth (I am the queen of contacts popping out from my eyes being dry. The dry mouth is terrible in the morning.)
  • Anxiety, depression (I would like to add feeling paranoid into this category. I think it would be completely un-natural not to have these side effects when dealing with Fibro!)
  • Ringing in the ears (not a big problem for me, but I do get a lot of ear pain.) o Dizziness (I can’t do the spins in Zumba some nights because of this. It’s awful. One spin and I feel like I’m going to get sick for about five minutes.)
  • Vision problems (I’m sure my vision has gotten much worse since my fibro took over, It’s like my eyes can’t concentrate on objects). 
  •  Raynaud’s Syndrome (this is when your fingers or toes turn white or blue with cold or stress. My fingers only turn slightly white, although I can’t hold a cold can or jar without wanting to throw it from pain! My toes definitely get oddly colored when they’re cold. I haven’t officially been diagnosed with this, but I have my suspicions).
  • Impaired coordination (This is always tested during pilates! Sometimes I just decide to go ahead and fall in my own house, and I’m also really good at running into every door frame or door knob I come across. I’m always getting bruises on my legs and arms where I have no idea where they came from)

Diet, more water, and close calls…

I’ve been pretty much gluten free/high protein/low carb/high water intake for almost two weeks now. My first weigh in last Friday after one week of the new diet was a 5 pound loss! Second weigh in comes tomorrow…EEEP!

I’m not going to say that I will eat like this forever, or that it’s the best diet for everyone, but I’m starting some really good habits that I’m hoping to keep up with.

Just in the two weeks I’ve noticed some changes with my fibro. I seem to be doing a lot better with the “side effects” of Fibromyalgia. I’ve had major relief from my IBS. Excluding the incident where I found out I can’t handle eggs, my stomach has been very calm. My energy level has also been much higher. My caffeine intake has been cut way down, but I don’t feel as fatigued as I did before.

The pain is still the pain (for now anyway). I had physical therapy last night, and things are getting a little easier each session. If the diet is going to affect the pain, I think it’s going to take awhile longer, but I’m willing to wait and see! Relieving the side effects is motivation enough for me!

The water is getting easier, although I think my workout buddy and I still have our moments. I did the “pee-pee dance” in front of one of my co-workers who talked a little bit longer than my bladder could handle. She let me go mid-conversation, laughing at my dance as I ran to the bathroom.

My workout buddy has also mastered the art of the “spin” in the bathroom when there is more than one button to un-do, or you’ve waited too long and you’re running out of time. I haven’t tried this system yet. With my luck, I’d probably spin too many times, get dizzy and miss when I try to sit down. I’ll stick to my “pee-pee dance.”

One of the more frustrating (but still humorous) things this week seems to be the vitamins. We are taking B-complex, a multi-vitamin, potassium, and calcium. For some reason, the calcium pill is REALLY hard to swallow. It’s big, but not that much bigger than the multi-vitamin. It just seems to stick a little too well. I spit one back out all over our kitchen counter. I skipped it that night.

My workout buddy also had an incident on her way to work with the calcium pill. Her pill also decided to stick…while she was driving on a highway. She said she’s sure the other drivers on the road thought she was crazy as she bobbed her head back and forth like a chicken and stopping every few seconds to take a big swig from a water bottle.   I’m just glad she made it to work accident free.  That would be a hard one to explain!

At least I can say this diet isn’t boring!!