More Smiles and Some Food

Despite the stress of a bathroom remodel that is taking for freakin' EVER, I am still doing remarkably well, considering how awful I was just a few months back.  I am very grateful for the break from a lot of the pain I'd gotten used to just being there and changing every so often, just to keep reminding me that it's there.  If it wasn't for the fatigue part and some minor IBS issues that come and go, my persisting Delayed Pressure Hives on my damned feet, and the pains that just come on suddenly here and there, I'd almost consider this as some sort of "remission" from Fibro.  I'm not completely pain-free, but knowing how bad it can be, this is pretty easy to handle... and I'll take it.

I've been celebrating my feeling better with baking projects and more smiling.  I whipped up another pumpkin pie a few weeks back, from the last of our local farm's sweet little pie pumpkins.  

Benia's Pumpkin Pie

(We froze the pumpkin puree after cooking it in the oven.)  It's my fourth pie ever and I think I finally have it down, give or take some variability due to the moisture factor of the puree.  (I judge it by eye.)  If it's too watery, the pie just has a more pudding consistency to it in the middle.  It's still delicious and a fine way to end your day or start it.  Who knew vitamin A could be so tasty!  If you'd like the recipe I use, here it is.  I modified it slightly.  I don't bother removing the last egg's yolk, and I substituted the spices for 1.5 tsp. of a cheap, pre-packaged, pumpkin pie spice mix I picked up last fall that works great.  I just skipped the cloves.  (Bleh!)

After the pie was gone, I decided to make Oatmeal Craisin Cookies.  I have a big box of generic Quick Oats that I usually keep at my work desk for a quick lunch, in case I'm crunched for time and hungry.  I brought it home and made a batch of the cookies using the recipe on the box and substituting the raisins for dried cranberries (craisins) which we always keep for snacks or adding to breakfast.  They went fast and were tasty. 

Oatmeal Craisin Cookies... YUM!

This is the second time I've made the cookies and I notice that it's a bit messy to mix up all the thick ingredients.  On top of that, my largest mixing bowl is not a mixing bowl at all.  It's a cheap, plastic chip bowl from the dollar store and it's flimsy.  I used it for this batch, but I decided I needed to get myself a nice, durable, glass mixing bowl that is large enough for the job.  I noticed the chip bowl's capacity was still on the sticker on the bottom: 3.5 quarts, so I set out to find something either that size or larger, but made of durable, clear glass. 

I decided on glass because I don't like the possibility of plastic bits getting scraped into the food by the mixer blades, plus I wanted something nice that would last and could be microwaved if need be, and is dishwasher safe.  I prefer clear glass because it makes mixing easier when you can see where things are sticking to the sides and need scraping. 

I came upon a great little store designed for parents who want to avoid exposing their kids to toxins.  (Shouldn't that be everyone?)  It's called Mighty Nest.  They sell a lot of baby stuff and kid toys, but also kitchen and cooking items.  And this online store is where I'd finally found the perfect mixing bowl and another one just a bit smaller that matches it, too.  They are great!  They are just what I needed and are shaped to perfectly fit into my cupboards, too.  They are located in Evanston, IL, just a few towns away, too, so I didn't wait long for them to arrive.  Bonus!  I wonder what I'll whip up next.

Finally now that we've gone through all the sweet stuff, here's a little healthy stuff.  Remember Calorie Camp?  I'm still logging foods and tracking my calories and weight there.  The more I log, the more information I have to learn how to improve my nutrition and be healthier.  As I started looking at my analysis and seeing a pattern - too little fiber and protein, too much sugar.  So I got proactive about it.  On workdays, for lunch, I have been having big, healthy salads from the nearby Whole Foods Market.  Why not?  Making salad at home is nice, but takes a lot of effort (I still have trouble with the prep sometimes) and the food doesn't long.  The way Don and I shop, we'll have produce for a couple days, then nothing for two weeks or so until we go grocery shopping again.  It just wasn't working out. 

My big salad from Whole Foods Market.  I added a baby octopus to this one for fun and protein.  Isn't it cute?

So one day, I went to the salad bar at Whole Foods for lunch and picked out some great salad greens with spinach, bell peppers, carrots, mushrooms, tomatoes, broccoli, red quinoa, chickpeas, hard boiled egg, and a little Parmesan cheese, topped it off with balsamic vinaigrette, and enjoyed a POUND of food for under 500 calories.  If I want to go out and eat less healthy stuff for dinner,  at least I know I got my veggies and nutrients in for the day.  Now I go every day and am getting a more balanced diet more frequently.  It works out great and is worth the $7.99 per pound I'm paying to not have to go grocery shopping, chop stuff up, and pack it up for work every day.  I know the food is fresh, there's plenty of variety available, and I can decide how much of what I need at the moment, when I am feeling it.  Win-win-win! 

Oh and I bring my own reusable bag and keep a real (non-disposable) fork at work so I don't have to make so much trash.  The box is not reusable, but I like to bring the salad back to my desk and eat it most days, so I grab a paper box from the stack and use that.  At least it's compostable.  I also keep an old cloth napkin in my desk so I don't use so much paper.  I just swap it out and wash it now and then.  (It's not that hard to be green.  Every bit helps.)

So I'm doing okay, enjoying life and food and trying to stay positive about my world.  I'm hoping you are smiling.

Feeling Pretty Good

Just wanted to post quickly that I've been sleeping much better lately, and have not been experiencing so much pain as my previous "usual" most days.  I've had twitches and headaches and the odd pains here and there (like what's with this TMJ soreness in the right side today and yesterday?), and still get fatigued somewhat easily, but with some pacing and caution, I seem to be doing okay at the moment.  It's hard to remember to notice the days when I'm not dealing with 17 strange pains or other symptoms, but I do believe that it's important to stop and appreciate the absence of symptoms, whichever ones they may be.

Today, I was reminded of the back pain I would typically experience during any given day when I had a sudden, sharp, muscle spasm today at work.  It made me realize that I'd been working more days, and have been feeling more "human" recently.  By that I mean that I can smile, I can walk at a reasonable pace most of the time, and I can talk to people about various topics without being constantly distracted by various pains and discomfort and my next move to try to relieve it.  As a caution, I took a half-tablet of a muscle relaxant and moved around a little.  It seems to have helped, but I feel it wanting to stage a coup.  My awareness of it lurking there will remind me to continue move around a little more than usual to prevent it from flaring up, hopefully.  I've learned so much from my years of dealing with these random symptoms!

This is reminding me, once again, of a task I've been putting off for a while now: update my WRAP.  My WRAP is my "Wellness Recovery Action Plan" and in it, I have details about how to proceed, when my fibro-fogged brain forgets, when I recognize a trigger for a flare-up, a mild flare-up, a major flare-up, and everything in between.  What has worked for me and what hasn't?  This is my reference for me and anyone in my household who may need help figuring out what to do when things happen to a chronic pain sufferer like myself.  It's good to have one just for yourself, too.  But definitely keep it in sight, or it will escape you in moments of need.  Take it from me.  I have forgotten, plenty of times, what I should do next during times of crisis.

Once I make the updates, I'll be sure to share with you all so you can create your own reference.  Having to update the information feels like a kind of a graduation of sorts.  I had limited experience with Fibromyalgia when I first wrote it, but now that I've kind of been around the block and figured out my body a little better, it's time to improve it with more current information.

Things are busy at work, as always, and life at home is plenty busy as well.  I do, however, feel like I am able to do more around the house lately.  My personal to-do list, however, is not getting much shorter for some reason.  I wonder if part of the reason I'm feeling better is that I'm forcing myself to do less after a long workday.  I may have to test that theory out and see if doing one or two things in the evening is safe for me to do.  My energy limits seem to be a moving target, so this will be an experiment.

I'm going to follow my own advice and do just one thing on my list tonight. Wish me luck!

Test Results

I had the following tests done to rule out other conditions:

CBC WITH AUTOMATED DIFFERENTIAL
ANA COMMON ANTIBODY SCREEN WITH REFLEX
CRP
ALDOLASE
CPK-CREATINE KINASE
RBC SED RATE
RHEUMATOID FACTOR , IgM, IgG, IgA
URINALYSIS
CYCLIC CITRUL PEP AB
XR FOOT BIL 2V
XR HAND BIL 2V
XR SACROILIAC JNTS MIN 3V

Everything was in normal range except:
1. Urinalysis shows Ketones (40), but normal should be negative
2. Left foot x-ray reveals "Lucent line across the medial aspect of the left navicular bone could be an old fracture or more likely an unfused apophyseal center."  The doctor did a quick search and noted "Kohler disease" is what this is called.  She examined my foot and pressed on the area to look for pain, but I didn't feel anything unusual there.  I guess my bones refused to fuse when I was young.

Additionally, the x-ray of the sacroiliac joints did not find any abnormalities, thus I do not have Sacroiliitis, as my previous doctor clinically diagnosed (and sold me a belt for this condition).

NOTE: My left upper eyelid continues to twitch near the almost constantly throughout the day.  This is day 8 of the twitching in the same spot.  There is a slight chance of cyclobenzaprint causing twitches as a side effect, but I find it strange that this particular twitch has remained in the same spot and behaved the same way for so long. Usually, I get a twitch here and there and it goes away, maybe comes back in a different place.  This is just odd.

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.

Starting Fresh

I just saw my new Fibromyalgia doctor today.  She is a Rheumatologist, recommended by my niece, who also has Fibromyalgia.  It was overall a pretty good experience.

Despite the distance I have to travel to see her, I think she is going to be a good choice for me.  She was very attentive, spent plenty of time asking me detailed questions about my symptoms and finding out which ones bother me most.  She asked about my diagnosis, and it turned out she knew the doctor who diagnosed me, as well as my current general practice doctor. 

Anyway, since my previous doctors didn't do any comprehensive testing to rule out anything that might explain the FMS, she worked up a list of comprehensive tests to do to check for several conditions.  After examining me and giving me the dreaded tender point test and checking out my hands and feet for signs, she decided to add some x-rays to the test list as well.  Get that?  X-rays, not CT scans or MRIs.  The least expensive but effective option for initial investigation.  (Can you tell I've been medically abused?)

I was able to get all of those tests done today, while I was in the neighborhood, since the testing facility is near the doctor's office and they already had the electronic order on file.  (Finally, paperless transactions!)  The place I'm used to going for testing requires the doctor's paper order in my hands when I go for testing.  Forget them!

I got blood drawn at the lab, peed in a cup, and then got my x-rays all done.  All that and I didn't even have to process any insurance crap or even show my ID to anyone, unlike the place I usually go for testing.  Bonus: the lab girl looked at my arms and said they both look "good" for drawing blood.  Huh?  I had to stop her right there and tell her that it's practically a joke that my arms get double-poked for blood or IVs.  She had no problem.  One poke and it was nice and easy.  She was humble, too, saying that being dehydrated can make it hard to draw blood.  I'll keep that in mind, but with all the times I've had it done and it went horribly wrong, I think she deserves some credit.

Getting back to the doctor's office, the staff there seems like an efficient bunch, too.  For starters, when I got there, they had lots of papers for me to sign, but not fill out.  (When your hands shake and hurt when writing, you learn to appreciate things like this.)  Everything was pre-completed with my information and I just had to double-check it all and sign.  Everything was correct, too.  They are even taking care of transferring my file information from my previous doctor to this one, with a single form I completed and signed.  Any previously done labs or notes will be available to my new doctor soon.

Oh yeah, my new doctor is having me try a different muscle relaxant to try to replace both the mediocre, chalky, bitter one I am on now AND my sleep medication.  She wants me to try taking this med at night to do double-duty as a muscle relaxant for my muscle spasms and to help me sleep, since it can cause drowsiness.  Once again, I'm pleasantly surprised to have a doctor try to reduce my prescription medications, rather than pushing whatever is new.  What's more this drug has been around for a long time, is reliable, and is available in generic, so it costs me less than a newer, name brand drug would.  On top of that, I'm replacing another prescription, so I'll get further savings there if this all works out.  If not, I can always go back to using the sleep meds or trying a different plan.  Bonus: the doctor asked me for my favorite drugstore and sent the order electronically to them.  I picked it up on my way home.

I will be seeing her again in a couple weeks, after trying the new prescription and all the lab results are in.  We will discuss whatever is uncovered by the testing and start fresh.  If nothing new is uncovered, we continue to treat my Fibromyalgia as best as we can.

I am Off Savella!

This is just a quick update to let you all know that I managed to successfully wean off Savella on my own, during four weeks of graduated dose reductions.  I have been Savella-free for several days now and all seems to have gone okay. 

I have been feeling much better off it than on.  I've been sleeping a LOT better lately, the nasal bleeding has stopped completely, I am not getting as many headaches, and my heart beat seems a bit more reasonable and less distracting.  I'm not sure the pulse is much lower, but it will probably get better with time.  I don't get the distracting thumping as much, either. 

As for my blood pressure, I'm going to get that re-checked this Friday at my follow-up visit to my general doctor.  Hopefully it's back to normal by now, since the symptoms of high blood pressure seem to have gone away.  I'll report the numbers as soon as I get them.

I am going to see my new Fibro doctor this Tuesday, since my last one has used up all of my patience and trust.  She will be managing my fibro symptoms on a regular basis and prescribing the maintenance medications as needed as well.  (Although I'm off Savella, I still need to take other medications.)

As for picking a Lyme specialist, I haven't decided anything on that just yet.  I'm still researching my options.

The Chronic Lyme Disease Journey 101

As I mentioned in my last post, I'd just recently been doing a lot of research about Chronic Lyme Disease.  What started it all was a very detailed web page about Lyme that I'd stumbled into while recuperating from what I still am unsure hit me a couple of weekends ago.  I don't remember exactly how I found it, but knowing me, while I was suffering, I was probably searching on my smartphone for possible causes of my odd symptoms and clues about whether or not a doctor visit was warranted over it.

I have known about Chronic Lyme Disease and it's possible ties to Fibromyalgia and other mysterious illnesses only because a friend of mine told me of her successful battle with Lyme after first being diagnosed with Fibromyalgia.  As you savvy readers may already be aware, Fibromyalgia is not technically a "disease" - it is merely a syndrome, a collection of symptoms.  Fibromites like us have a large collection of systemic symptoms and the medical community has only gotten as far as giving the collection a name.  There is no known cause or cure for these symptoms, so our care pretty much consists of treatment of the symptoms that are most disruptive.  Treatments rarely improve things for most of us and, actually, many of us seem to worsen over time, despite our adherence to treatment regimens and habits.  Why?  "Nobody knows."  Or so they claim.

Increasingly, I'm becoming more and more aware of the complex world of Chronic Lyme Disease.  There is lots of information available out there from people who want to help spread awareness and knowledge, but there is also conflicting and misleading information, as well.  Sorting through it all can be confusing and disheartening, but knowing someone who has been through it, though, gives me a bit more confidence in finding the right information and making smarter decisions about it all.

First, I'll go over some of the very basics.  (I'm new to this, so please forgive me if it turns out I've misstated anything, but definitely correct me in the comments so I know.  Any supporting information via links would also be helpful.)

Lyme Disease is a bacterial infection that is carried by ticks and spreads to humans through tick-bites.  It seems the bacteria can cross from a mother to her baby during pregnancy as well.  If a person notices a tick bite, possibly that characteristic bulls-eye rash, and a rapid-onset illness, that person can likely be cured of the acute infection with a few weeks of antibiotics and be done with the entire thing.

What I'm learning about, and what is controversial in the medical community, is Chronic Lyme Disease.  This is when that same bacteria remains in a person's body for a long time, untreated and possibly unnoticed.  It may be dormant or latent, or may be affecting the person very slowly over years, so the person never associates any of his or her health effects with anything to do with Lyme or tick bites or even infection.  Tests for various illnesses usually come back negative, though the person continues to suffer new and worsening symptoms.  (Sound familiar, fibromites?)  Depending on where the infection decides to spread in the person's body, symptoms can vary.  Some organs may suffer more symptoms than others.  The skin, blood, bones, or brain can be affected, among all the other areas of the body.  Needless to say, infections that live in a person's body can do some nasty things to that person.

The controversy is perhaps a bit too complex for me to sum up here, but this bacterium is difficult to study and requires a researcher or doctor to dedicate quite a lot of time and effort to learning about it in order to understand it sufficiently to diagnose it in a person, and treat it effectively.  It can be hard to recognize and many undertrained doctors will miss it or flat out claim there is no infection present.  Another reason for this problem is that the testing that is currently available for detecting Lyme infection or the antibodies to it, are notoriously inaccurate.  False negatives and false positives are common, and most doctors don't realize this.  They might test, see a negative, and quash any further investigation into a Lyme infection possibility whether accurate or not.  This is obviously a problem.

The problem is bigger than most people realize, too.  The ticks that carry this disease used to be thought only to live in certain areas of the eastern United States, and perhaps a small area in Wisconsin.  As specialists continue to collect tick samples from various areas and check them for Lyme, it has become apparent that Lyme is spreading as these ticks are being opportunistic about surviving while other species that may have kept their populations in check are dying off.  It's reaching a lot of areas previously thought to not have any Lyme.  You can't always go by where people live, either.  These days, a lot of us travel frequently and all it takes is one, unlucky tick bite to become infected.  It could happen in one day-trip.  This is not just some rare disease anymore.  It's becoming a silent epidemic and ignorant doctors are inadvertently allowing it to continue to afflict their patients.

Personally, I have not been tested for Lyme Disease (yet).  I have brought it up to my most recent Neurologist, who served as my Fibromyalgia specialist.  The conversation went something like this.  

Me: I'm interested in ruling out other illnesses that seem similar to Fibromyalgia, like Lupus or Lyme.  Can we do some testing for those, for my peace of mind?
Doctor: We can test you for Lupus with an ANA.  I don't think you need to worry about Lyme.  That's only for people who live on the east coast.
Me: Are you sure?  I've traveled to North Carolina a few times, and I have been to Wisconsin woodlands numerous times.  I may have picked up a tick and not known it.
Doctor: Have you ever had the bulls-eye rash?
Me: I don't think so.
Doctor: Don't worry about it.  You don't have Lyme.

(The ANA came back negative, by the way.)

I also visited an infectious disease specialist all the way in downtown Chicago at a prestigious hospital, hoping for someone to take me seriously and just check me for anything my other doctors may have missed.  I basically got the same treatment when I brought up Lyme Disease (except he abandoned me when he got a phone call near the end of our appointment and just never returned).

Since these incidents about a year ago, I haven't thought about Lyme much at all.  In fact, I didn't really think much about it then.  I just wanted something better than a Fibromyalgia, dead-end diagnosis to work with, and since my friend turned out to have it, I thought I should get checked out, but I didn't think it was much of a possibility for me.  When I got dismissed by the doctors for bringing it up, I kind of abandoned the possibility and started to try to accept not knowing how or why I got ill and just deal with it as best as I can.

Then that web page I mentioned earlier in this post caught my attention and kind of hit me in the head with the details.  I was looking for details and was curious to learn about Lyme.  Although it's now old (2004), I am far behind and starting from scratch on learning about this all.  I read through it somewhat furiously, kind of like a hungry reader eats up the words of a juicy novel.  Why wasn't I aware of this?!  Why didn't anyone tell me?  I felt like I was actually understanding things about this disease that I'd until then, really only known a factoid or two about.  (It had to do with ticks and Lyme, CT, and was some weird disease that people over there got.  That was about all I knew before.)  What's worse, it started to feel relevant.  I didn't realize how common this infection had become and how common it had become for Fibro to actually turn out to be Lyme.  None of the Fibromyalgia resources that I trust and read carefully have mentioned Lyme at all, much less hypothesized that Lyme could be the cause we are all looking for.  None of them ever encouraged us to seek out a Lyme specialist and get checked out to at least rule out Lyme Disease.

I read this site from the perspective of, not someone who seriously thinks she may have Lyme, but rather from the perspective of someone who has a friend who went through it all and urged me to check it out for myself, just to be sure.  I was beginning to understand the technical stuff she'd tried to explain to me before.  (Fibro fog doesn't always allow for learning.)  After having read that page, Lyme now seemed a very remote possibility for me.  The more I learn from various sources, the more possible it seems that this might be something I've got.  I'm not convinced I have this infection, of course, but from what I've read, it seems I'm kind of a textbook case of Chronic Lyme Disease.

Today, I'm thinking I can no longer afford to assume that I'm not infected.  This is a serious illness and can kill under certain conditions.  I need to at least learn more about it and pursue an evaluation by a qualified LLMD (Lyme-Literate Medical Doctor).  There is no other option.  If I don't try to find out whether I'm infected or not, I'll never know.  I always tell people that if you are going to regret something, choose to risk regretting having DONE something, rather than having NOT DONE something.  At least you'll know if it was a bad idea, at worst.  If you never do it, you'll never even know if it was a bad idea or not.  So, I'm starting on my Lyme journey.

Since reading that first article, I've visited a few legitimate and helpful Lyme website and groups, asked for LLMD referrals from several sources, read more personal stories from members in all stages of their journeys, and watched a pretty good documentary about the topic, called "Under Our Skin", which happens to be available on Netflix if you have it, or Hulu online, if you'd like to watch it.  (It is less than 2 hours long.)  The trailer is also available on the film's website.  The film features many kinds of patients: newly diagnosed and starting treatment, severely ill, invisibly ill, mostly recovered, untreated, etc.  It also features several researchers and doctors, touched on the science of the spiral-shaped bacteria and the scientific difficulties of studying it (mostly in layman's terms) and the unfortunate controversy and crooked politics that have made treating this epidemic disease so expensive and difficult for most people who suffer with it.  While watching, I jotted down the names of anyone mentioned who might serve as a trusted resource of information or help to me or others looking for help with Lyme.  Many of these names are also listed at the website.  I would recommend watching this documentary as a good start in getting to understand the basics of Lyme disease and what it's like to get tested and treated for it.  The documentary itself has won many awards.  I was disappointed, however, in the lack of information regarding why testing is so difficult and inaccurate, though I'm reading more about iGeneX testing and how that is becoming a more trusted testing tool for Lyme.  I'm still learning about that.

Most recently, I read this national news article about someone whose spouse fell mysteriously ill and embarked on the Lyme journey.  A lot was learned on that journey first-hand, including the hot mess of political nonsense that continues to prevent many innocent victims from getting the care they deserve.  The article I read is actually an excerpt from a longer one, which you can read or listen to at the following link.  It's entitled "Chronic Lyme Disease: It's Time To Solve The Medical Mystery Inside An Enigma" By Laurie McClellan.


From what I've read, the most effective treatment for Chronic Lyme Disease, a bacterial infection that can affect any and every organ in the body, is a very long treatment of antibiotics.  If the bacteria are present, the antibiotics will find them and start to kill them off.  The die-off of bacteria end up having to be removed from the body by way of all the garbage-collecting organs, like liver and kidneys.  Many of you fibromites already know how taxing it can be on your livers to just take the prescription medications we all take to try to keep our symptoms reasonable.  Imagine your liver trying to clean up a very large amount of dead bacteria!  It can drain you in much the same way any flare-up can.  The term for this symptom flare-up that is caused by antibiotic treatment is the Herx reaction, short for "The Jarisch-Herxheimer Reaction".  You can learn more about it by searching the web, as many have described it in both scientific and personal terms.

Whether you have Fibromyalgia, Chronic Fatigue Syndrome, MS, Lupus, ALS, Parkinson's, undiagnosed systemic symptoms, or aren't ill at all, I encourage you all to read at least the abbreviated version of the aforementioned article, watch the documentary, and learn more about Chronic Lyme.  Join the groups online.  Some good ones I'm in through Facebook are Turn the Corner Foundation, which stems from their full website, and Lyme Disease Awareness.  Lyme Disease Association, Inc. and International Lyme And Associated Diseases Society are also good websites to check out and learn more.

"A journey of a thousand miles begins with a single step."

If you have Fibromyalgia, many Lyme patients in these groups will feel your frustration and assure you that Lyme is very likely the cause of your systemic symptoms, as it was discovered to be for them.  Although it's a definite possibility, know that these patients are not necessarily Lyme specialist doctors (LLMDs) or sure that all Fibromyalgia equals Lyme Disease.  But do consider the the fact that many of them were given a Fibromyalgia diagnosis and left to live with that as a final diagnosis, then tested and treated for Lyme and found relief.  Everyone is different and everyone needs to be considered individually.  Treatment has helped or even "cured" many already, but it can be expensive and taxing on the body.  I'm open to the possibility that Lyme is not the cause of my symptoms, but it could be for yours or for someone you know.  It takes time to learn enough about Chronic Lyme Disease and how to go about getting the best testing and treatment available, and consider the risks associated with embarking upon that arduous journey.  But I want to know.  I need to know.  I am going to select an LLMD, make arrangements to set up an appointment and travel to make it, bring my notes and questions, and find out what my options are.  If I don't seem likely to have Lyme, I leave knowing I've checked it out as best as I can and go back to living with Fibromyalgia.  If I do seem likely to have Lyme and the doctor offers treatment, I will try it knowing it will probably make me feel awful for a long time if it works.  I will take comfort in knowing that the suffering will end or ease up and I will have done what I could to minimize the damage.
 
Are any of you on the Chronic Lyme Disease journey, or have you completed it?  How have things gone for you?  What went well?  What didn't?  What have you learned?  Which websites or groups do you find most helpful?  I'd really like to read your comments and please leave any advice you may have for me, a beginner, as well as any of my curious readers.  Knowing is half the battle, eh? 

Terrible Weekend

I finally made it into work today after spending the last three and a half days in bed.  I am tempted to think I jinxed myself with my last post, turning my frown upside-down on Friday.  Something happened to me right after lunch Friday and it was just a very bad weekend-plus-a-day for me.

It started with explosive diarrhea.  (Hey, shit happens.  It's my forum and I'm going to be frank here, so I hope you can handle it.  That's about as TMI as I'm going to get for this one, though.)  I spent a lot of time in the bathroom Friday afternoon dealing with that.  I finished up my work day and drove myself home, exhausted.  Once I got home, I was relieved and planted myself directly into bed with all the covers over me in my clothes. I was cold and I couldn't seem to warm up, though I don't think I had a fever because I never felt hot or unbearably chilled, just cold.  I probably warmed up some, though, because my chest hived out in a rash. 

Cholinergic urticaria rash on my chest, from my own body heat

For a minute I thought I was allergic to something I ate - maybe soy, maybe sushi - but after I thought about it, I realized that I get heat rashes like this.  I have cholinergic urticaria. My stomach felt beaten up so I didn't eat dinner.

Saturday morning, I tried breakfast, thinking I might need some nutrition, but I developed crampy, abdominal pain soon after eating, so I avoided eating much Saturday and just continued to rest and drink water while staying social with online activities via my smartphone.  I had a small, simple dinner of peanut butter and banana on bread, which was small and not too hard on my belly.

Sunday, I woke up with a headache.  It was the icky kind that I had a few weeks back, when my blood pressure was through the roof and my nose was leaking blood because it apparently had nowhere else to go but out a hole in my head.  I wasn't sure what to think.  My belly was a bit better, but my head wanted to pull me into the center of the Earth and flatten me.  I'm almost finished weaning off Savella, so I didn't know if it was a withdrawal symptom, a side effect from still being on it, or unrelated to it and maybe all about Friday's possibly tainted lunch.

I was useless and laid in bed.  I couldn't even imagine reading or looking at my phone for fun activities.  I was miserable.  I tried to relax and sleep.  I managed to nap, but only after those all-too-familiar starts to fully awakened consciousness, even before ever falling asleep.  This was happening in the pre-sleep stage.  I don't know what that is.  There was no noise, no dream, no reason for these moments that I could understand.  I guess something in my body really flips out when I try to sleep when it doesn't want me to.  When I got to sleep, I dreamt something irritating that made me feel a little cranky and remember awakening suddenly - for nothing.  Again, there was no startling moment in the dream or any noises to wake me.  It was all some internal burst of WAKE THE HELL UP NOW that I cannot comprehend.

Anyway, by Sunday night, I was able to enjoy a great home-cooked dinner made by my husband and didn't feel sick to my stomach afterwards.  At least I had that victory.  I also thought my headache was on its way out, but it seems to feel temporarily better WHILE eating, but then comes back again after I'm finished eating.  What is that?

At any rate, I hoped Monday morning I'd be all set without a headache and ready to work.  No dice.  Woke up feeling awful!  I gave up hope of going to work when I realized I couldn't fathom moving from the bed.  I wanted my headache to fade away, but it was very slow to do so and stuck around through the night.

This morning, the headache was small enough for me to move around a lot better, so I went to work.  I wasn't quite myself, though, but I notice that being around people helps me forget a bit and allows me to become distracted by work or personal chit chat or stories.  I also noticed that my voice decided to leave me.  If the past is any indication, my vocal cords atrophied from disuse over the past three days and now I sound like some kind of elderly smoker.  I will try not to let it bother me and just keep using it, so it can strengthen.  In the past, I mentioned how awful my voice had gotten but people always say they don't notice, so I guess I shouldn't worry.  Could be worse, I guess.

So, I'm on the mend from whatever the heck happened Friday, wasted a weekend resting and not having any quality time with my husband, but at least didn't have to take more than one day off work to deal with it. I'm also progressing toward my last dose of Savella, which will be on the morning of March 9th, if all goes well.  In addition, I've been learning lots about Lyme Disease and a possible connection to Fibromyalgia, and will be posting more about that soon.  There is lots to learn, but it is worth looking into.  If Lyme is causing my Fibro, I can at least try the treatment that has cured many already.  Stay tuned for more on that.

Thanks for sticking with me through this detailed post!

Weaning off Savella and a New Doctor Found

I've completed the first two weeks at the first stage of lower dose of Savella for my weaning off: one tablet per day.  Yesterday, I started the next and final stage: a half tablet per day for 14 more days.  I took a few more half-tabs with me to work, just in case any crazy discontinuation symptoms occurred, but I was fine.

I have done a bit of research on discontinuing SNRIs and learned that some have longer half-lives than others.  Pristiq (similar to Effexor), which I quit taking last July, when I started on Savella and suffered lots of terrible withdrawal symptoms, has a short half-life.  Some people suffer withdrawals if they miss a dose of some SNRIs because they have such short half-lives.  My initial research led me to believe that maybe Savella (milnacipran) had a longer half-life than Pristiq, thus it isn't causing many discontinuation symptoms for me.  However, it seems it's got a very short half-life, but things are more complex than that, based on what this study indicates.  Gee, I sure wish someone who'd gone to medical school could have briefed me on some of this!

I actually feel better now that I'm getting off this evil drug.  I'm sleeping most or all of the night, though I still get very tired for much of the afternoon and evening.  My nasal bleeding is greatly reduced and I've even had days of no blood at all!  YAY!  I'm also only dealing with pretty tame pain levels (for me) so I'm smiling a lot more.  I even turned my frown upside down at work.

I created and ordered this magnet to indicate my mood to my coworkers. 

My heart rate still seems high sometimes, but I haven't measured my pulse officially quite yet.  I assume my blood pressure is at or near normal levels again, but I won't know until I get it tested at the follow-up appointment with my general doctor.  Headaches have been largely absent as well, which I'm thrilled about. I still have symptoms, of course, but they're not absolutely miserable lately, and it seems to match up with the lower Savella doses.

I'm hoping this is all a positive sign that I'll be better off SNRIs than on. Maybe it's a matter of getting used to the everyday Fibromyalgia symptoms and learning to avoid the flare triggers. Maybe regular Fibro without a bunch of additional medicinal side effects feels good by comparison. It's been almost exactly four years now since my official diagnosis of Fibromyalgia and I have learned a lot about what my body is telling me... and I am still learning to listen to what it's saying.

In addition to the above good news, I also decided on my next fibro doctor to try, based on a recommendation.  My appointment is set and I'm going to see if she's a good fit for me.  This doctor's office is actually farther away than I was hoping, especially since I expect to be going there frequently for regular follow-ups, but I've heard good things.  Also, the many other possible local doctors I started to do research on had reviews that were scaring me about some of the same problems I'm trying to escape.  Picking my next doctor was turning out to be a major project.  I'm also racing to beat my expiring prescriptions, since I fired my last doctor.  I don't know if he'll refill them but we'll find out, I guess.

Anyway, the same person who recommended the doctor I'm seeing soon also recommended a wonderful gastroenterologist to me last year, so I'm hoping for the best.  I'll be sure to report to you all on how my first appointment goes.

Hope things are going well for you all!

Pinterest and PB&J in a Cup

Have you discovered Pinterest yet?  It's a fun way for members to organize their interests by "pinning" various websites, photos, or whatever to virtual pin boards.  The kinds of things that tend to come up a lot are: recipes, crafting projects, fashion tips, hair and beauty tips, but you can pin anything you want.  My husband created a board just for his bathroom remodel project, to help him track ideas about all the details of redesigning a bathroom.  It helps when showing a designer what kinds of looks or functions are within the realm of the project.

Check it out and browse.  Every time you refresh, you'll see new things being posted by members.  If you want to be a member, a member like me can invite you.  Just ask.  The inviter will just need your email address of the invitee.  Once you're in, you can start pinning or repinning what you see and organize your boards any way you like.  There is lots of fun and inspiration out there and I am enjoying finding it.

Speaking of inspiration, I just pinned an original recipe to Pinterest today.  Here it is:

Source: Uploaded by user via Benia on Pinterest

PB&J in a Cup: a slushy treat!
1-2 cups frozen red, seedless grapes
1 Tbsp natural peanut butter, warmed (gooey)
a splash of rice milk (or soymilk or other liquid that might suit you)

Freeze up some red, seedless grapes. (1-2 cups of whole grapes is good). Once they are frozen, pop them off the stems and into a blender. Be sure none of the stems get into the blender. Flip the blender on for a quick second or two after the grapes are chopped up nicely. If necessary, scoot them toward the blade between bursts. Add the peanutbutter and rice milk and blend again. If necessary, scoot the mush toward the blade between bursts. Once blended to your satisfaction, pour into a mug, grab a spoon, and enjoy your slushy treat!

The Late Call Back as Weaning Continues

Just got a call from my fibro doctor's office - one of the staff told me this:  The doctor "tried to call Friday" so he's having her call and tell me this.  (This is bullshit.  I only have a cell phone and there is no record of ANYONE calling my number Friday, much less any message.  If he tried, he failed to dial my number.)

The doctor recommends taking two half-tablets every day (halving the full dose a little differently than I'm doing by taking one full tablet a day for two weeks) then if side effects continue, he will switch me to Cymbalta.  At this point I lost control and calmly told the girl this was not helpful at all, that this isn't the first time the doctor has let me down when I needed him, and that I cannot trust him and need to see a new doctor.

He should already have in his records that I tried Cymbalta and couldn't tolerate the severe nausea.  I'm not going on it again.  I'm determined to get off SNRIs for a bit so I can judge if they are making any positive impact at all or not.  Why bother with side effects if the main effects aren't even being relieved?  Screw it.

My only problem now is I need to scramble to find a different doctor or else I'll run out of other prescriptions I need.  I'm having a hard time finding someone close enough and good enough to start over with.  Those of you with fibro out there know how hard it is to find a new doctor.  It's like a new job.  Ugh.

The good news is that, since reducing to a half dose of Savella every day, my headaches have been better (not gone, but lots, lots better), my nose hasn't been bleeding as much, and I've been getting some sleep.  I'm still on the first two weeks of weaning, though, and when that's up and I reduce the dose again, we'll see if anything else changes - good or bad.  Stay tuned.

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.

I'm Blaming Savella

I just got back from an appointment with my primary doctor to address my recent five-day headache and neck pains, sinus congestion, and nosebleeds, as well as crappy sleep that's been going on since Christmas/New Year's.

So yesterday, on day four of this episode, I noticed the head and neck pains have been choosing either left or right, and remain limited to that side at several points on my head: temple, just behind my ear, at the base of my skull, and on my face near my eye or nose.  At any given time, the pain will pick one or more of these locations on one side of my head, and it's been worse at night and in the mornings, with neck pain being very prominent while lying down in bed.  I reflected on this all during the evening, while also noticing that my pain was becoming almost unbearable.

In addition, my nasal congestion issues have been continuing since December 26th, when I thought I'd caught a mild cold, but managed to keep it from spreading to my husband, which seems impossible.  Since then, I've had multiple sleepless nights and many nights of very interrupted and restless sleep.  I've been a zombie version of myself at times and crankiest when morning brings nothing but severe pain and fatigue.

Finally, the nosebleeds have gone from a touch of blood here and there in the tissue to full-blown bloody sprays and red-marker bloody tissue events, including the one from last week that happened at work.

At my last appointment with my fibromyalgia specialist, I brought most of this up, but I hadn't had the headache pattern down then, so it wasn't discussed.  I also mentioned the ridiculously high heart rate I've been having, thanks to Savella, which I started last July.  This is a well-known side effect of this drug, and although he measured my pulse in the office at 104 (normal is about 60), he didn't seem worried about it.  I half-joked that I was using up years of my life to speed up my heart rate.  He laughed.  I decided not to worry, especially since my blood pressure that day, although somewhat higher that normal (I have never had high blood pressure), was still in the normal range.  He reassured me that it would be okay and this was just an annoyance.

Today I learned otherwise.  My blood pressure was taken at my primary doctor's office on both arms.  The first one was about 130 over something.  The other arm was even higher.  Then the doctor came in to talk to me and took it again, himself.  It was 150 over 90.  WHAT?!  Typical normal blood pressure readings for me have been around 100 or 110 over something.  Here are some guidelines about what's normal.

Here's what I know about nosebleeds with headache from searching online yesterday: it can be caused by high blood pressure, among other things.  I didn't, for a second, think that was actually the one causing my symptoms.  Little did I realize, that my body's equilibrium had quickly gotten off track.  As the title of this post indicates, I'm blaming Savella.

I didn't think Savella would be a problem once I'd switched to it (and gotten past all the crap withdrawals of the switch).  Then I started having weird facial flushing.  I figured those would stop, but they haven't.  Then the heart rate increased.  Then the sleep just stopped.  Now my blood pressure is skyrocketing.  I'm even having more tremors from this maniacal stuff.  Fuck Savella!  My head is exploding pain and blood and I can't sleep.  I don't even know if it's helping any of my fibro symptoms anymore.  I want off this crazy drug.

I called my fibro doctor and left a message with the someone there, asking my doctor to switch me to something else immediately.  If I have to, I'll wean off this SNRI and just be off antidepressants, though I know they do help balance out some of the unbalanced things with fibro.  However, I will not take balancing of one thing and unbalancing of others.  That's crap.

Stay tuned for more as things develop.

Oh, forgot to mention that the doctor prescribed Amoxicillin for the nasal congestion, just in case it's infected.  He didn't see anything that indicated infection, but it's worth a shot, since it's been over a month of this stuffy weirdness.  We'll see how that goes.  I have to take a pill every 8 hours for 10 days.

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!

Those Tight Fibro Muscles

I came across this About.com article about how to keep fibro muscles loose, which can be a challenge.  Just thought I'd share it here for you all to read and comment about it.

http://chronicfatigue.about.com/b/2011/12/02/loosening-up-your-muscles-with-fibromyalgia.htm

 I've been very stiff lately, and have been having lots of symptoms all at once.  I will need to see if I can vary my routine a bit to make a difference.

Changing Vision with Fibromyalgia

The last time I had my vision exam, I got a new contact lens prescription and a new, light-framed set of glasses - after two failed trials at varying prescriptions.  It took several weeks, two pairs of trial contact lenses, and a pair of completed glasses before I realized that the originally ordered prescriptions were not going to work well for me.  Am I a freak?  I don't know, for sure, but here's what I do know...

I get my vision checked every year, at least, because I am near-sighted (myopic) and need to see clearly to drive, use a computer, watch television, or see things in general.  I've been myopic since early high school.  My vision is not awful, but the awful part is that it's inconsistent from day to day, or even hour to hour.  During the past few days, I've noticed that my vision is uncomfortable while working on the computer in the mornings, after I install my contact lenses or put my glasses on.  It feels distractingly off right now, as I am trying to focus on my computer screen while writing this post, even though morning hours are long gone for the day.

I usually opt for the contact lenses vs. glasses on any given day, because I prefer to have nothing on my face (pressure can cause headaches and skin irritation for me, thus the ultra lightweight glasses I paid extra for).  I also prefer the fully focused field of vision that I get with contacts.  Glasses have gotten smaller over the years and I find that I have to move my head more to look around when I have glasses on, because I can't focus on the edges very well, like when I descend stairs and look down at my feet.  (For those of use with Fibromyalgia or other chronic pain or fragility issues, being careful on the stairs is no joke!)  It can be a bit more of a bother, but I still wanted an updated set of spectacles for days when my eyes don't want contact lenses in them, or if I want to rest my eyes or read or do close up work that doesn't require correction.

I know that my vision, though imperfect, was very stable before I was rear-ended and sustained the concussion that seems to have developed into myofascial pain and fibromyalgia within a year and a half.  The first odd thing that happened with my vision right after the concussion was that my myopia improved by a whole number!  I found out when my vision was so awful with my existing contact lenses on that I went to see the eye doctor.  The optometrist that had been treating me for a decade was rather surprised to see this change, as even he hadn't seen anything like it in his career.  He did, however, offer the hypothesis that the muscles around my eyes were changing the shape of my eyes, thus my vision, due to the trauma.  This would also explain the pain I was having in my eyes when simply looking up or in any direction with my eyes.  (The pain is much better now, but it seems the vision is still changing at will.)

I take a muscle relaxant at least twice a day, every day, to try to help combat the constant myofascial pain, muscle tension, and spasms that occur in my entire body.  For whatever reasons, my muscles may feel better or worse at any given time, so I assume that they can be changing my vision just as unpredictably and that is what I'm experiencing.

However, there are other considerations, such as:

• the medications I take and any visual side effects they may be causing (I distinctly remember having an episode of double vision while on Lyrica, and that was just with one eye), 
• migraines (I get those crazy auras sometimes and they really mess with my vision), 
• that concussion I had in 2006 and possible long-term effects that may be affecting the vision portion of my brain (among other areas), 
• the sleep dysfunction that comes with fibromyalgia and its own visual effects, 
• the intensity and "flavor" of pain I may be having at any given moment (which can cause tension to escalate while the stress response in the body increases involuntarily), 
• any other physical or emotional stress I may be experiencing (stress response), and
• my age (I'm pushing 40).

I have learned to expect that my body will act up in odd ways without my permission or without warning.  This is just one of those things that I have had to accept: sometimes I can see fine, other times I feel like I'm wearing someone else's contacts or glasses and struggle to do certain things.

Are any other fibromites out there dealing with visual changes like mine?  Please comment.  I'd like to know if this symptom is as rare as my optometrist would have me believe.

Losing Weight with Calorie Count and Calorie Camp

Fed up with my tight pants and unflattering photos like this one,

Me and my gut on last July's Beercation

I decided to get back on my Calorie Count account a few weeks ago to keep track of what I'm eating.  I thought having a food log would also come in handy in doing detective work for my recent IBS symptoms, especially since I've been learning about FODMAPs in foods and which ones may be affecting me.

I discovered there is a Calorie Count mobile application available, which is handy for logging foods on the go.  After logging a suggestion via the mobile app to request a sharing feature on the app, I received a developer reply from the site about a beta version of the non-mobile site, called "Calorie Camp" and was given a link to get on and start using it and testing.  It's a way to share a day's report of foods and activities with others on the site (your buddies).  We support each other with comments and earn badges for doing things right.  I like it a lot!  Until now, I've basically been going it alone, with the exception of letting Don know about my goals.  Having a peanut gallery of people cheering me on online seems to make a difference for me.

I've been on and off Calorie Count for years since discovering it and creating my account, but it's always been a bit of a chore to count calories.  I would lose a little, then wing it, then go "oh yeah, Calorie Count" and get back on again.  With Calorie Camp, I actually find that I want to log, share, and comment with my buddies online.  I want to earn those dumb little badges.  I also like seeing my nutritional analysis (it's very detailed) and striving to choose healthier foods based on the nutrients I seem to lack.  Most of all, I really like the fact that being aware of what I put into my mouth has caused me to maintain a proper level of calories (on average) to actually lose a couple pounds since I've started up again recently.  I want to weigh myself!

This is my favorite thing to look at on the entire site - my own, personal Weight Log graph:

Keep in mind that this graph represent a whole year's worth of time, so the net loss over a year is not too impressive to most people (less than 10 lbs thus far), but I just love the slope anyway.  It's encouraging and empowering.  I made this happen!

That top weight pushing 160 on the left scared me into resetting my Calorie Count goals again last year.  I set things up and left my goals intact for many months while kind of being cognizant of my need to shed some weight but not really logging regularly.  Then, last July, I went on Beercation in Wisconsin with my husband and apparently overindulged quite a bit over that week or so.  (See that double spike over Jul 2011?)  I had a great time, but I came back looking kind of like a potato sack.  (See first photo above.)

The plateau at the bottom right of that little mountain is about where I started up on Calorie Camp beta.  Except for the final upturn from today's weigh-in (I went to a party last weekend and nibbled a bit too much), I've been losing weight, nice and slow, the way I'm supposed to.  The green, dashed line is the trend line, which ignores the minor blips in the blue line of my actual weigh-in actual data.  I'm hoping I can continue with the downward slope.  I have a long way to go yet, but at least it's downhill now and the slope is getting steeper.

If you're already on Calorie Count or want to sign up for your own account, feel free to be my buddy.  If you're interested in beta testing Calorie Camp, especially if you like giving technical feedback, Igor is the guy you want to contact.  Here is the forum about Calorie Camp.

One last thing.  My IBS flare up has finally calmed down in the past few days.  I'm hoping the FODMAP research and diligence has been a factor.  It's a theory that finally makes sense to me and seems to be making a positive impact on how I feel.

Best Bra for Preventing Pressure Hives

In the last several years, my body has become sensitive in myriad ways.  Among the latest is the fact that my skin becomes itchy and breaks out in hives if pressure is applied for more than a few minutes in a single area.  This is called Delayed Pressure Urticaria or DPU.

I first noticed this new problem after kneeling in the garden to weed out the non-natives one afternoon.  I was wearing cushioned kneepads the entire time, but the next day, while attempting to kneel down indoors to do something quick, I noticed pain and sensitivity on my knees.  When I looked, I saw that they were still marked with red circles on the pressure points.  Touching the circles confirmed they were ultra-sensitive, even a full day after the kneeling activity. 

As you can imagine, any tight clothing will leave similarly painful, red areas on my skin for hours after removing it.  I have had to stop wearing any uncomfortable shoes I owned after an incident at a party where I wore my shoes for a couple hours, then had to do some walking (a couple blocks to a train station) to get back home.  I could not effectively walk without excruciating pain for the entire next day and my feet were still very tender for days afterwards - a whole week, if I remember correctly.  They felt like they'd been burned in fire.  All my high heels are either gone or on their way out while I try to replace them with Dansko or comparably (expensive) quality shoes for problem feet like mine.  Even socks with too tight a top elastic band are out for me.  I've seen argyle patterns on my legs after a day's wearing.  It's a bit ridiculous, actually.  I take my clothes off and I look almost like I've still got clothes on, per the marks on my body that remain for hours.

Another problem with daily living is wearing a bra.  I'm rather small-breasted anyway but because of the discomfort, I have been opting for tank tops this summer or loose tops to try to get away with skipping the painful boobie conTRAPtionS, but there have been times when I just couldn't go without.  Time and time again, I found myself cursing the thing by evening time, throwing it in anger only too late after the itchy hives had made their appearance.  The worst areas seemed to be the side straps, though I was marked with red lines just about everywhere the bra touched my skin.

Recently, a certain brand of bra was recommended to me and I became interested in finding something better.  I tried that brand and wasn't too impressed, but fortunately for me, I had decided to check it out at the mall and made the most of my trip by stopping into another store to look around.  I was also thinking it was time to re-evaluate my size, since I'd been in the same size for over a decade now, and the DPU made me wonder if it was unnecessarily tight on me anyway.

I took a careful look around at about 30 different styles of bras at the mall's JCPenney department store, looking mainly for inside stitching and fabric that might be smoother and more comfortable than most bras.  By some miracle, I had actually found what I was looking for!  There was a display of colorful bras by Maidenform called "Pressure Free" that had a cool, smooth fabric specifically on the side straps and no zigzag stitching on the inside to irritate me.  I grabbed a few sizes and tried them on, plus a few other brands I'd seen, just in case they felt better than I expected.

The winner, hands down was this Maidenform bra and I would recommend it to anyone having a hard time with bras irritating her skin.  (Turns out a slightly larger size fit me more comfortably, too.)  They were not cheap at $35 each, but JCP always has sales and this time they had a buy-one-get-one-half-off sale, plus I had a discount coupon for $10 off my purchase to help me offset the cost.  I committed to two in my new size and gave them the full test drive for a few days before deciding whether or not to "marry" this brand.

After several wearings, my only irritation at the end of a full day's work was the rectangular little patch on the back hook closure part.  By habit, I was using the loosest hook option and something was just itching and scratching my skin on my back.  I was sad that this might be as good as it gets for me, but I tried the next set of hooks and that problem was completely cured so I'm all set and thrilled to pieces!  Now I can wear bras again and be a proper lady.  Okay, well at least I can wear bras.  ;)

Now that I knew my new size and had done a confident test drive, I shopped in earnest for a good deal on this same bra so I could replace my old collection.  I settled on the online store called "Bare Necessities" and used my Ebates account to get a percentage back in cash (I love Ebates!) and bought enough to get free shipping.

One more thing: The colors are a little non-standard, but they do have beige, white, red (with some pinkish trim for some reason), navy (sorry, no black) and a black/gray animal print.  Don't know why they decided on this set of colors but they could have done worse, I suppose.  Perhaps if they sell better, they might add more colors to the selection.

I sure hope this helps someone out there.   Feel free to let me know how this works out for you.  I'd love some good news.

P.S.  I'm in no way connected to any of these brands or profit from any mention of them except that I have an Ebates account and wouldn't mind a referral bonus.  However, if you don't use my link, I'll still be happy if you find a bra that helps you as much as it helps me.  My advice is free because I care about objectivity.  That's why I don't advertise on my blog.