Sometimes we overdo!

The balance between pushing ourselves & overdoing is a constant battle when you have fibromyalgia. You have to constantly be thinking "Is this the activity that will push me over the edge?" But sometimes, you have to choose to do an activity that you know will land you in bed. Why? Because you want to be with your family & make memories with your kids.

This past Thursday & Friday, I made that choice. We had the opportunity to visit Washington, DC. If you've ever been to DC, you know that it entails lots of walking!

On Thursday, marked in red, we walked several blocks from Metro to Ford's Theatre & Peterson House. We toured both sites & museums. Then we hopped Metro again to Arlington National Cemetery. We walked all over the cemetery (lots of hills). Then we walked from Cemetery across Memorial Bridge to Lincoln Memorial through several monuments & to Metro on National Mall. We figure we walked a good 5-6 miles.

On Friday we walked less outside, but more inside the National Archives & Smithsonian National Museum of American History, marked in blue. I was exhausted by this point & had to sit a lot! I missed out on seeing a lot of the exhibits with my Hubby & kids.

By Friday night, I was exhausted! It took several days to get back to normal. I try really hard to push myself to walk & keep moving. But sometimes I wonder if it would be better to have a wheelchair, at least for those times I know we are doing a lot of walking, like sightseeing & conferences. Where is that line? Where do you push through & where do you admit you need a wheelchair in order to keep active?

 

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Fighting

I'm not sure why this flare-up has been so hard on me. Maybe it's because I'm getting older. Maybe it's because I've gained even more weight. Maybe it's just because I've had 3 different doctors convinced it was 3 different diagnosis & lab work proved them wrong. Maybe it's the wasted time & money. Maybe it's the overwhelming fatigue. Maybe it's all the well-meaning "advice" on how to get better. Maybe it's hormones on top of everything.

No matter the reason, it has been hard. Part of me feels guilty because I am struggling so much. So many others have it so much worse. Losing loved ones, fighting cancer, losing limbs, fighting illnesses that destroy your body, being told "there's nothing more we can do", etc...

So today I'm fighting:

• The fatigue that threatens to drive me back to bed
• The guilt for struggling so much over this
• The uncertainty of when the next severe symptom will hit
• The fear of what the next new symptom will be
• The urge to give in & not fight
• The tears that seem so close to the surface all the time
• The frustration at having to watch my kids react to my health issues
• The depression that threatens to close in
• The isolation that calls me to retreat & avoid people/places
• The anger over having to deal with this that boils to the surface & threatens to erupt

Why do I not give in? Why do I fight? Because I have hope! I know there is more to life than this. This life of pain/suffering/brokenness is not forever! It is only for a brief moment!

Over 2,000 years ago, a little baby was born in a stable in Bethlehem. But He wasn't just a baby, He was God! He became man so that He could experience every trial, anxiety, fear & suffering that we face. He became man so that He could take MY sins on Himself and suffer and die for me as a sacrifice! As MY sacrifice! Then He rose from the dead! He defeated death!! Because He defeated death, I have life! I need not fear death! Because He is my Savior & Lord, I have eternal life! Once this life is over, I get to spend eternity praising & worshiping my God & Savior! Not only that, but in eternity there will be no more fighting! No more pain! No more anxiety! No more fear! No more anger! No more frustration! I will be whole!

Until then, I will fight the good fight!

12 Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses. (I Timothy 4:12)

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Just fibromyalgia & carpal tunnel

I had my appointment with the neurologist yesterday. My tests came back good except for my right hand. It showed extreme carpal tunnel with weakness in my thumb. It's bad enough that I see the hand surgeon on Monday. I'm praying no surgery for now, but we will see.

For now, my neurologist feels all my other symptoms are related to my fibromyalgia. So, now I have to learn to deal with all these symptoms. I have a script to get a walker for my really bad days. I'm also getting a handicap placard for those days my fatigue is really bad.

Im struggling a lot. My symptoms are scary & annoying. But it's just more of the same thing I've had all my life. There's no cure. There's no real treatment. Different things work for different people. Lately I'm overwhelmed by everything. Do I go traditional meds? Acupuncture? Chiropractic? Herbal? All natural foods? Gluten free? Low fat, high fiber? Low carb? High protein? High fat? Lots of exercise? Little to no exercise? Stretching? Physical therapy? Massage? Do I push hard? Or do I rest? On top of all this, how do I take care of my family? How do I cook & clean? What if I continue getting worse? What if the weakness continues? What if the tremors get worse?

How do I balance working toward getting better with preparing for the worst? How do I research treatments without getting overwhelmed by it all? How do I explain to the kids the unpredictability of fibromyalgia? How do I explain that I might get better but I might get worse or I may go up & down?

At least I know that whatever the future holds, God is in control. None of this takes Him by surprise! I have to lean on Him to carry me through each & every obstacle! All this pain & scary symptoms makes me long for Heaven a little more! So I press on! I will walk through this step by step. I may never know the correct answers to all my above questions. I'm so thankful my Savior is my comforter & friend. I can vent my feelings to Him. No matter how scared & overwhelmed all this makes me, I'm thankful for it! Without it, I would not have as close a relationship with God. I would not be the person I am today. I still have tough days. I still cry. But I have hope! Hope that one day I will have no more pain! Thanks to Jesus dying for my sins & rising again! He is my living Savior & Lord! May He use my life to bring Him glory and help someone else through tough times!

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Another update

It's been awhile since I've posted. Since I've had no answers, I really didn't feel like posting. I had my MRIs several weeks ago & was supposed to see the neurologist last week. His office cancelled that appt & couldn't see me until Nov 4th. We called back & stressed that I needed to be seen before that, so I saw the nurse practitioner today.

The good news is that my MRIs are clear. So no MS! There is some arthritis in my cervical spine but according to them it is normal changes with age. They feel that the numbness/tingling is my fibromyalgia. She did listen to my concerns about the weakness/feeling off balance. I also stressed that I'd like to get back to walking, but fear I might fall.

After some testing in the office, she ordered an EMG with NCV. Confused yet? :-) An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. They will compare these to the studies I had done 1 1/2 years ago to see if my muscles are actually weaker or if it's a nerve signal issue.

After these tests, she said I'd probably be sent to physical therapy. She's worried about me falling and urged me to be extra careful until then. She also was concerned that my BP was high. I think it's just the stress over this, but have message in with my primary doctor. Oh & she also asked my primary doctor to up my Effexor. She felt it might help alleviate some of the nerve symptoms. I felt like it was a productive appointment. No real, definite answers but movement in the right direction.

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I'm gonna be alright!

I've been struggling a lot! Anytime you don't know what is wrong with your body, you struggle. It's always a roller-coaster of emotions.

I went to my regular doctor who confessed to me that he has no idea what is going on with me. He said we will wait to see what the MRI shows & then go from there. It was refreshing to have my doctor admit I have him stumped.

Last week, one of our elders at church preached about giving thanks & praise to God! This week, one of our missionaries, Dave Weston, preached on prayer! We need to become prayer warriors! We need to become impudent people who are so impassioned for Christ that we become people of prayer! Through these 2 sermons, God has laid it on my heart that I need to use this "down" time more effectively. I need to pray more for all those around me.

I was also blessed today after church by 3 wonderful, lovely ladies who came over to me & prayed over me! I didn't feel any different physically, but wow! My mood was lifted & a feeling of peace washed over me! I felt God whispering to me "You're gonna be alright!" I knew at that moment that no matter what the diagnosis, I would be alright! None of this is a surprise to God. My prayer is that whatever the diagnosis, whatever I have to go through, whatever obstacles I have to face, God will carry me through & He will be glorified through me! I pray it will be obvious that I could not get through this current health challenge without God's strength & God's Grace!

 

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Struggling!

Let me start with the more positive stuff. I had my neurologist appointment that my Hubby set up for me after all my bloodwork came back mostly normal. I know nothing new yet, but I'm scheduled for a brain MRI & cervical spine MRI at the end of the month. Hopefully in 2 weeks I'll start getting some answers.

Now to my struggles. I have to say that I'm doing fairly good coping with the physical symptoms of numbness, tingling, pins & needles and burning. The weakness, on the other hand, is causing me some struggles.

Walking slow because I feel unsteady is the worst. I've always been able to walk through my symptoms. Now I'm struggling to walk across a room without something to hang onto. When I do have something to hang onto, I wear out very, very quickly.

From the outside, I look okay. I have put on some more weight (which is part of my struggling), but I don't look sick. It's the hidden things that make it hard. I get overstimulated easily which makes a roomful of people hard, or even just my kids all talking at once. My brain works slower than normal. A simple thing like taking sermon notes becomes almost impossible because my hand can't keep up with my brain which can't keep up with what I'm hearing. I'm finding my spelling skills have deteriorated. My vision is blurry a lot of the time & I sometimes feel off-center.

I'm only 42 (almost 43), but I feel like I'm 80! I hate that my kids are worried about me. I hate that my kids have to fix their own meals many days. I hate that I'm at my highest weight ever (even higher than my full term pregnancy weight)! I hate that i feel ugly because of this & because all my clothes feel tight & small! I hate that my Hubby has to worry so much about me. I hate that my Hubby has to carry much of the load around here when he's home from traveling. I hate that my parents have to come up & help me when I should be helping them! I hate that I don't know how to let my friends help me even though lots of them have offered. I hate that we (my family) can't do a lot of things because I don't feel up to it. I especially hate that I don't know yet what I'm fighting so I don't know HOW to fight it!

So for now, I have a good cry then just try to get through each day until I have answers. I try not to give in, not to play the what-if game, and not to dwell on myself too much! I'm so blessed & have so many who love me. I KNOW God is in control & there is a reason why I am here & going through this. But even though I know this, I still waver. I still put my eyes on myself & my problems. I still struggle! So pray for me! And let me know how I can pray for you.

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Not just fibromyalgia!

3 insignificant words yet together they mean the world to me!

 

Since my diagnosis of fibromyalgia over 15 years ago, it seems doctors want to blame everything on it. It's like fibromyalgia becomes anything & everything to these doctors. I don't fit the normal expected patient on anything. None of the fibromyalgia meds work on me. I have weird symptoms. I get weird tests results.

 

I've had doctors that were convinced I had thyroid issues after examination & then tests all come back normal so it's just my fibromyalgia. My doctors were convinced I had MS 1 1/2 years ago but because MRI & spinal tap were clear, it's just my fibromyalgia. I'm at a point of wanting to give up on doctors...

 

Then yesterday I had a doctor's appointment with my primary doctor. For almost 2 weeks, I have had constant body-wide tingling, numbness & other nerve symptoms. I've also felt weak, like I could fall. I was so nervous about my appointment & was convinced I was going to get the "it's just fibromyalgia" line.

 

We talked about my numbness & weakness. He was concerned about my blood pressure being low so he adjusted my meds. Then he tested my strength. I really thought I felt weak because my legs/feet were numb but I couldn't even push his hands up with my legs! And he was easily able to push my arms down.

 

Then my doctor said those 3 words - "Not just fibromyalgia!" He is really concerned about the weakness. He's hoping it's something simple like a vitamin deficiency or anemia or thyroid. But he's going to keep looking till we figure it out. I go back in 3 weeks.

 

I don't want to have actual weakness. I don't want to have something else wrong with me, but I'm relieved to know that I was right! It is more than just fibromyalgia! Once we figure it out, then I can work on a plan for dealing with it! It's always easier when you have a diagnosis. The not knowing can drive you crazy as you go through all the "what ifs!"

 

So for now, I take it easy. I need to stay aware of the weakness, just go with the numbness & keep a positive outlook. I need to be thankful for what I can do! God will carry me through & give me the strength to deal with whatever diagnosis comes my way!

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