Chronically Fatigued and Intrigued

22/f/Student RN/ Graduating May '16/ CFS and fibromyalgia/ PIsces/ probably actually 12 ducks in a trench coat. 

[chronicallybeth]

Another whine.

Tired is staying up too late last night and now you’re not feeling tip top.

 I am not just tired.

What I feel is constant. It doesn’t matter how much sleep I do or do not get. I would still fall asleep every lecture (thanks to those who would be on guard and wake my ass up). I still can fall asleep pretty much anywhere as long as I has some semblance of comfort. I’ve caught ten minute naps on benches, study rooms, and computer labs on my university. I have fallen asleep within moment of walking into my apartment and then laying on the floor. My roommate eventually woke me up so I could relocate. I don’t know what to do anymore. 

Dietary changes haven’t helped much. Intense exercise does not work. I go on walks and hikes, but if I overdo myself, I pay for it the next couple days with post exertional malaise and pain.

Caffeine does not work. Provigil does not work. Ritalin does not work. Adderall does not work. Adderall ER does not work. I am exhausted. All the time.

Maybe the Kennedy Krieger Institute will have some answers for me. But honestly I don’t know. What can they tell me that I don’t already know?

Whether they switch my diagnossi from CFS to mitochondial disease, what will that change for me? Honestly, nothing.

I’m still exhausted. I am still in pain. My dad is still dead of mysterious reasons. 

Honestly this blog has turned purely into a complaint blog, and I don’t care. Its an outlet. 

[chronicallybeth]

Guilt

Today I am exhausted, and for that I feel guilty. My day was fairly productive...some chores and errands completed and lots of studying for my upcoming NCLEX, but my level of tiredness should not be this great based on what I did today.  I thought that getting a “diagnosis” would help with the guilt. That I would understand that I am this exhausted due to disease, not laziness or inability. Unfortunately, thats not the case. Logically, I understand that my limitations are not that of an average person, and that it is okay. But emotionally? I don’t look at the disease as an answer to why I am feeling horrible, as I should. I just feel so...disabled. I feel incapable of living like a normal person. Ugh. Oh and my knee hurts. 

[chronicallybeth]

Hidden

A month or so ago I started coughing. I’ve just assumed its been allergies. It has slowly been getting worse without me really realizing it.

After a night of coughing and wheezing at my aunt’s house last Sunday, my family convinced me to go to Patient First. There I found out I had bronchitis with a “touch of pneumonia.” Oh. Woops. I was immediately given a nebulizer treatment, and then sent home with antibiotics and an inhaler.

I have been on the antibiotics for three days, and today I woke up not absolutely wrecked for the first time in a while.  I just assumed all this new fatigue was from my CFS, but no…it was my body being wrecked from fighting off this infection. How obnoxious is that? New illnesses hiding beneath the existing. Now every time something changes, I need to figure out if its what I already have or something new. Fun, fun, fun. But anyway, this means I am getting over this bullshit living in my lungs, which is a good thing.

[chronicallybeth]

Two - Faced

I’ve loved wearing make up for a while. It was a fun and special ritual before going to the mall, out with friends, or seeing my cousin who will one day probably fly away on the wings of her eye liner. I wouldnt beat my face every day, because that means more time doing things in the morning and less time eating and sleeping.

This past month or so, I cannot leave the apartment without makeup because of how sick I look without it. The circles under my eyes are dark. I look gross and I hate it.

I fell twice this weekend, like a little old woman. Im sore and have bruises. One is particularly colorful and on my ass. I also bled from my pinky.

Ugh

[chronicallybeth]

Disease Progression

1996 - Father dies of central sleep apnea. Cause of sleep apnea unknown. 

March 2002 - Woke up and unable to use legs. My physical therapist mother scooped me up, took me to work with her where they worked on me all day. They said it was because I walked on my toes and my calfs muscles just spasmed and became too tight to support weight.

2007 - got mono

2008 - Weakness in legs. Absent reflexes below waste. MRI shows bulging of T11 but not enough to cause issue. ER doc says maybe a “mild case of” Gulliean Barre (sp?) from my mono last year. Resolved its self with help of steroids.

2010/2011 - Diagnosed with depression and anxiety. Increasing levels of fatigue. Muscle and joint pain. Went to rheumatologist and Johns Hopkins and had numerous diseases ruled out. Eventually resolved self. 

2012/2013 - Fatigue progressively worse. Sleep study completed. Diagnosed with delayed sleep phase disorder. Prescribed Provigil. Helped fatigue moderately. 

April 2015 - get first migraines. Begin having 1-2 per month.

Summer 2015 - Tingling and numbness begin in arms and legs and well as pain.  Went to ER. Low magnesium, but no other abnormalities. MRI reveals minor white matter lesions. 

Sept 2015 - parathesias begin to lesson, but pain and fatigue worsen. Neurologist tests for everything under the son. Repeated negative tests. Attributes lesions to migraines.

Fall 2015 - see new PCP. DCed Provigil. Start Ritalin. Didn’t help.

January 2016 - Diagnosed with fibromayalgia and chronic fatigue syndrome. Put on metropolol. DCed after one dose. Starte lyrica. Helps moderately. Started Adderall. Helps sometimes.

Currently: In pain often. Fatigue worsened. Less parathesias. Currently evaluating possibility of mitochondrial disease. Awaiting appointment at Kennedy Krieger Institute. 

[chronicallybeth]

Overstretched

Well I guess I found my limit. Last week I overworked myself and I knew it. I borrowed spoons from the next  couples days. I borrowed so many spoons that if I were a maid, my boss better be checking her silver.

This was different than normal though. This was the first time I was more than just extra fatigued the next couples days. I was so overworked I was physically impaired. In fact, I still am. 

I worked a 12 hour night shifts from Thursday 6:30p-Friday 6:30a. Then starting at 7:30am I had a mass casualty triage simulation i volunteered for.

Friday night I had the worse nerve pain I have ever had. I was in tears. I ended up taking nyquil to just pass out and sleep.

Saturday I could barely walk. I still can’t do stairs easily. My knee will give out. My legs are weak and in pain.

I’ve always been an outlier. I’ve never been typical. But this is the first time I am starting realize that I am, in fact, handicapped...and I hate it.

I had to have my mum help me off the couch. I went to take a bath and she was worried I would slip and fall like some old woman. I don’t want this to be my life. For fucks sake.

[chronicallybeth]

Death, Birth, and Genetics.

My family is is a sleepy one.

My father was always tired.Constantly. During his wedding reception, his best man even told a story about him falling asleep on a barstool in a busy and loud bar.

My mother told me some days he would slur his words after work, just from pure exhaustion. 

Despite all this he was an amazing father.

In 1996 he went back to his home state for a wedding. He never came back. There he died in his sleep of central sleep apnea. Doctors knew he had sleep apnea, but weren’t sure why. He wasn’t overweight, and they tried an uvulopalataopharyngoplasty (basically, scoop out your uvula, tonsils, adenoids, etc to see if you can breathe better) and that didn’t work. The inability to breathe wasn’t because of a blockage. It was his nervous system. I was two years old.

My aunt, his sister, is an amazing woman. She is almost exactly like me and lives out in the Californian desert. She has frequent spells of fatigue, chronic pain, diagnosed with fibromyalgia, etc. 

Another aunt, another one of their sisters, had MS and died of it fairly young. 

Their father was also known for falling asleep all the time

It CAN’T be a coincidence that I have the same symptoms: the pain, the fatigue, a diagnosed sleep disorder, depression, anxiety, etc. This led me to do more research into mitochondrial syndrome (or disorder. Same thing). Basically, its a disorder where your cells’ mitochondria don’t function as well, and can’t meet the energy needs of the body. I’m trying to get an appointment with a specialist to she was she thinks.

But the worst of it all is the idea that my dad was 36 years old, and he just died. No one was expecting it in the least. It was devastating, and it still is. 

What if that happens to me?

[chronicallybeth]

Where do the spoons go?

I’ll be referencing Christine Miserandino’s spoon theory in this post, so if you aren’t familiar, look it up.

My spoons are all disapearing. Each day I have less and less. It is taking my longer and long to get out of bed. I’m trying to go for walks every day. I am on nutrisystem and have lost around 5 pounds so far. I’m doing well with my meds, but my energy is leaving me even more. 

I also randomly threw up again the other day. Just playing mario party, got sweaty and had to run and throw up. Best friend was to the rescue though with a cold glass of water, a head band, and my Rx of Zofran.

Stimulants are a joke. Adderall, ritalin, and provigil have all proved to be ineffective. I get hyper and chatty for 20 minutes and then its gone. Even Adderall ER. 

[chronicallybeth]

Complaints.

The fire is starting mid forarm. The flames lick their way along each nerve, each muscle fiber, into my fingers and thumb.

Its not on the surface, as if my skin were on fire, but deep in the muscle, running parallel to the bone. I wish I could detach my arm like a barbie doll.

I’ve been on lyrica for a couple months now and it has helped with these nerve pain attacks, but they still come, and still very few things help. NSAIDS, tylenol, hydration, etc. don’t come any closer to smothering the fire.

I’ve tried studying, Nintendo, and Law and Order SVU (a new episode, too) to occupy my time, but i’m too distracted by my arm. 

But I must count my blessings. At least its not my legs. Today, at least.

Additionally, I had to take a huge test today (the Exit HESI for people in the know) and FELL ASLEEP DURING IT for 20 minutes. Going back over my incorrect answers, I didn’t even remember answering four of them because I did it in my sleep. Did I mention this was me on Adderall and 8.5 hrs of sleep. 

I am so sick and tired of bring sick and tired. I am so EXHAUSTED having people not understand and roll their eyes when I tell them I have fibromyalgia and CFS. Those are not diagnosis....how can they be when there is NO understanding behind the mechanism of the disease?

Fuck me, man. I just want people to understand. I just want to be awake. I want to live life and have fun and not have to worry about if I can stay awake through a simple trip to the mall. I don’t want to have to constantly “count my spoon.” 

And now the pain is starting on the left arm too. 

Happy Monday, everyone.

[chronicallybeth]

Boring

Fatigue is making me boring.  I am a social, fun-loving, outgoing person. I love to talk and joke and laugh. I like going out and exploring.

But lately, I have felt my fatigue dull who I am. I try to be fun and try to laugh, but I am so tired I am honestly working on keeping my eyes open.

On sunday my Mum came up to school to visit me with brunch. It was awesome and I loved it. It was an amazing surprise. But I was so tired, I dont know if i was able to fully get across how awesome it was she was visiting. 

I like who I am socially. I like who I am as a person, and seeing my constant fatigue EATING AWAY at who I am is heart breaking. I dont want to see people or leave me bed because I am too tired. I am becoming boring, dull, and sleepy. I hate this.

[sarajxne]

that shitty feeling when you wanna go out & be social, but once you’re out, all you wanna do is be back at home

[chronicallybeth]

Going to write a post on this later. 

[chronicallybeth]

Zzzz

I’m currently on Adderall. I’ve been on ritalin. I’ve been on Provigil. These are drugs that people buy, sell, take illegally, get hooked on. These are drugs that people called prescription speed. I’m sitting here falling asleep witth Adderall in my veins. Seriously? Its tiring to be tired all. the. time. 

[chronicallybeth]

But to focus on a positive...

...the Lyrica is really working for my leg and arm cramps. Haven't had nearly as many since I started it.

[chronicallybeth]

Update and Question

Went back to the doctor and told her about my frequent muscle cramps. She said I probably have fibromyalgia too. Great. So i’m on lyrica for the pain and blood pressure meds for headaches and augh,

Last night I had a migraine, took an Imatrex and went to bed. Woke up this morning with an awful migraine hangover. Feels like the right side of my head was hit by a bat, i’m nauseous, sensitive to light,and just feel like shit. I even threw up :( SO question to you, how to deal with migraine hangover?

[chronicallybeth]

Pain

I’ve been getting this muscle cramps. One day this week i went to sleep in pain, and woke up and the cramps were still there. They feel like a stretching/burning deep inside the muscle, like when you exercise and get a burning cramp, just all the time. ugggh. How to stop this?

[chronicallybeth]

Oh my gosh.

Every day I keep up as if I'm normal. I act like I'm fine when the person I'm walking with wants to do the stairs instead of the elevator. I act like walking to class doesn't feel like a marathon. I act like I'm not a zombie all the time. But I am. I do what I can to not look like a fucking invalid all the time but the act itself is exhausting. I'd show what I'm feeling and what I need, but when I try people thing I'm just lazy and get frustrated. There's no winning with this.

[chronicallybeth]

Support

I am so lucky that I have family members who understand, or at least try to, what I'm dealing with. I have people who love me who ask how I'm feeling, or send me interesting articles on CFS/ME or chronic illness. They ask how I am doing and really want to know the answer, and they haven't lost interest now that my diagnosis isn't something "scary" to them. Like a lot of people have. A lot of people have let me down, but even more have lifted me it up and it is to them I turn and for them I am thankful.