Excessive Daytime…ZZZ…Sleepiness

bunny-falls-asleep-at-desk.jpgWhen was the last time you woke up and felt rested? energized? restored?

For me, it’s been so long that I honestly could not tell you. All I can say for certain is that it has been several years. I sleep at night because it is necessary not because I expect that it will help me feel refreshed to tackle the next day. Even worse than not waking up refreshed is waking up exhausted and with terrible headaches.

There is not a day when I don’t battle the fatigue and sleepiness that has resulted from my lack of truly restful sleep. The sleepiness has gotten so bad that I relished commuting to school/work, 45 minutes each way because it meant built in rest into my day (even if it wouldn’t help me feel better). On the weekends, I awake only to find myself nodding off again within an hour then by 2 pm the overwhelming need for a nap hits me again.

Don’t be fooled, though. I do not mean to say that I feel drained in the early mornings and then again in the afternoon. I am fighting the sleepiness every moment I am awake. There are just times when that sleepiness is so profound that I am unable to resist it.

At these moments, my head and body often feel heavy as if I’m dragging extra weight. Keeping my eyes open is a battle because it can be painful to keep them open.

Sleep disturbances are commonly observed with fibromyalgia, and there is plenty of evidence to show that poor sleep increases pain levels. Although I had gotten a sleep study done a few years back which the doctor’s said showed no explanation, I have felt determined to tackle this issue.

This time, I started with an ear, nose, and throat (ENT) specialist since I know, from my husband’s numerous testimonies, that I snore very loudly. After the (always too short) examination, the doctor thought that using a nasal spray for a few weeks would help open up my airway and lessen the snoring. That was an experiment, however, was a complete bust.

The doctor was curious to see if I could potentially have sleep apnea, so she had also ordered a sleep study. I was a little leery of getting a sleep study again since the previous one showed nothing. Let’s face it, the fact that almost every test they’ve ever thrown at me shows nothing out of the ordinary makes me never want to get any tests. However, I relented and figured it was worth a shot.

A few weeks ago I went to the sleep clinic for my study. It was just as annoying as I remember the previous one being. You get hooked up to a million wires that are meant to record eye movement, leg movement, pulse, oxygen, brain waves, etc.

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I’m not entirely sure how but I managed to get some sleep during the night. However, much like every other night, it wasn’t restful. All the technician would tell me is that I definitely snored but I would have to wait for the results to get further analysis.

In the meantime, I got myself a referral to a local sleep specialist. My hope was that if the ENT was a dead end then maybe this specialist could help with some sleep hygiene practices. Without seeing my sleep study results, the specialist couldn’t be 100% sure but he was willing to bet money that my study would show sleep apnea.

Two days ago, I got a call from my sleep specialist and he was happy to report that my results did show moderate sleep apnea. It may seem strange to say this is a happy thing but I’ve already discussed why I’ve come to appreciate abnormal test results.

What does mean moving forward? Well, I need to go back to the sleep clinic to get fitted for a CPAP machine. The machine will help keep my airway open and allow me to get deeper sleep. After my fitting, I will need to use the machine for about a month then go back for the sleep specialist to see if it is indeed working properly.

I’m not sure how long it will take for the excessive daytime sleepiness to fade after starting the CPAP but I’m hopeful that it will get better with time. Fingers crossed, it may even go away completely. Wish me luck!

 

Aspirations for 2016

The start of a new year is upon us, which means all sorts of posts about resolutions popping up on my Facebook feed. I tried the last few years to have some resolutions but the chaos of grad school, which makes having any life outside of research quite difficult, made it pretty hard to see some of them through.

Now that grad school is complete, and my life has some consistency to it, I figured this is as good a time as any to set some goals for 2016. Here are the things I aspire to achieve before 2017:

1. Learn to swim well enough to complete a few laps of the pool without needing a break. Swimming is not my strong suit since I didn’t get the chance to take lessons growing up. Currently, I can barely make it from one end to the other before getting exhausted. However, time and again I’ve heard how great swimming is for those of us with fibro, so I want to be able to add it to my routine.

2. Practice archery more consistently. I fell in love with archery in 2012, after my hubby took me for a lesson, and never looked back. However, I would sometimes not practice for weeks or months at a time when things got hectic in the lab. My goal is to get some practice in twice a month.

3. Share the “burden”. I have been married to my incredible husband and best friend for 6.5 years. Total we have been together for just about ten years. He has been an incredible support system not only through graduate school but since the onset of my chronic pain. However, I still struggle with sharing my struggles with him. In the back of my mind, I still worry about “complaining” too much about my condition for fear that I will seem weak or needy. He is always reminding me that we are in this together, and he can’t help if I don’t tell him what is going on. I am going to be better at sharing with him how fibro is affecting me.

4. Bring reading back into my life. Before college and graduate school, I was a reading machine. Once I had to start reading science papers all the time, reading for other purposes took a back burner. Fatigue has also made it difficult to read since I am liable to fall asleep quickly any time I sit still for just a few minutes. However, I miss the escape that reading an excellent book can provide, so I am ready to start reading more so I am taking a reading challenge with some of my friends.

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5. Keep up with my blog. There were quite a few periods of silence in my posting last year, which makes me sad. Blogging is rather therapeutic, and it is a wonderful feeling knowing that sharing my story has helped others. My hope is to blog more regularly this year and stay better connected with those of you sharing this journey with me.

2015 in review

2015 has been quite the year! I completed my Ph.D., got a job, and moved across the country. Through it all I had a great support system for which I am truly thankful.

Thank you to all you that have tuned into my posts and provided words of encouragement!

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,600 times in 2015. If it were a cable car, it would take about 27 trips to carry that many people.

Click here to see the complete report.

Weight Loss For Better Health

Recently, I moved to California after my husband was offered a job in Silicon Valley. Among other things, this meant having to find all new doctors for my existing conditions as well as some other issues that I’ve meant to get taken care of.

Going to these new physicians, I expected the questions and comments trying to gauge whether depression was the culprit of my health woes. After all, several symptoms of fibromyalgia and Hashimoto’s overlap with symptoms of depression.

What I wasn’t expecting were the comments about my weight.

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I took this picture just today. I am 29 years old, 5’1” tall, and weigh 142 lbs, which according to body mass index (BMI) means I am overweight. To fall within the normal weight BMI range, I should be somewhere between 100 – 132 lbs.

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I don’t know if it is just me but that range seems kind of insane. Assuming that I will be conservative with my exercise to prevent a fibro flare, I would need to confine myself to 1,296 calories/day (practically starvation mode) to lose 1 lb a week.

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To be perfectly honest, I am struggling a little bit with the idea of needing to be in this idealized weight range. On the one hand, my family has a history of diabetes, putting me at greater risk. I have enough health problems as it is, so if I have the opportunity to prevent adding another one to the mix I should take it, right? Yet, on the other hand, a weight of 125 lbs seems too low.

Looking in the mirror before the doctor’s mentioned anything, I was not bothered by my weight. There were many things that I disliked about my body (adult acne, muscle spasms, my crazy inconsistent curly hair) but I was finally at a place where weight wasn’t one of them. Feeling comfortable with my current figure made me question whether I should try to lose any weight at all.

Ultimately, I decided to shed some pounds but aim for a goal weight of 135 lbs while losing 0.5 lbs a week. Figured it would be easier for me to stick with the weight loss plan this way since I wouldn’t have to feel like I was starving myself to achieve the goal. This will also let me not have to stress about exercise to the point that I force myself into overdoing it for the sake of burning a few extra calories. The last thing I need would be to set off a fibro flare that sets me back mentally and physically.

Hopefully, losing some weight will help reduce my snoring (one of the things I was seeing the doctor for and a reason they suggested needing to drop the excess pounds). I am fairly certain I have always snored regardless of my weight but maybe it will be less intense/disruptive at a lower weight and help me get more restorative sleep. Diabetes should also become less of a concern, which will mentally give me some piece of mind.

 

 

 

 

 

 

Yay for Abnormal!!

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I got a phone call yesterday that made my day. It was my new GP who had called to tell me that my thyroid-stimulating hormone (TSH) test came back abnormal.

Wait, what? Did I just say that an abnormal medical test made my day?

Yes, I did. When you have fibromyalgia, you can have a ton of symptoms but have every test they throw your way comes back negative. It is incredibly frustrating to have test after test shows nothing.

I should note that I know I have an underactive thyroid. In 2011, I was diagnosed with Hashimoto’s thyroiditis, an autoimmune disease that can lead to hypothyroidism. However, I have been taking replacement hormones since then, and my levels had been pretty under control since that time.

The past few weeks my fatigue and cold intolerance have been a bit worse than normal, and my high TSH levels could explain the flare in these symptoms. With any luck, adjusting my dose will help reduce the severity of the symptoms (*fingers crossed*).

The cold sensitivity is what I need to be fixed. As I type, I am wearing two pairs of socks, a pair of leggings under my jeans, three layers of shirts, and am wrapped up in a blanket with my warm laptop on my lap. Despite all of that, I feel as though I’m standing outside on a -10-degree day in Chicago with no clothes on.

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Polar vortex ain’t got nothing on how cold my body can make me feel

Anyway, it is incredibly nice to find something medically recognized and defined that my doctor can provide treatment for.

Beware the duloxetine withdrawal

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For years, I’ve struggled with neuropathic pain. The pins and needles feeling made me feel like my whole body was on fire. Initially, I was started on Lyrica, but it didn’t seem to do much for me. Then they tried to put me on Neurontin, but that made me feel like I was one of the walkers from TWD. I guess it worked because I was so out of it I either forgot about the pain or just didn’t care.

This last year or so, I’ve been taking duloxetine (Cymbalta) to manage my neuropathic pain. At the lowest dose, most of my neuropathic pain seemed to be controlled while not experiencing any side effects. They’ve tried to up me to 60 mg but then I started suffering from insomnia, which only made my pain worse. So I dropped down to 30 mg, favoring partial relief and the ability to sleep (even though that sleep isn’t restorative at least it is some rest).

Unfortunately, there is a big problem that comes with taking duloxetine and that is the withdrawal. If you’re wondering about my absence as of late, it is because I have been in the process of moving across the country to California. My husband got a job in Silicon Valley, and it was an offer we couldn’t pass up.Of course, moving, even with a great relocation package is a stressful and time-consuming endeavor hence the radio silence.

The move means many things regarding my fibromyalgia, many bad and many good. The biggest issue right now is that my prescription of duloxetine has run out, and I don’t yet have a new doctor. The withdrawal symptoms started the very next day around supper time. It was small at first, actually rather tolerable, but then I woke up this morning, and it is only steadily getting worse.

So what does it feel like to withdrawal from duloxetine? Well for me, it means having brain zaps. Imagine the sensation you feel when you get shocked but coming from the inside of your body and multiplied by a thousand (maybe more). What’s worse is that these “zaps” happen anytime I close my eyes, change where I am looking, turn my head, take a step, or move.

The first time it happened I was downright terrified. I had no idea what was going on. I thought I might fall over at any second. Doing a Google search, let me know that I wasn’t alone and that it was a common symptom of missing a dose of duloxetine and other similar medicines. A little less comforting is reading that some people have continued to experience this sensation for as long as a year after stopping their medications. So as is most often the case with fibromyalgia life, I am faced with not knowing: how long will these symptoms last? Will they get worse? Is going back on this medication worth it, knowing that if they take me off, I will have to go through this again?

I guess the one positive to come from this is that I was forced to look for a doctor. If you have fibromyalgia or know someone with the condition, then you probably know the words positive and finding a new doctor don’t usually go together (that’s a topic for another day). I was able to get an appointment for Tuesday. All I can do now is wait and hope that it goes away or, at least, doesn’t get better. Well, that and put on a brave face and push through this just like fibro warriors always do.

K.I.S.S. –> Keep It Super Simple

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The hardest part of living with fibromyalgia is learning to slow down. I could say this a million times (and probably will throughout my postings), but it still wouldn’t be enough.

One of the big frustrations that I face is getting in exercise. I’ve read the science, and I understand the benefits of exercise forbeach-nap-1
someone with chronic pain. However, when you are extremely fatigued, and the floor looks like it would make an excellent bed, it is hard to get motivated to exercise. It is also hard to want to hit the gym when you’re muscles are already screaming in agony just because that is what they do when you have “the fibs”.

I’ve been searching over the last two years or so for how to overcome this hurdle. I’ve tried lots of things from yoga to swimming to hitting the elliptical to personal training.

Yoga has been one of my favorite exercises because it builds strength and flexibility while keeping you moving (especially flow yoga). However, even gentle yoga can be a bit much to handle on days when I am fatigued.

I am still on the fence about swimming. The great thing about it is that it is so low impact, and it works your entire body. The bad thing is that many pools are not heated. Since most of us with fibromyalgia are extremely sensitive to temperatures, this is no bueno on the muscles.

The benefit of personal training is that you get individual attention, and the trainer can help you find the right exercise modifications to help avoid injury. The downside is that you have to look hard for an instructor who understands the nature of fibromyalgia and how to adjust your training appropriately. This is easier said than done and may require spending more money to have a specialized trainer.

My least favorite option has been the elliptical. For one, I get easily bored even though the ellipticals at my gym have televisions on them. Second, even though it is supposed to be low impact my knees just don’t seem to like the elliptical much (probably because of my crazy tight IT bands).

Today I was feeling reasonably alert, and my pain levels were low so I thought I would take advantage of it to get some exercise in. However, I knew that I needed to take it slow since I am still in the midst of a flare up (one good day does not mean the flare up goes away).

I decided to do the one simple exercise that I hadn’t tried and went for a walk around my neighborhood. Why I had never considered just walking kind of baffles me. It’s so simple. Perhaps maybe it seemed too simple.

I was by no means super athletic before I developed fibromyalgia but did dance some. I love the high energy of dance fitness classes, but I can only do them sparingly these days. Like I said at the beginning of this post, the hardest thing about living with fibromyalgia is learning to slow down. My mind still wants that high energy fun of Zumba class, but my body is just not ready for that at the moment.

The great thing about walking is that it is simple and efficient. So for now, I just need to slow it down and K.I.S.S.!

Dear Fatigue

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Dear Fatigue,

Please stop stealing my time with my friends and my weekends with my husband!

Sincerely, 

Leida

Fatigue and I have been inseparable for many, many years now. I honestly can’t remember the last time that felt completely energized and refreshed. I have come to think of it as living my life on a broken gas tank. A gas tank that can never be filled completely and also one with a leak.

One of the hardest parts of fibromyalgia is learning to slow down. Each and every day, I must consider those things that need to get done and weigh that against how much energy I have. On good days, I can get everything done with some energy to spare to do something fun. On bad days (which are more often than the good), I have just enough energy to do the most important things then I immediately get home and crash. On the worst days, I don’t even have the energy to get out of bed.

Lately, my fatigue has been pretty bad. Nap two or three times a day bad and still feel like I haven’t slept at all. Last night, I fell asleep at 10 pm. I woke up at about 7:30 am. By about 11 am, I could feel the exhaustion starting to take over. I tried to fight it for as long as I could but by 11:30 am I was asleep again. I woke up at about 1 pm. As I sit here writing this, it is 8 pm, and I am ready to call it a night.

As much as I try to fight it, I am always exhausted. Deeply and profoundly exhausted. I’ve tried going to a sleep clinic and trying all sorts of tricks to improve my sleep hygiene, but it has all failed. More than anything the fatigue makes me feel helpless.

Pain is awful, but chronic fatigue is a million times worse. How can you sleep for hours and still wake up feeling the same heaviness and sluggishness you felt when you went to bed? How many times can you turn down an invitation to hang out because you are too tired before people stop inviting you to hang out? How do you not feel guilty about sleeping for hours of the weekend away that you should have been spending with your husband?

Self-doubt

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It’s been awhile since my last post. Almost four months to be exact. Why the long absence? Things have been hectic that is for sure. Finished my Ph.D., started an internship, got promoted to full-time, took a small break to visit family, moved to a new apartment.

However, if I am truly honest with myself, a major reason for not posting is that I doubted myself for a time. Why the doubt?

In April, I was referred to a new pain specialist. My fellow spoonies likely know where this is going but for those of you reading to try to understand the struggles of invisible illnesses let me explain. Going to this appointment, there was already a sense of frustration because, for the dozenth time, a doctor was pushing me off to someone else because they just didn’t know what to do with me.

The appointment went like every other appointment with a new doctor. I went through the history of my last seven years struggling with chronic pain; and then he did a physical exam. I was a little relieved during the exam because that day was a good day and those tender points they always check weren’t crazy painful. However, my lack of reaction to at least 11 out of the 18 tender points led the doctor to believe that I don’t suffer from fibromyalgia at all. To this physician, a fibro diagnosis requires you check off every symptom and fit the description that he learned exactly.

And just like that, I spiraled downward into a cycle of self-doubt and uncertainty. After a five-year struggle, to be diagnosed with fibromyalgia was such an enormous relief. Don’t get me wrong it was a complicated mix of emotions. There was a bit of fear knowing this would be a life long struggle. There was a bit of anger and wondering why me. But mostly, there was a lot of relief because there was finally a ‘face’ to put on this chronic pain I had struggled with. I wasn’t crazy! There was something wrong with me.

Then in one foul swoop, I was left wondering once more. I let this self-doubt eat away at me for much of the past four months. Despite being in the midst of a flare for much of the last month, I have refused to go to the doctor. I elected to do what I learned best in those early years and paint a huge smile on my face and pretend that nothing was wrong. However, that only works for so long before your resolve eventually breaks.

Frankly, I am angry with myself for letting that doctor get to me. If there has been one thing I’ve learned through all of this it is that I know my body better than anyone. My pain is very real. My fatigue is very real. Just because a doctor saw me for 15 minutes on a good day doesn’t mean he can make a definitive diagnosis.

I know my body, and I know my pain. I am a fibro warrior!

The “IS IT FIBRO?” Game

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As my life with fibromyalgia progresses, I find that my opinion of what the most difficult aspect of this illness is has changed. When my symptoms first started, I would have said that the chronic fatigue was the absolute worse. Just a few months ago, I might have responded that it is the fibro fog and all its accompanying cognitive dysfunctions. These symptoms suck and probably always will, but lately, I’ve found another aspect of my illness more and more troubling.

I’m talking referring to the uncertainty that accompanies a life of chronic illness. On any given day, I never know how bad my pain or fatigue will be. Maybe I can make it through the day with spoons to spare or maybe I’ll have exhausted all my spoons before it is even time for lunch. Fibromyalgia has really forced me to take things one day at a time (sometimes even one minute at a time).

The uncertainty of the day-to-day is not the only thing that plagues me. It is also the uncertainty of my symptoms. The problem is that fibromyalgia is so poorly understood and the symptoms can vary from patient to patient. So sometimes when I experience new symptoms/sensations it is hard for me to know if it is something serious. With each new symptom, I have to make a judgement call as to whether I can ignore it or seek treatment if there even is any. It feels like I am frequently playing a guessing game “Is it fibro or something else? Does it need immediate attention or probably not that serious?”. I’m fairly certain that most the time my doctor is playing that same guessing game as well.

Case in point, I have started to notice that I intermittently experience sensations of dizziness. Out of nowhere I’ll be hit with dizzy spells so bad that simply blinking seems to make everything spin. I used to notice it when I had forgotten to take my fibro meds but I’ve had the symptoms the past few days despite taking my medications. Ultimately, I decided to go to the doctor about it because it has rendered me useless for one too many days. I ended up seeing a nurse practitioner who said it is probably benign paroxysmal positional vertigo (BPPV) and will hopefully go away in a few days. So maybe these dizzy spells are completely separate from my fibro or maybe they aren’t. Dizziness has been reported as a symptom associated with fibromyalgia but rarely does it seem to be specifically BPPV. I guess only time will tell.

For now, I’ll just try to take everything in stride.

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