I finally have some answers

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December 22, 2014– I remember the exact date because I remember what I needed to so that day but couldn’t. I woke up with a sharp pain in my left elbow. I thought I might of bumped it and chipped the bone. I couldn’t straighten my arm and gripping this was painful. I decided to rest it a bit.

February 2015- The pain in my elbow hasn’t gone away and now I have a sharp pain in my right hip. I decided to start working out again. Maybe the pain was my body’s way of saying it wants to move around and get stronger.

May 2015- I started running. My ankles started hurting. I figured it was because my ankles were weak. However I was starting to have pain all over my body and in strange places. By the end of May I could hardly get out of bed. My husband told me I should go see a doctor.
After my first visit the doctor sent me for a ton of blood work. He was checking for rheumatoid arthritis, lupus, MS, malaria, Lyme and a slew of random issues that could be causing this all over pain. My tests came back and they were all good. The doctor decided it would be best if I saw a rheumatologist. He felt it was either RA or fibromyalgia. The problem was one couldn’t see me until October. So he put me on an anti-inflammatory. It didn’t help much but I just kept taking them.

October 2015- By now I’m in so much pain I can’t even do easy housework. My left arm is so weak that I have to ask my kids to open my deodorant. I’m so weak in my arms I can’t even do up a zipper.
I finally get to see the specialist. I mention to her about the family history of fibromyalgia but she didn’t want to consider that. She sent me for more blood work and to x-ray my bad spots.

November 2015- I see the specialist again. My blood work and x-rays look fine. She decides I should go for a full body MRI. At this appointment she could also see I was in bad shape, that I was hurting bad. My first appointment with her I was having a semi good day and she couldn’t see the true pain I was in. At this appointment I was having a very bad pain day. In a way I was thankful I was having a bad pain day so she could see how bad I feel.

January 18, 2016- I have my MRI. I’m just hoping they can see something, even if it was bad. I didn’t want to keep on going with this pain with no answers. I didn’t want to be told I was imagining this pain.

IMG_0867Every time I see a doctor they ask me where I have pain. I tell them everywhere and they say, “no, specifically where is the pain?”

I say I ache everywhere but I also have stabbing pain in certain parts of my body.
-My jaw hurts so much I sometimes don’t want to eat.
-I have pain down the back of my neck and get headaches a lot.
-I have sharp pain across the back of my shoulders. It’s also hard to hold my arms up when I drive.
-My left elbow has a constant stabbing pain.
-Both wrists hurt. Kind of like when I had carpal tunnel.
-The tips of my fingers tingle.
-My lower back feels compressed and hurts more when I’m standing.
-My right hip is unbearable. It has a stabbing and ripping feeling with any movement.
-Both knees have pressure pain.
-Both ankles hurt and feel like they are popping when I walk.
-My toes tingle.
-I’ve also lost strength in my left arm. I often have problems opening things or doing up a zipper.
-My left eye is always twitching.
-Recently I’ve been having dizzy spells. It feels like I’m tipping to the left.

I’m starting to learn how to just live with this pain and trying to learn to function.
I miss being able to workout daily. I miss being able to sit on the floor to play with my kids. I miss being able to open simple things like a jar or my deodorant. I’m thankful I have not become depressed. I’m down some days but not depressed. I think if I was depressed the pain would be worse. So I’m thankful for the mental strength I’ve been given.

February 3, 2016- My MRI tests have come back. They all look great. When I heard this I cried. “So, what’s wrong with me?” The doctor finally said, I think you have a chronic nerve disorder, specifically fibromyalgia. She told me I’d need to find a family doctor and start on medications. I would also need to meet with the arthritis association to work on a exercise program. That hopefully in a while I’ll be able to start functioning like normal again.

Feb 5, 2016- I’m out looking for a family doctor. I visited over 30 doctors. I found a few taking new patients, but they can’t start seeing me until the end of April. I’m hoping on will have an opening soon so I can start getting better sooner.

IMG_0865Feb 9, 2016- I sit here at the school in my car waiting for it to be closer to bell time to get my kids. Today my body is weak. The short walk to the door from my car seems a million miles away. The thought of standing for 5-10 minutes waiting for the bell to ring is exhausting. This is just a day in my life. A life I’m learning to deal with. A life with fibromyalgia.

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So, I’ve been diagnosed with chronic nerve disorder, specifically fibromyalgia. Basically my brain is telling all my nerves that I’m in pain. It often mimics rheumatoid arthritis. I have a memory fog a lot of the time and it takes me a lot longer to do the things I want to do.

I heard about the spoon theory a few years ago. Basically someone suffering from a chronic disease has a certain amount of energy spoons. Each task you have to do takes away one of the spoons. Some days you run out of spoons before lunch. Simple things like preparing a sandwich or taking a shower wipe out a few spoons at once. I get this theory now. I find a shower wipes me out for the whole day, I find I can do 1-2 showers a week and I have to plan them on less busy days. Getting out of bed is a huge task for me. Not because I’m depressed, but because I’m exhausted from a restless sleep because of pain. I know once I’m out of bed I won’t be able to get a nap either- the pain kicks in big time once I start moving.

I have hope of having good days again. I have hope of remission. I have hope of running again someday.
It’s going to be tough. I’m going to have many bad days. But I know I can push through. I may have days where I feel I can do anything (and will try) and I may have days that will have me bedridden.

Please don’t tell me it’s not that bad. I hurt, everywhere, all the time right now. For me it’s bad. For others maybe they can tolerate pain 24/7 for the past year and a half. But for me it sucks.

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