Changes for Better Sleep with Fibromyalgia

Insomnia was one of the symptoms that helped my doctor diagnose Fibromyalgia.  For some reason, we fibromites cannot seem to reach the deepest stages of sleep, and frequently, it can be difficult to get much sleep at all.  I have spent several years, including a handful of really bad months straight, waking up around 2am or so and not falling asleep for several hours, or sometimes, not falling asleep at all the entire night.  Today, thankfully, I have finally got a good routine of sleep going again.  If I can't get the quality of sleep I need, I'm at least getting the quantity, which still makes a big difference for me and my sanity.  So, for those of you going mad from insomnia, I thought I'd share what seems to be helping me catch more Z's.

Several things have changed for me, including the meds I take, as well as several of my habits and personal goals.  I try to notice correlations between how I feel and what I do or what is happening when I have questions about new or persistent symptoms that pop-up.

Journaling
I can't say enough about journaling, blogging, or at least keeping track of things quickly in a calendar or other logging medium.  When you wonder how long a symptom has been around, check your entries and eliminate the need for guessing.  If you wonder if the weather is behind an infrequent symptom, check your entries for clues.  When it's time to visit the doctor, prepare with bullet points and questions after reviewing your entries since the last visit.  Write stuff down, even if you don't think it's relevant.  Sometimes that added detail can be important later on.

Medications & Supplements

Firstly, like many of you, I am side-effect sensitive to lots of medications.  I've tried Lyrica, Cymbalta, Savella, I'd been on SSRIs and SNRIs, muscle relaxants, and Rx opioids for pain, plus several supplements, per my various doctors over the years.  I'm now happy to be OFF the meds that raised my blood pressure and body temperature and caused me more grief than relief for many months leading up to early last year.  I now only take one medication regularly: cyclobenzaprine (Flexeril).  I take it at night to allow the drowsiness help me fall asleep while it works to help relax my muscles.  I love it when I can get more than one benefit from one thing.  The muscles aren't "fixed", but it definitely helps and also helps me feel sleepy at bedtime.  I'm very glad the same dose is still effective for me, too.  On top of everything else, it's not a new drug, so I can get the generic version and not worry about ridiculous insurance copays.  (Stressing over health costs does not help one get sleep.)

Caffeine

My coffee maker sits in the pantry unless we have guests over.  I like the taste of black coffee and used to drink cup after delicious (and free) cup in the office, enjoying the warmth and aromas all day long. My husband warned me that I would become addicted.  "Pish posh," I told him.  "Caffeine doesn't do anything to me."  However, he was vindicated when he pointed out that I was getting headaches around the same time and day each weekend.  Needless to say, these headaches unnecessarily contributed to my less than restful weekends.  Once I realized my body was addicted to the caffeine, I made a conscious effort to reduce my intake of regular coffee at the office until I found a good balance.  So I now have one cup, or occasionally two cups of black regular coffee on any given day, before lunch time, and then switch to decaf, tea, or water for the rest of the day.  No more weekly headaches and sleep is much more available to me now.  I also stay hydrated better, which keeps headaches away as well.  It does make a difference after all.

Food

Another habit that have changed is my eating habits.  Over a year ago, I started eating fresh salads full of veggies, fruits, and healthy proteins and fats (beans, avocado, fish, etc.) every work day at lunch time, from a Whole Foods Market near my work.  I love fresh produce and I love knowing it's good for my body and filled with healthy fiber, water, and various nutrients to give my body a fighting chance against whatever is out of order.  I started on the salads to help me lose some weight, but optimizing my health is most important to me.

I also started mixing up smoothies with fresh and frozen fruits and vegetables after I saw a Vitamix demonstration at that Whole Foods one day.  I tasted a green smoothie that was made before my eyes with nothing more than a huge wad of spinach, banana, and some pineapple chunks (and water).  It was like green candy!  I was inspired and started pricing the fancy blenders that night.  Yikes, they are expensive!  Then I realized my blender at home (Waring Pro) has plenty of horsepower in the motor to blend up smoothies at home at no additional cost!  

I started with some simple recipes I found online (including that spinach, banana and pineapple wonder) to get the proportions right, but after a few times, I eyeballed everything and made up new recipes.  Pinterest has plenty of interesting smoothie recipes to try.  It wasn't until my husband wanted to lose some weight that he got into making smoothies every weekday morning for breakfast, and a full pitcher is enough for 2 servings, so I get whatever he makes.  I really love them!  If you like fruit, but hate the veggies you know you should eat, definitely try blending them together for a tasty and nutritious, and easy to digest meal.  You can get creative and add all sorts of fun things, like nuts, seeds, honey, dark chocolate, nut butters, squashes... anything you can blend, basically.  Experiment and find your favorites.

Physical Activity
I made a pretty easy resolution this year to make sure I exercise at least a little bit every few days.  I have been doing yoga classes weekly, but when those went away, I took what I learned from class and did my own custom routines at home.  Yoga is one of several activities I do for exercise.  Others including walking, getting on the elliptical machine, stair-climbing, and various gentle stretches and exercises for my hips and back - areas I need to keep strong and stretched to keep some of my troublesome symptoms down.  The idea is to keep moving to try to prevent those awful muscle spasms, keep my blood circulating, and of course, to keep my weight healthy.  I noticed that keeping track of my activities helps motivate me to do more.  I provide a link to my activities in this exercise focused post.

Sleeping Positions

Before Fibromyalgia came along, I always used to prefer sleeping on my side, but I recently started to notice that, although I can fall asleep on my side, I almost always wake up on my back.  I used to hate sleeping on my back, but with everything in some level of pain, it makes sense that my hips, knees, and shoulders all feel better when I'm not putting pressure on them.  So now, when I'm ready to go to sleep, I frequently settle into position on my back with my head slightly turned to one side, especially in the middle of the night, or if I'm having a particularly painful spasm at bed time.

Everyone is different, of course, and there may be things I didn't remember to list or didn't realize make a difference with sleep.  If you have other tips for better sleep for fibromites, please feel free to comment.  Sweet dreams.

Stress and Asking for Help

Work stress and physical Fibro stress.

Work is very stressful for me at the moment.  There is much to do and so many people counting on me and my team to do what seems impossible.  A coworker called me "Superman" when he felt the stress of it all.  Although it came up when he confessed that everyone relies on me to understand and explain everything we work on, only because I didn't have an answer this particular time, I am flattered by the sentiment.  I guess I already knew I was secretly super.

Anyway, back to work stress  There are just so many factors - multiple projects, tight deadlines, new problems to figure out, new people involved, an extended absence from a key colleague - that make this a very difficult  and stressful time for me at work, even if I didn't have the additional burden of my chronic health problems to top it all off.  As we all know, I'm sure, emotional stress leads to physical stress on our fragile, fibro bodies.  I had a lot of trouble sleeping last night and could not stop thinking about work.  I felt worn out and down in the dumps about my inability to keep up with the crazy workload.  I must have sounded more upset than usual, as several, concerned coworkers noticed today and offered a kind ear.  No time for venting, though.  I had to press on.

Something I did learn today, though, is that it's really okay to ask for help.

When I finally accepted help with my top priority work today, I felt a lot better.  I mean LOADS!  Until then, I had dreaded having to admit that I needed help on this project that I was entrusted to wrap up rather quickly.  I imagined the worst-case scenarios, over and over in my head.  When emotions occupy my mind, I know from past events, that my logic degrades sharply.  The fatigue from too little sleep and pains that arise from that, also fog up my brain, preventing me from thinking clearly.  Can you relate?  I heard myself answering questions incorrectly, then correcting myself incorrectly.  I ended up sounding like I was lying, but I just could not find answers to the questions being asked.  It's a mess.

During the collaborative process, however, I felt my stressful feelings were validated because it was obvious that others realized just how daunting my task really is.  And, of course, the joint effort was also very helpful in getting me going in the right direction. We made progress figuring some of the challenges out together and forging a more specific plan for me.  After that, I was much better able to focus on the task at hand, rather than being distracted by the downward spiral of worrying and physical symptom flare-up.

I know it's difficult for some of us Type-A personalities to admit we need help, much less actually ASK for help from others when we really need it.  However, it's probably worth the risk of asking if you feel stuck in that ugly spiral.  I was lucky that help was being foisted upon me, despite my unfounded resistance.

I will work on recognizing the signs before it's too late, and remind myself that it's okay to ask for help.  Even Superman can't always do it alone.  That's why he's got Super Friends to help him out. ;)

Great Overview Video of FMS

Today I came across a great video.  It's a doctor giving a presentation about Fibromyalgia.  He describes what it is, what it isn't, how it's diagnosed, how it's treated, what patients experience, how Fibromyalgia pain has been studied and measured to be different than in other people.  There are detailed descriptions of many topics and lots of tips on treatment (especially non-drug treatments) and I even learned a few things.  At the very least, my foggy brain was reminded of things I'd forgotten I knew.

As I watched, I found this video to be a useful educational tool for both Fibromyalgia patients and their loved ones alike.  Direct people who are confused about FMS to this video, especially to certain areas relevant to the questions that perhaps you cannot find the right words to explain.  It's an hour and a half long, so if they really want to know, they'll watch.  That said, you may need to take breaks and watch it in manageable chunks.  I also suggest keeping a pad and pen nearby, for any notes you may want to jot down for yourself. There is also a question-and-answer segment at the end as well with questions from the audience. 

I've been diagnosed for over four years now, and have been experiencing chronic pain for over five years.  Having read and learned so much since then about Fibromyalgia, I must say that watching this overview was a great review that kind of puts all the pieces together nicely. 

I realize, though, that not all aspects of the condition are mentioned in this presentation.  For instance, pacing and stress are briefly mentioned, but not given as much time as they might deserve, if relating the portion of time in the video vs. importance in a fibromite's world.  He also doesn't go into great detail about every last symptom that might be grouped into the syndrome, though he picks several of the big ones.  This is a pretty detailed overview of the condition with what we know about it now.   Hopefully we will learn more in the coming years about the cause and better ways to treat or (dare to dream) cure it.

I hope you enjoy this video and learn something from it.  Share as needed.  I also hope that friends and family members of Fibromyalgia patients, and perhaps others in the medical community or general population, will watch at least some portion of this video and try to understand this confounding syndrome which, even Dr. Gross admits, doesn't really belong in any particular medical category because it affects everything.

Fibromyalgia: It's Real It's Manageable What You Can Do

Eye Twitch; Flexeril and Symptom Update

Since yesterday morning, my left, upper eyelid has been twitching intermittently throughout the day.  It's nothing I haven't experienced before, and it's pretty mild, but it's still happening right now, and it makes me self-conscious when I'm talking to people, though it's not a big deal if they see it.  Everyone's had this one time or another.  I just wonder how long this stint is going to last.

According to several web pages about this, I need to rest and relax more.  (Unwindsday, here I come!)  I have been getting much better sleep since getting off Savella, though I've had some odd back-of-the-neck pains that wake me during the night.  It's a stiffness kind of pain that restricts my movement and I have a hard time getting comfortable.  I don't know what that's about.  It's a bit scary at the time.  Everything seems more scary in the middle of the night for some reason.  Maybe my brain is not ready to think properly then.

I am going to visit my new rheumatologist this Thursday to find out all my lab test results (12 tests) and see if we can learn anything from them about why I'm experiencing Fibromyalgia.  I'm also going to let her know how I'm doing on the new drug she prescribed, Cycolbenzaprine (generic for Flexeril).

With the new medicine, things started out a bit weird - the first night I used it, I woke up about an hour after bedtime, wide awake, and was just this side of believing that I might realistically die that night.  I have no idea why.  Perhaps my heart was racing or something, but I felt somewhat out of control, different.  I lay there awake, pondering the impacts of death.  It was very weird and it's stupid to think about now, after the fact, but I did really believe it.  Finally, after some time, I convinced myself that perhaps this flavor of crazy was brought to me by my change in meds, and that the side effect may be something mental.  I fell asleep and was fine in the morning.  I lived to laugh about it.

Mostly I think the new drug is fine, it just made me feel a little anxious or something like that the first few days.  I've been having headaches, too, almost daily for several days now, but I'm not certain it's the drug.  It could be due to hormonal, since it's period time for me.

I've been experiencing some nerve pains recently, which tend to occur somewhat less frequently, and yesterday I felt a little puffy in the face, which is not a usual thing for me.  That could be allergies affecting me, though, since my throat is a little hoarse today and I started sneezing and sniffling a bit yesterday.  My allergies are LOTS better this year, though, compared to others, thanks to my years of desensitization injections.  Finally getting the payoff for all that!

IBS is behaving nicely lately and I am able to feel kind of human overall these days.  (That's the real test for how I'm doing.)  It's been a couple weeks now and I am okay, for the most part.  Various symptoms come and go, as usual, but at least I'm no longer taking sleeping meds AND a muscle relaxant - just the one drug now.

The warm weather is helping me to move around more.  I'm taking more walks and getting more exercise, but I'm still having a hard time in between bouts of energy, when I feel worn out and confused.  Hopefully the ups and downs will start evening out soon.  I am having trouble getting the pacing right and am still overdoing when I am able to.  :P  I need to update my WRAP, too, since so much has changed since I last updated it.  I'll post a link to that once it's been revised.

I'm Weaning Off Savella

With two calls into my fibro doctor and still no response, I've made the decision to wean off Savella.  I've also decided to fire my fibro doctor and find a different one to take care of me.  If you remember how my start with Savella went, you'll see why I'm not expecting much from him this time around.  I'm through with his nonsense.

After doing some drug interaction research after Monday's appointment, I learned that the Sinex nasal decongestant spray I've recently been taking doesn't play well with Savella.  According to drugs.com, there is a "moderately clinically significantly" interaction between these two drugs.  Here's the exact interaction wording:

Be careful with SNRIs and other drugs that can affect blood pressure and heart function!

As you can see above, there is a serious risk of blood pressure problems and pulse and warrants getting off Savella and SNRIs altogether, which is my current plan.  Again, I have learned all of this without any help from my fibro doctor.  My fibro doctor was the one who told me to try Sinex for the nasal congestion I mentioned during my last appointment.  What's more, he didn't tell me that it should not be used for more than just a few days - this I learned from my primary care doctor on Monday.  I'd been taking it for a couple of weeks.  This is the last straw.  I can't trust him.

Knowing all this now, it is not much of a surprise to me that I am feeling some relief after having stopped taking Sinex since Monday's appointment, and having skipped my first dose of Savella last night.  My head feels much better today and I actually slept for a change!

Thanks to others who have had to wean off SNRIs and shared the experience online, I have developed a month-long plan to wean off Savella.

The full regular dose of Savella is one 50mg tablet, twice a day, resulting in a 100mg per day dosage.  Starting last night, I will eliminate my bedtime tablet each day for two weeks, resulting in a 50mg per day dosage.  Then I will eliminate one morning dose every two days for another two weeks, resulting in a 25mg per two-day dosage.  It's not perfect, but I'm hesitant about cutting the pills in half right now, as I have not been able to confirm that it's a safe thing to do.  One person reported a worsening of heart problems after taking a cut Savella pill and warned against it.  I will continue to look into this as necessary and watch for those odd withdrawal symptoms.  If withdrawal (or "discontinuation") symptoms become problematic, I will try increasing dosage a bit to reach a happy medium as my body adjusts.  (If you can point me to something about this on the web, please leave me a comment about it!)

With this plan worked out and symptoms seeming to calm down a bit now, I feel a bit more in control of my body's chaotic messages.  This is, of course, not to mention all the "usual" fibro symptoms and pains that I can't escape.  My hope is that, with fewer side effects complicating things, my fibro might be easier to manage.

Things are still stressful, though, because there is a lot going on at work as well as at home.  Lots of projects are coming fast and furious at work because the market is changing and it requires action.  As a member of my company's IT team, I get to be affected by all of these sudden and very urgent changes, even when they turn out to be reversed later due to new information.  It's already happened and it will happen again.  I just need to deal with that.  It's going to be a long year.

A family member's health, though, is also suddenly very poor, but we aren't exactly sure of the diagnosis yet.  He has his own chronic health problems, so the implications of his new symptoms are serious and worrisome.  I am doing my best to stay strong and take care of his needs while my health seems to stabilize, though I also don't know how my body will handle being off SNRIs long-term.

My schedule and fibro doesn't allow me to do much of what needs to be done at home, much less handle all these additional challenges.  I don't have much choice, though, but to try to keep calm and carry on, so that is what I must do.

Feeling a Bit Better

Feeling Lame Update:

As you may have read in my previous post, yesterday, I was a hot mess.  I'm not skipping along merrily just yet today, but I did manage to get some sleep last night.  Although my back is still hurting quite a bit, and I had more bloody nose mess in the morning, I did not have any more bleeding for the rest of the day (amazingly), and I did not have asthma issues at work today.

I may be headed for better days soon.  I've been making a real effort to eat healthier and have been managing to get A's in Calorie Camp because of it, so hopefully that effort is helping something to go right.  Not sure what made it go so wrong yesterday, but such is the life of a fibromite - always unpredictable.  Oh, bonus: I lost 3 pounds as of my weigh in this morning.  Yay me! 

I'm going to continue hoping for better days now.  Thanks for reading.  I hope you are having a good day.

Feeling Lame

Sorry to be the bearer of bad news, yet again, but despite my best efforts, my sleep has been ridiculously scant and superficial for the past month, even when I use the new ear plugs.  I still like them for tuning out the noise, but apparently noise is not the only trigger that wakes me. 

For instance, the other night, I slept and dreamt, but woke up suddenly in the middle - well, at the apparent sudden END, I guess - of each dream, for no apparent reason.  No noise, no gasping for air, no falling or startle dream, nothing.  One second, in a creative story of my mind, next minute wide, fucking awake.  This must have happened about a hundred times that night. 

Each night is different, too.  Last night, for instance, I don't remember dreaming, but I slept for a few hours before my brain decided I shouldn't sleep for the rest of the night.  I woke up around 3am and finally got up after 4am to address some of the things popping into my mind.  I'm tired as all hell at the moment.  In fact, I left work early today because I couldn't function.  It's unseasonably warm today (60 degrees F for January in Chicagoland is very unusual) and that may or may not have anything to do with the fact that today my asthma has been the worst it's been in months, that I can recall.  I have been coughing and trying to breathe for hours, then noticed I was feeling faint, probably from the lack of oxygen getting to my brain. 

On top of that my face flushed up and felt like it was burning up (this is still about a daily occurrence) AND my nose started bleeding, right there in the office (another daily occurrence).  It was too much and I was starting to sense microsleeps occurring due to my sleep deficit.  I carefully drove home and I'm about to try and nap some of this crap away.  Savella is already making my heart beat way too fast and hard (100+ beats per minute at rest is not normal) but the rescue inhaler also makes me shakey and screw it up even more. 

In addition to the above, my lower back is having spasms for the past few days, despite my increased muscle relaxants, stretching, and a great massage treatment just yesterday.  However, the pain from that pales next to the nerve pain jolts I've been getting in the back of my right thigh for the past several days.  It's maddeningly sudden and severe every time. It makes me jump and/or gasp involuntarily, and I'm pretty good and not bringing attention to my pains in front of others.  I've been calling this sciatica, but really I don't know what it is.  I've been told my piriformis muscle is likely impinging on it, so I stretch when it occurs, to try to prevent further jolts.  It's difficult to say whether anything helps this - as it's so intermittent.  I get a similar pain in my forearm as well, and that's been acting up lately, too.

I wanted to write this all down while I'm feeling it so I can give my future self an accurate description of what went on today.  This is about all I can handle at the moment.  Stay tuned for an update of how great I'm feeling later (hopefully).  I will have better days.  I will have better days.  I will have better days...

I Don't Mind the Snormy Nights Anymore

The last few weeks have been interesting for me.  Don and I took the last two weeks of the year off work.  The first week, we traveled to Michigan for a short beercation, visiting Dark Horse, Arcadia Ales, and Three Floyds in Indiana, while on the way back to Illinois.  It was a great time, but I started having some trouble sleeping.

The week after that, I caught some sort of mild cold and continued to have increasingly more difficulty getting and staying asleep each night.

Just this week, a day after returning to work, I came down with some sort of stomach virus that had me weak, in pain, and exhausted from being awake for several hours each night.

What's worse, Don is a snorer.  There is a running joke at our house that, whenever I hear him snoring a lot during the previous night, the next day I complain that last night was very "snormy".

He seems to sleep pretty well, despite his snoring, but I certainly don't, especially when flare ups or other things are keeping me awake.  As a fibromite, I am never fully rested, even if I manage to stay asleep all night, as there is something in my body that is unbalanced and prevents me from reaching the deepest stages of sleep.  It is a common symptom of Fibromyalgia and I definitely suffer from it.

The worst part of Don's snoring, as I realized while listening to and studied the sound for many hours on end very recently, is that it's not a nice, rhythmic pattern of sound that I can get used to hearing and still drift off to sleep despite the volume.  Rather, the sounds vary in type, volume, and timing.  At times, I'd manage to drift into that pre-sleep stage, only to be startled back awake by that all too familiar chainsaw in the bed, next to me.  I must admit, there were times when I felt so frustrated I almost wanted to smother him with my pillow... but I didn't.  I cannot punish him for something he cannot help or even realize he is doing.  He's sound asleep, dreaming.  He might as well get a good night's rest, even if I can't.

Anyway, in the mornings, after Don was up for work, I mentioned my lack of sleep and my frustration with the snorminess.  He wanted to help, but wasn't sure what he could do.  He even offered to try those BreatheRight nasal strips that are supposed to help reduce snoring, but he has his own health problems and I didn't want to hurt his fragile skin with the adhesive.  I asked for ear plugs.

My little foam ear plugs, after several uses

Since I saw Breakfast at Tiffany's a couple weeks ago and saw Holly's fancy little tasseled ear plugs, I wondered if I should be sleeping with ear plugs, too.  Not tasseled ones, of course - I'd never be able to sleep comfortably with those.  But I knew we had foam ear plugs in the house, because we have gone target shooting and have proper ear protection for that activity.  So, Don dug them up for me and I tried them several nights ago, for the first time (for sleep).

The nice thing about these ear plugs is that they are like memory foam: they are small, and soft.  You roll the little cylinders into skinny little things that you can quickly cram into your ears, then they expand back as much as they can to fill your ear canal and block as much sound as they can.   They don't block it all - in fact, I can still hear the snores through them, but they definitely dampen a lot of the noise, so it's a lot easier to ignore.  They also block out all those little bump-in-the-night noises that can wake a light sleeper.

When I first put them in, I get to hear the ringing in my head a bit louder for a while, but I seem to get used to it soon enough and then drift off to slumber pretty easily.  I have used them now for three nights and I have slept WELL for a change!  I only remember waking up maybe once each night, to turn over and get comfortable.  I fell back asleep quickly and slept until a reasonable morning hour.  These little things have made a huge difference in my ability to sleep, stay asleep, and all the cascading symptoms that occur when I don't get enough z's.

If you're a light sleeper who gets awakened by any little noise or slight disturbance during the night, or if you are lucky enough to have a snoring bed mate and it's affecting your sleep, these are cheap and comfortable and worth a try.  Of course, if you have someone who depends on you to wake up at night, like a baby or other dependent, you may not want to reduce your chances of hearing them, but otherwise, go for it!

Here is a quick start to finding some foam ear plugs online, but you can probably find at least one brand at your local general store as well.  The larger packs might be better worth the price or/and shipping, since I'm sure they can only be reused so many times before they break down and get nasty from ear wax and sweat and stuff.  Invest in a few.

I hope this helps someone out there.  I wish I'd tried this earlier!

Stressing and Pacing with FMS

My last post showed you how I look when my face gets all hot and red. I've been noticing that's died down a bit now, thankfully, though I still notice hot flushes. Actually, maybe I'm just getting used to it and noticing it less, rather than the actual occurrences being reduced. At any rate, I don't always check how red I look now. I just wait it out and go about my business. I'm usually at work when it happens, so I have plenty of distractions.

Speaking of work (well, writing of work, I guess), it's been quite ridiculous with all the meetings, tight deadlines, and lots of work to do and no time to be at my desk to actually do it because of all the damned meetings! I am working on a new, very important project that is expected to be delivered in a few months and things are moving quickly on it. I guess that would be fine if it weren't for the other, usual work things that come up, and if I didn't have to deal with chronic health issues - all at the same time. In addition, there are other things going on in my life - loved ones with health issues and strained family relationships - that are adding to the stress pile.

The net effect of all this stress is that my body has been nagging me about taking a break. Meanwhile, I've been asking it to please wait for a better time to argue with me. Well, I give up. Today's the day. Okay, body? After I post this blog entry, I'm going to bed to rest. All day! That's going to have to do. I have too much going on to spare more than a day at a time. I also don't get paid for this time off, so I don't want financial stresses added to my pile. It's a bit of a catch-22 that way. Anyway, I'm willing to compromise with this day and see how long it gets me. Next week's work schedule is nuts all over again, so I'll have to be ready. If I'm not, there's going to have to be some rescheduling, I guess. It's nothing I haven't done before, but I really hate the feeling. I guess I need to get over that.

It's like I keep telling my friends: I can't help anyone else until I help myself. Remember the oxygen masks on the airplane. They instruct adults to put on their own masks first, then help their kids or others. If you faint, you can't help anyone. I try to picture that during times like this. I need to listen to my own advice more often. I'm still learning how to live with this fibrobeast.

Switching to Savella - Day 7

Despite more violent thunderstorms last night and remaining awake since the 3am tornado siren, I felt like this morning was much better, symptom-wise, than yesterday. I was able to sleep some of the night without covers or without having to completely burrito myself in all three layers of blankets, which was a great improvement for me with the temperature stuff. Then I also felt less dizzy and brain zappy, too, even after being up for hours and moving around a bit.

I did some of my Baby Steps exercises and when Don got up, we walked around the block in our rain jackets and had a little banana bread for breakfast. I went back to bed and napped for several hours and felt I was able to have beer again! That's a big improvement! We went to one of our favorite places - Bavarian Lodge in Lisle, IL - and enjoyed a couple of interesting new Belgians on tap there. I was also very good about ordering a salad, though most of the food is deliciously fried and German, because I'm still working on getting some of this weight off.

I'm looking forward to taking my first top dose pill of Savella tomorrow morning, and then heading off to meet up with a fellow fibromite friend of mine for brunch.

I don't want to jinx anything right now, but I had a good day today and felt almost human again. After several days of being way off that mark, this is a huge relief for me. I'm hoping the withdrawal symptoms from Pristiq are behind me and that Savella will improve my Fibromyalgia symptoms, as my doctor and I are hoping.

Oh, something I'd forgotten to mention in yesterday's post was that I was dealing with a little sciatica attack when I went to bed early on Thursday night. It was in my worse leg -the right - and always feels like sudden lightning strikes inside the back of my leg. Not fun, but at least it only lasted a few minutes.

Also, no word, of course, from my doctor. He's definitely going to get an earful at my next appointment about all of this.

Switching to Savella - Day 5

I've been working from home again today and I noticed the brain zaps are getting less frequent, perhaps because I've been at the computer most of the day. I'll take it, whatever the reason. My abdominal issues are still there on a low level, too, but I've been managing and trying not to listen to the gurgles or think about it too much.

Last night I noticed I felt this odd kind of restless, unsettled, discomfort feeling in my body. At first I couldn't find a comfortable position for my feet while watching TV, but then I realized I was trying to shake off some sort of vague feeling I couldn't name. I don't know if this is related to the drugs at all, but I'm noting it anyway because it's weird. I felt like I wanted to get away and go to bed, but when I did, the feeling followed me there, too. I am still having some of this now. I may need to try to move around more to distract my body.

I am getting better at handling the temperature issues, I think. Last night I was baking up some banana bread muffins even though the weather this week has been near the 100 degree mark with all kinds of cautions about it and everything. I managed to make the muffins and make some salad for dinner, too. I was tired, but I felt useful, which was good for my mental state.

I also went to bed without my jammy pants, though I still needed the shirt and socks. Plus I was okay with not being buried in the blanket. That's an improvement. I ended up waking up at 3am, though, with a headache and inability to get comfortable, so I didn't get much sleep. It may just be my normal insomnia combined with odd sleeping temperatures and other factors, like the headache and bellyache.  I got up at 4am when I realized sleep wouldn't be back so my husband could get some sleep.

The good news is that I managed to shower AND get dressed in real clothes today - not just swaddling clothes, like for the past few days. I even brushed and did my hair! It's almost like I'm a real person again. 

Then I went outside, picked up the mail, and looked around our yard a bit. Our poor plants are all so tired from the drought and heat, even though they are hardy natives, many of them prairie plants. Still, there was life to be found, though, while bumblebees, dragonflies, damselflies, cicadas, birds, and even baby bunnies all went about their business collecting food and doing whatever else they need to do in our little yard. After meandering our path for few minutes, I went back inside to get back to work. (The release looks like it might go well.)

I have not yet heard anything back from my doctor. :P

If all goes well tonight and tomorrow morning, I just might be able to drive into the office for work tomorrow. Won't that be something! No promises yet, though. There's no telling what's around the next corner when it comes to this kind of stuff. Stay tuned...

Weird Weather and Possible Restless Legs Syndrome (RLS)

So, first a bit of good news... It gets hard to remember to notice the little victories sometimes. That cough I had that caused me some weird pain in my left side is finally done and gone. Also, I have backed off the Baby Steps quite a bit the last week or so (okay, that's kind of bad-ish news) but my tailbone is feeling much better, too. What's funny about these symptoms is that they are so very noticeable and bothersome when they occur, but when they finally leave, they just quietly sneak off and don't say good-bye. I noticed their absence much later than when it actually occurred. Good riddance, anyway!

Here's the latest bad news... It seems the weather has been making my symptoms flare up. We've been stuck in a weird low pressure system for the past few weeks, which has resulted in cold and mostly rainy weather. We've had hail and even a couple snowfalls in the past week! The snow arrived only about a week after we had 80+ degree weather here in Chicagoland. With the wacky weather I noticed more headaches, nausea, more overall pain and achiness, and a new kind of pain that seems to have settled in my legs and feet. I've been calling it bone pain. To make matters worse, I've also been dealing with added stress from work and stuff. Things at work are a bit on the crazy side, as we get closer to a major project deadline. I'm doing what I can to stay ahead of my own work, but I can tell my team is feeling stressed from problems and snags coming up this late and the probability of having to work longer hours to get everything done on time.

Now the neutral news... I had an appointment with my fibro doctor last Wednesday. Due to my fibro fog, I forgot to bring the notes I always bring with me, but I made do with a portable pad and pen and whatever notes I could remember to discuss. The appointment was for 5:40pm and I was on time; the doctor was not. I ended up waiting over an hour before I could have my appointment. (The explanation was a new patient and a thrown off schedule. I am switching back to morning appointments after this.) Anyway, while I was waiting as patiently as I could, I noticed I could not bear to sit still due to the "bone pain" in my legs. I moved them around and tried changing my posture periodically to read and distract myself, but it was no use. After about 45 minutes, I couldn't stand to sit (hehe) any longer and started pacing the waiting area. It's a small area and there were several other patients there, so I hesitated to start pacing and make them feel uncomfortable, but then I realized: it's a pain clinic! Certainly they would understand. Pacing helped my legs, even though it was a tight area and felt a little weird.

When it was finally my turn, the doctor and I discussed the weather affecting my symptoms, my change in medications, and, as usual, the doctor asked me about my sleep. He asked me if I feel refreshed in the mornings, or tired. I blurted out "tired" as if he should have known, before I realized how rude it must have sounded. Since I'd already apologized for having forgotten my notes and mentioned my retarded brain functioning, he was formulating a hypothesis and continued asking me questions. He asked specifically about whether I am moving my legs at night. I wasn't sure, but didn't think so. He asked if my husband complains that I keep him up with my movements at night. I know my restlessness has impaired his sleep quality, which is why I try to leave the room if I'm too awake to fall back asleep (like now). But he's also a very sound sleeper most of the time, so perhaps he's not noticing what I'm doing in my sleep because he's asleep himself. Then, I was surprised to hear the doctor tell me that he suggested I undergo a sleep study to see if I have Restless Legs Syndrome (RLS), adding that RLS is very treatable and could help me get better sleep, and in turn, bring back some of my thinking skills and chase away daytime fatigue.

A sleep study? Me? I've never thought of doing one. Would I be able to sleep at all with all the strange hookups and people watching? Then there was the RLS. I never thought I'd had this, though I knew it was common for fibromites to have. I do know someone who has been diagnosed and is being treated for RLS, but I always thought I'd know if I had it. Now that I've had a day or so to chew on this possibility, I am noticing the aches in my legs cause me to move my legs around quite a bit. As the doctor explained, RLS also entails shifting the legs around to try to find a comfortable position for them, but not succeeding. I thought back and realized that I have a hard time with my legs while watching TV in the evenings as well as at work at my desk. Then there was the incident right before the appointment, which I shared with him. I guess RLS is much more likely than I had realized.

As I type here, I am up due to my waking up and being unable to find a comfortable position to relax and fall asleep. I woke up shortly after 3am and noticed my legs were aching and I was stretching my ankles and trying to chase the pain off with movements. Then I decided I wasn't going to fall asleep any time soon and didn't want to keep disturbing Don's sleep, so I snuck off to do something more productive. I suppose it would be nice if I could at least effectively treat this pain/discomfort, even if that means adding yet another drug to my regimen. As a fibromite, it's rare to have confidence that any drug treatment is going to be effective, so hearing that RLS treatments are helping people is very promising. I won't pin my hopes and dreams on it (yet), but it's a ray of hope for some improvement. I'll take that.

Fright Morning

I just survived a harrowing ordeal.  It has nothing to do with Halloween or the various seasonal pranks or visions of ghosts or demons or anything like that.  I just experienced an awful episode of sleep paralysis.


The Real World:
Here's what happened.  I got up just before 6am today to go to the bathroom.  This is not unusual for me, but getting up does frequently interrupt some of the best possible sleep I get, which occurs in the morning hours.  This is why I tend to get up for work around 8am and usually still feel a bit like a zombie for several hours while my stiff muscles thaw out a bit.  

Anyway, after the pee break, I got back into bed and tried to get comfortable.  It has been raining all night, but softly.  The wind, however, was still howling wildly outside in frequent gusts.  Today is also garbage day in my neighborhood, so the trucks' brakes can be heard in the distance.  

I woke Don up with my pee break, so he decided to start his day.  After a half-hour or so, I finally fell into a very light sleep, waking up periodically with Don's moving around the house and showering and such.  At 7:30, Don gave me a kiss good-bye and went off to work.


My World:
Sometime after the kiss, I fell asleep again, knowing that I only had a few minutes before having to get up for work myself.  I dreamt some usual nonsense, then "awoke" to realize I was in bed, looking at the door, the ceiling, my own outstretched arm.  

I tried to move but noticed that I was not only numb, but tingling.  My ears picked up sounds that I knew couldn't be Don's voice, but somehow sounded a bit like it - like he was talking to someone on the phone, from another room.  I tried to call out to him to help me and heard myself struggle to get sounds out.  I recognized this as sleep paralysis, but felt unable to shake free of it.  I fought and fought to move my arm, only to see it lying there in its original position, despite my firm belief that I had managed to move it just a bit.  My ears screamed with tinnitus and I felt the cold numbness and tingling in my entire body.  I looked around the room, seeing changing spots on the walls, shapes that weren't what they should be, and knew these were signs that I was not fully conscious.  Nonetheless, I fought and fought to move and scream.  

The strong winds worried me, as I thought our patio furniture might break a window.   I worried that I would not wake up in time to go to work or at least notify someone that I'd be late.  I worried that I might choke myself on a heating pad cord that was not even in the bed, but that I "saw" and "grabbed" with my hand.  I tried using the smell of a hallucinated lotion bottle to wake me up.  I tried waiting patiently for the paralysis to end while my ears and eyes experienced things I knew to be false.  I kept drifting off and coming back into what I thought was consciousness, only to realize each time that I was still trapped in my own corpse-like body .  

My patience wore out after a few times and I struggled again, determined to break through the paralysis and get myself out of bed, to no avail.  This went on for what seemed like ages, but could not have been more than an hour, as my release finally arrived at 8:20am.  There was no mistaking this for paralysis.  The tinnitus was gone, the tingling, cold numbness was gone, and the room looked a lot less surprising.  It was almost like the end of a violent storm.  I was finally awake.  What a relief!  If there was a way to kiss the ground of consciousness, I am going to be doing that soon.




Have you dealt with episodes like this?  What do you think is the cause of it?  I was sleeping on my back at the time.  The amount and quality of my sleep varies from night to night, and I have plenty of stress with all the pains, fatigue, responsibilities at work and home, weight gain struggles, and new, yet-undiagnosed symptoms for which I will soon have more "fun" tests to go through.  I've had a concussion, too.  I'm also on plenty of prescriptions to try to treat my many symptoms of Fibromyalgia.  

Some or all of these could be contributing to this.  Or it could just be a fluke thing.  Whatever it is, I'm not looking forward to the next one.

Some Quiet Time

Here again I lie in bed
While countless thoughts race through my head.
Dare I look to check the time?
Of course I do - 1:39.

Spouse and I retired by ten,
As always, I took my Ambien,
Yet he's the one who's sound asleep,
While I avoid making a peep.

I notice silence; no birds are singing,
Though, of course, my ears are ringing.
I'm also hungry at this odd hour.
Should I have a snack, or rely on will power?

Maybe if I close my eyes
Husband's snores will hypnotize.
I try it for a little bit,
But my thoughts return to... a biscuit.

No! I must not give up hope!
It's just some quiet time. I'll cope.
I turn over, snuggle in,
Take a breath, and even grin.

Yes, I will be dreaming soon,
Not thinking thoughts about the moon,
Or wondering how my level of pain
Will soar tomorrow, thanks to my brain.

Not reprioritizing stuff
Because I won't be up to snuff.
No, I won't worry 'bout tomorrow,
Whether there'll be "spoons" to borrow.

I'll just return to dreaming bliss,
Perhaps I won't remember this.
I check the clock. Two hours have passed.
I can't believe it. That went fast!

But this is how it always goes.
Fibromyalgia's insomnia blows.
Perhaps, someday, they'll find a cure.
For now, I guess I must endure...