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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Bam! One minute feeling good...

Then the next your symptoms over take you. This is life with a chronic autoimmune disease! It's enough to drive you to the edge of sanity.

I'm blogging this so I have a record of it. Sometimes the details blur & it doesn't seem so important later.

Today I was feeling fairly good. I was enjoying worship at church. Suddenly my whole body gets this tingly weird sensation. This was immediately followed by a heaviness. My body suddenly felt like it was lead! I sat down thinking it would pass rapidly. I don't remember much of the sermon as even my mind felt heavy. After church I walked out but felt weak & my limbs felt heavy. I was afraid I would stumble & fall. Hubby said I looked ok, just a little tired & stiff.

I felt a little better after walking to van & was able to go to lunch. Lunch seemed to give me energy & I was able to drive home from dropping Hubby at airport.

About 4 hours after this episode started, I suddenly felt very fatigued. Fortunately we were back home. I took at 3 hour nap on couch. I'm still feeling very exhausted & my body is tingly/numb all over. I'm also having some burning sensations & pin pricking sensations.

The numbness/tingling is something I've been dealing with for the past year or 2. But the heaviness was a new symptom. It's all kind of scary & my mind keeps wanting to go to all the "what ifs" that fill my mind.

Supposedly, according to my neurologist, this is all fibromyalgia symptoms. But after living with it (fibromyalgia) for most my life, this sure seems like something more...

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