Question of the Week: Up All NIght?

Insomnia has never been my thing. I have always been the girl who gets plenty of sleep at night. Even back in college, if I was up all night, I made up for it by sleeping in the next day. And after my early 20s there was no way I could stay up all night.

Before my trip-and-fall, before the fibromyalgia diagnosis, before my life with chronic illness, every once in awhile I'd have problems sleeping at night. Now it's become an almost a daily occurrence.

At first I tried all the things you're supposed to do when you have problems falling asleep.

I kept a regular bedtime routine, including going to bed at the same time each night. If I couldn't fall asleep right away, I meditated or counted sheep. I didn't get too upset if I couldn't fall asleep. I was patient and waited until I got sleepy. That meant sometimes turning the light back on and reading a book until I felt more sleepy.

Then turning the light back on became the norm.

Now I know, whatever I do, falling asleep at a "decent" hour just isn't in the cards for me. I've given up fighting to fall asleep on a "normal" schedule.  My life is ruled by an altered sleep schedule, my delayed phase sleep disorder.

Every night I'm able to fall asleep before 6 a.m. I consider myself lucky.

I've tried sleeping pills. When I took Lunesta on a regular basis I wound up with horrible rebound insomnia. I tried antidepressants to help me sleep better, but I haven't had such great luck with those kind of medications.  My last attempt was using an anti-psychotic medication, Seroquel, which was prescribed off-label for me.  I stopped it a few months back because it was contributing to poor control of my type 2 diabetes.

I had a sleep study done and was diagnosed with sleep apnea. I religiously use an auto CPAP machine which is effectively managing this disorder.  I wish I could tell you that I am getting better sleep and have more energy, but I do not. (In case you were wondering, I did not snore or have other tell-tale signs of sleep apnea.)

It is interesting to note that I suffered similar shifts in my sleep pattern in 1988 when I was being treated for the blood cancer leukemia and in 1995 when I injured by back and spent three months on temporary disability because of the pain.  Apparently there is something to physical illnesses causing sleep disorders.

So how many of you are up all night like me?  Better yet, what have you discovered that has helped you battle sleep disorders?  Please share that valuable information with me here and everyone else over on the Oh My Aches and Pains! Facebook page.

To sleep

A flock of sheep that leisurely pass by,

One after one; the sound of rain and bees

Murmuring; the fall or rivers, winds and seas,

Smooth fields, white sheets of water, and pure sky;

I have thought of all by turns, and yet do lie,

Sleepless! And soon the small birds' melodies

Must hear, first uttered from my orchard trees;

And the first cuckoo's melancholy cry.

Even thus last night, and two nights more, I lay,

And could not win thee, Sleep! By any stealth:

Soon do not let me where tonight away:

Without Thee what is all the morning's wealth?

Come, blessed barrier between day and day,

Dear mother of fresh thoughts and joyous health!

~William Wordsworth

Bits and Pieces: A Sunday Extra Edition

Extra Warmth by somadjinn

Things have been a bit crazy around here.  Thankfully I find myself enjoying a little pause in the action this weekend, so I thought I'd take the time to make up for some missed posts during the week and write a weekend update.

My Family

I got a phone call eight days ago from one of my Aunts back in Illinois. One of my eight cousins died on July 8th from what appears to be complications from type 2 diabetes. He was only 42.

As you know, I have type 2 diabetes too, so the news kind of hit me sideways. Granted, our situations are different, but still it gave me pause. Whenever someone in my family dies, like when my mother died of colon cancer or my dad died of Alzheimer's, I can't help but wonder, "Could that happen to me too?"

My Hands

Earlier this month, I followed through on a recommendation from my visit to the Mayo Clinic in Arizona and saw an orthopaedic hand surgeon here on Los Angeles.  He confirmed the finding that I have significant carpal tunnel symptoms in both hands and that surgery can be a fix for my condition.  This past Thursday I scheduled surgery for my right hand on Wednesday, August 31.

Now my challenge is to stay focused on how much this might help me pain, instead of getting sucked up into the anxiety a pending surgery creates.

My Sleep & My Diabetes

Have I mentioned that I have been using a very low dose of Seroquel, prescribe by a sleep doctor, to help me get better quality deep sleep for a while now?  Unfortunately, this medication is known to cause problems with blood sugar.

Due to my ever increasing Hepatitis C viral load, I've been having more and more problems managing my blood sugar. It's gotten to the point where I contacted my endocrinologist asking if I needed to start a second medication in addition to Victoza.  This week I decided to take a drug holiday. Lo and behold, my blood sugar has dropped from between 180 and 200 to 140 and 180 fasting in the morning. Seems stopping this medication might be the right direction to move in.

I am worried that in the long run this is going to negatively impact my sleep, but I do have a new medication to try from my neurologist that might be able to help.

My Blog

I decided a few months back I wanted a blog make-over. I also decided it was time to hire a real blog designer to help me with this task. My project got off to a really rough start, but I made some changes and hired a new designer.

I am now working with Katie Lane of DreamUp Studios who is making the process a breeze and I am so excited about my upcoming blog redesign. I've loaded a couple of things onto my blog today to give you a sneak peek of things to come.

If you are thinking of hiring someone to redesign your blog or website, create a logo or draw a custom illustration, I strongly encourage you to head over to DreamUp Studios and take a look at the awesome things they can do for you too.

Question of the Week: Waking Up Worse Off?

Image by angelsk via Flickr
If you live with fibromyalgia like I do, then you know that waking up can be painful. Morning is often when my body feels the most stiff.

Someone mentioned to me that this is so because our bodies don't like being in the same position for long periods of time. Of course, when you are asleep, you can't help but be immobile for much of that time.

So it goes without saying that the best cure for  morning stiffness is trying to wiggle, stretch and get yourself moving.

But then there are the mornings when I am just not sure what is going on when I am asleep...

For example, I woke up this past Saturday morning and could not put any weight on my right ankle. I went to bed the night before with absolutely no right ankle pain at all. It was like I injured it horribly while I was sleeping and now I was suffering the consequences...big time!

I have been employing rest, ice, compression through the use of an ankle brace and elevation all weekend. It is helping in small increments, but my ankle still hurts three days later. I almost think a visit to the doctor might be in order, but since this is my gas pedal foot, I'm not quite sure how I would get there safely.

Then yesterday I woke up and it felt like someone punched me in the breastbone.  I hurt so bad right in the middle of my chest.  I struggled for the first few wakeful hours and the pain did subside, but did not disappear completely.

I really have to wonder if aliens are borrowing my body while I am asleep and having a lot of reckless fun inside it.  At the very least, you'd think they could return it in better condition after a few zaps from their advanced healing gadgets.

I'm feeling like a weirdo now, so for my own sanity I have to ask all of you: do you wake up worse off too?

Kindly leave me a comment with your reassuring words here or over on the OMA&P! Facebook page. Let me know I'm not the only one feeling all beat up in the morning!
 

Bits and Pieces: The Weird and the Wonderful

Image via Wikipedia
Fun Facts about Selena

My wonderfully unique name, Selena, comes from Greek origins. I wrote a post about the meaning of my name which you can read here. Now despite my name, I am not of Greek descent. Apparently Selena caught my mother's eye as she flipped through the pages of a book of baby names.

The weird thing about having a Greek name is that I get spam mail written in Greek, which of course I cannot read.

A Hand on Fire

Wednesday evening I experienced a disturbing form of neuropathic pain: the palm of my right hand literally felt like it was on fire.

It all started when I decided to give my husband a nice little break from doing the dishes. The warm water hitting my right hand set this whole pain in motion. It's like my right hand overreacted and miscalculated just how warm the water was.

My left hand said to my brain, "It's tolerably warm."

My right hand said, "This water is scalding hot!"

What did I do? Well, I tried very hard to tell my brain that my right hand was playing tricks on it. I held an ice pack in both hands. I noted how the left and right hands felt, then I told my brain, "The left hand is correct. The right hand is mistaken." I repeated the exercise, placing both hands on my warm cheeks, on the cool leather living room couch and on my warm and fuzzy black cat.

The good news is that the searing, burning pain eventually went away by the time I woke up on Thursday. It was beyond weird and I'm still not sure what caused it. I did however have a wonder-filled time experimenting with it, trying to convince my brain it was interpreting the signals it was getting incorrectly.

I've Fallen Asleep and I Can't Wake Up

Sleep is always a dicey proposition with me, but this past week it seemed like waking up was getting harder and harder to do too. I even asked my husband to rouse me over the weekend in an attempt to try and get back on a more normal schedule. Problem was, I got to the couch and promptly fell back asleep.

I worried I might be getting sick with a cold. I dreaded that the extra sleepiness was a sign a flare-up was on the way. I even considered searching Google to see if this was a weird symptom of a new sleep disorder...

Then I read someone's tweet on Twitter. They remarked that taking their meds late the night before made for a very sleep morning the next day. After reading this I experienced one of those light bulb moments. I realized I was doing exactly the same thing.

All I can say is I follow some pretty wonderfully helpful people on Twitter.

Just Questions: Things I Don't Understand

Image via Wikipedia
Welcome to another edition of just questions. Sometimes I find it's the questions that I am pondering that provide the greatest insight into where I am currently. So I guess creating this post is metaphorically akin to opening up my brain and checking out what is rattling around inside.

So here are the questions I am currently pondering:

1. Why do my dogs always want to lick my feet?
2. Why don't people spay and neuter their pets?
3. How come having problems swallowing has to be one of my symptoms of fibromyalgia?
4. How come when I have coughing spells after said swallowing problems, a nerve shock wave travels down my arms, into my hands and causes increased pain, numbness and tingling for several hours afterward?
5. Why is it so bad to use a benzodiazepine every night to help one fall asleep?
   
6. How come my doctors aren't prescribing the same medications that my friends with chronic illnesses are getting?
7. How come I am still wanting a prescription to be the answer to my chronic illness problems?
   
8. Why isn't the Hepatitis C cause getting the funding, support and attention it deserves for things like public education, testing and treatment?
9. Why doesn't the American public know that more people have Hepatitis C than HIV infection?
   
10. Why isn't there a bigger push to get antiviral Hepatitis C drugs out of clinical trials and into the pharmacy faster?

What are some of the questions you find yourself asking lately? Why not share one or more here by leaving a comment?

Save Me From My Fear...

Image via Wikipedia

For the longest time, I thought I had some lingering, weird psychological damage from my cancer experience.

Some nights, when I was falling asleep, I would suddenly become fully awake and feel panicked. Then suddenly, my thoughts would focus on the fact that one day I would be dead. A sinking feeling of dread, terror and resistance would then emerged and wash over me.

I'm not dying tonight, or anytime soon, I'd say to comfort myself, as I tried to calm myself down and get ready to try and go back to sleep.

So naturally, I started thinking that my cancer experience left me with an acute fear of death. After all, it's not hard to image that being diagnosed with a life-threatening illness, with death as a possible outcome, as well as knowing fellow patients that died from the same illness, wouldn't make a lasting psychic impression. I guess it's never been hard for me to consider that I might be just a touch crazy after all that trauma.

Plus fear of death isn't uncommon, especially when someone is questioning their spiritual beliefs.

Having cancer shook up the religious foundation from my childhood, an upbringing rooted in Catholic schooling. It pretty much left it looking like the ruins at Ephesus, a place I visited in Turkey in 1990 (see the photo above.) Pre-cancer, I believed in Heaven, Hell and Purgatory. Post-cancer, I have no idea what happens when we die. I know I want there to be something and my worst fear is that there is nothing.

So I have gone along with this whole fear of death explanation for my night-time "death realization" episodes all these years. After all, if the shoe fits... Except yesterday I realized that I might just be terrible wrong. I may, in fact, have put the cart in front of the horse.

What I realized yesterday is that my beautiful, logical and poetic explanation failed to take into account my real, tangible and ever-present health problems. I committed the cardinal sin of mental health diagnosis: I didn't rule out physical causes for my symptoms before jumping to psychological ones. I reached a new level of acknowledgment when I recognized that my symptoms of dysautonomia, fibromyalgia and sleep apnea have conspired to create my night-time fear of death.

Now with this new knowledge, I wonder if perhaps I can be saved from my fear.

Stayed tuned! Tomorrow I will talk more about my revelation and what it means for me moving forward...

Linky Love: What Are Other People Saying About Xyrem?

Image by melanie_hughes via Flickr

After spending several years trying to treat my pain, I have come to believe that I should be aiming at the target of sleep. My current thought process is 'if could just get some deep, restorative sleep I might feel a significant difference in my fibromyalgia and fatigue symptoms.' Unfortunately, as I have chronicled here on OMA&P!, even with religious use of my CPAP machine to treat my sleep apnea, other sleep disorders like delayed phase disorder and a lack stage 4 deep sleep every night thwart my best effort.

My revelations impress upon me the fact that fibromyalgia is truly a brain disorder that affects both pain regulation and sleep. I think the medical specialty of neurology is better suited to treat fibromylagia than rheumatology. Current, I see a neurologist who seems to have a lot of ideas about what we can try. I found her after I felt like my rheumatologist had no more treatment options to offer and I decided to stop wasting my time seeing him.

After receiving a comment from Jolene at Graceful Agony: Living your best life despite chronic pain who happened to write a blog post this week also about Xyrem, I decided to check out what other people are saying about Xyrem.

Xyrem: Some Questions and Misperceptions

This is an article from the Talk About Sleep website, which I frequent for information about CPAP tricks and tips. Apparently persons with narcolepsy use Xyrem to help treat this condition. It seems that some people are having good results with Xyrem for this condition, but fibromyalgia is not narcolepsy.

Xyrem Sounds Promising

There seems to be a lot of chatter over the the Daily Strength Fibromyalgia Support Groups about Xyrem being a promising new treatment for fibromyalgia. Interspersed are some accounts about side-effects and negative experiences as well. The main point being made is that fibromyalgia disrupts sleep patterns and person with fibromyalgia typically do not get enough deep sleep, which worsens pain and fatigue.

I also stumble across some older articles at ProHealth.com and the National Fibromyalgia Association websites, but nothing within the past year or so. There are some recent message board comments at ProHealth about Xyrem--to check it out click here.

I don't know that I am going to be trying Xyrem any time soon. My little trip around the Internet today has raised the issue that my medical insurance may not pay for this medication since it is not currently FDA approved to treat fbromyalgia. Right now, my neurologist is not convinced this is a good option for me. When I last saw her at the beginning of February, she planned to call my sleep specialist and discuss this and his other recommendations for me. I guess I'll find out what she decides at my next appointment in a month or so.

On a more happy note....

Today's post is brought to you by Happyneuron.com. Did you know that something as simple and easy as playing games can help the cognitive problems experienced by persons living with fibromyalgia? So why not have some fun beating fibro-fog by playing brain fitness games at Happyneuron. Their scientifically developed games stimulate your attention, language and memory skills. Try their games for free by clicking brain fitness and sign up for a risk-free 7 day trial membership.

Related articles by Zemanta

• Former date rape drug reincarnated as answer to unmet medical needs (scienceblogs.com)
• Xyrem: How Does This Make Sense? (ohmyachesandpains.info)
• Sleepless nights 'shrink your brain' (telegraph.co.uk)
• An end to the cumbesome CPAP? Provent is a prescription... (whuffie.tumblr.com)

Xyrem: How Does This Make Sense?

Image by caseywest via Flickr

O.K. so the bloom is off the rose. I switched back to my OTC cough syrup because, after two nights with the Robitussion-AC, I was starting to feel a little loopy. My liver, filled with the HCV virus, doesn't like certain medications and has a hard time getting things out of my system.

Oh well...

But that brings me to the thought I had as I was wrapped up my post from yesterday. My last comment was that I wished that my doctors were as worried about me getting a good night's sleep as they were about getting me addicted to controlled substances because maybe I'd be in a different place right now. As I wrote this, I remembered what my sleep specialist does want to give me...

Ever heard of the date-rape drug GHB? Guess what? It is also called the prescription drug Xyrem and it is being prescribed to people with fibromyalgia to help them sleep. Here is the deal, as I have learned from other persons living with fibromyalgia who have taken the drug and one of my doctors who is adamantly opposed to any of her patients taking it:

• If you take Xyrem, you need to be in bed and ready to go to sleep, because within minutes of taking it, your body will be paralyzed.
• If you get out of bed, you risk falling and injuring yourself.
• You risk having an "accident" in bed (so maybe an adult diaper is in order.)
• I personally know someone who took this medication and did not fall asleep. Instead, she lay in bed paralyzed for 4 hours, unable to move, completely awake.
• You take this medication in two nightly doses, about 4 hours apart (i.e. it only lasts for 4 hours.)
• There are side effects like nausea, although the prevailing prescribing wisdom is to have the patient take a large enough dose that they just sleep through the side effects.

After the sleep specialist first suggested this drug, I expressed my concerns to my husband about what would happen if there was an emergency in the middle of the night and I was laying in bed paralyzed from Xyrem. After all, earthquakes happen at all hours of the day and night, not to mention house fires and other crazy things. How do you call for help or get out the door (or window as the case may be) when you are unable to move?

My husband said to me, "They must only give this drug to someone who lives with another person, since you are paralyzed for 4 hours after you take it."

"No, " I replied, "I met someone who was single who was given the drug."

How does this make any sense? Give me a benzodiazepine PLEASE before you start prescribing this kind of madness. I mean, come on. Sure, Xyrem might not be habit-forming, but who in their right mind willingly submits to taking this medication?

I cannot do it. I have too many problems as it is with medication side-effects; I cannot fathom the torture it would be to lay helpless for 4 hours unable to do anything about them. I have images of Jim Morrison's final hour in my head.

I am desperate for a night of lovely, deep, restorative sleep ... but I haven't lost my mind just yet.

Related articles by Zemanta

• Pain management failing as fears of prescription drug abuse rise (scienceblog.com)
• A Pleasant Side-Effect (ohmyachesandpains.info)
• This Is The Blogosphere On Drugs, Ctd (andrewsullivan.theatlantic.com)

A Pleasant Side-Effect

Image by caseywest via Flickr

I traded emails with my family medicine doctor today and found out that the cold I have may last 2 to 3 weeks if it takes a course similar to other patients she has recently seen in the clinic. Wonderful! So today I started planning accordingly, canceling and rescheduling trips outside the house and preparing myself mentally for a prolonged period of lower energy. No flare-up of my fibromyalgia symptoms get, but it seems foolish not to expect it will happen at some point.

I've been taking the Robitussin AC that was prescribed for me yesterday. For those of you not in the know, Robitussin AC is Guaifenesin and codeine. Getting a better night's sleep is a pleasant side effect of the codeine. That got me thinking about my most recent hypothesis that maybe all I really need to help better manage my delayed phase sleep disorder is something to take before bed that could just help me fall asleep.

"They're not going to give you codeine so you can fall asleep." my husband said in response to my comment on the subject. (Did I actually say that out loud?!?) "They are more worried you'll become addicted to it. You don't want to wind up like Michael Jackson."

No, I don't want to wind up like Michael Jackson. I let the conversation go because prolonged talking worsens my hacking cough, even with the cough syrup on board. But I wanted to argue with him about the research that shows that pain patients rarely become addicted to the pain medications that they take. In the end, I guess it doesn't matter because none of the medical professionals I've seen ever offered to give me "the good stuff" to help me fall asleep and I am not stupid enough to ask and get myself labeled as "drug-seeking."

Which got me thinking that if my doctors were as worried about me getting a good night's sleep as they were about getting me addicted to controlled substances, maybe I'd be in a different place right now...

To Be Continued...

Related articles by Zemanta

• Lesson From Michael Jackson's Death: 9 Safe Ways to Help Cure Insomnia (health.usnews.com)
• How to solve 9 sleep problems (cnn.com)
• Some Observations on the State of Medical Practice in 2010 (blogs.webmd.com)

Anatomy of a Bad Day

The focus for my blog entries this week is going to be on my health, or relative lack thereof. Since today is turning out to be a "bad day" and all I can think about is how lousy I feel, it's time to "go with the flow" and share what a bad day looks like for me. As you can see from the picture to the left, a bad day is often synonymous with a bed day...

So what makes a bad day?

Any little thing that upsets my illness equilibrium: more pain, more fatigue, less sleep than usual, a cold, the flu or other infection, to much activity the day before, too much stimulation (positive or negative) the day before, a change in the weather, etc.

For example, last night I had more trouble than usual sleeping. When I finally woke up after 10 hours of more interrupted than usual sleep, I had a huge headache and my neck was extra painful and sore. This was in addition to my "normal" symptoms of all my muscles feeling achy and sore and feeling so tired, like I had not gone to bed in the first place.

Then the calculations begin: what do I have scheduled for today and do I need to cancel it? What is really wrong with me and what should I try to address the increased symptoms? You see, with chronic health problems, a headache isn't always "just a headache" and a couple of Tylenol isn't always the cure for what ails me.

Today I decided to start with two extra strength Tylenol, but after an hour the headache was still there. Not good. Now I am worried that this headache is going to be with me all day. The calculations start again: what do I have on the schedule for tomorrow? Do I need to be proactive and cancel my plans? Can I walk the dogs tonight? Can I go outside and water my garden for 15 minutes this evening? I systematically try a couple of other remedies, both over-the-counter and prescription, but after each the headache is still there. With each minute that passes and the headache is still there, the answers are supplied to my questions: cancel your plans, don't walk the dogs, the garden will have to wait for tomorrow.

So a bad day can be a headache that won't go away, and because it won't go away it makes all my symptoms worse, so that it becomes clear that the only thing I can do all day is lay on my bed and rest. In the end, what I want to do today doesn't matter. If I don't heed the warning and let everything come to a screeching halt, I risk more bad days strung one after the other. That's when a bad day becomes a flare-up and I've learned to avoid those. For me, there is no ignoring my headache and pushing past the pain so I can do what I want to do. As someone in my online Chronic Fatigue and Fibromyalgia Self-Help Group so eloquently said: Push = Pay, Pace = Play.

Here's hoping my bad day turned bed day means no headache and a better day tomorrow.