Fibro is Real

This is a good article for people who have been accused of, or have accused others of, being a hypochondriac when it comes to the symptoms of Fibromyalgia.  Those of us who suffer learn first-hand that the physical symptoms that affect us are ask too real. We have read the research to support it, and do our best to live with these symptoms. We definitely do not need the additional burden of ignorant accusations.
Is Fibromyalgia All in My Head?

Letter to My Future Self

Wow, summer is just flying by! Where does the time go? I can't believe July is almost over.

I have been doing relatively well with fibro, being active, and eating healthier. I still have issues, like trouble sleeping and pain symptoms, but overall, I feel much better lately and have been using my (unpaid) intermittent FMLA time less.

One idea I had been thinking about doing for a blog post is writing to my future self. Many of us write in out journals and blogs about how things are going at the present moment, but even if we don't do it regularly, we may, someday, look back and read an old entry, for whatever reason. Why not tuck in a little message to our future selves?

My message to me, whenever it may be that I read it, and however I am feeling then, follows...

Dear Benia,
I hope you are well. I am doing much better lately. I've been eating healthy lunch salads from Whole Foods most work days, and doing Vinyasa yoga each Wednesday for an hour.

My new fibro doctor is very nice and reduced my medications to just one for fibro, Cyclobenzaprine (aka Flexeril). I am doing well as it helps with muscle spasms as well as sleep. (I take it at bedtime.)

I am currently off all supplements until I need them and doing okay. My IBS symptoms are under control, thanks to my realizing I was getting too much of some fat-soluble vitamins from my diet, and did not need additional supplementation.

Work is busy and a bit stressful at the moment, for both of us, actually. We are hoping to make some positive changes there.

The master bathroom remodel is mostly finished, though we are still waiting for a couple of doors to come in and get installed. The project started in April! I'm just glad it's almost over.

The weather has been extremely hot and dry this year. The summer weather started at the last week of winter, in March. We've never seen anything like it! Many if our native plants are blooming early this year. They are surviving, though, and the wildlife is happy to enjoy it, too. 

We have also been having a lot of freak thunderstorms - almost exclusively. They roll in, pour rain for a bit with plenty of wind, lightning, and even hail. Then they move on and it's back to hot, calm, sunny weather.

It's been a strange year, but I'm trying to focus on the positives. I am going to update my WRAP soon, since I have learned a lot about myself since I created it.

Hope you are doing great. I love you, and don't ever forget that!

Benia

The Mack Truck is Back

So I had two good weeks without many symptoms, feeling good and in control of things with diet and exercise happening and everything.  Then Monday, something started up and I'm flaring up for some reason.  Was I too greedy with doing things while feeling good that I triggered a flare by being too active and not resting?

Last night I was awake all night.  Not so much as a nap came over me - all flippin' night.  I tried relaxing in bed with ear plugs, without ear plugs, tried lying on my back, my sides, tried thinking of pleasant things.  Nothing.  Hours and hours of stressful thoughts about various things going on at work that have been bothering me lately kept creeping back into my mind and and I could not fall asleep.  The stress broke me.  I don't know what it is about the middle of the night, but I felt so hopeless and frustrated.  I moved to the couch and read blog posts in my Google Reader on my phone to try to take my mind off things, since I'd given up on sleep.  Forget work today.  There's just no way.  I am a wreck.  I took a much-needed sick day.

It seems my abdominal area is tender and painful lately, mostly near the left side.  Air bubbles or ulcers  - I don't know any more.  It doesn't seem to matter what I eat, unless the tiny bits of apple I found in yesterday's fruit started something, but I picked them out.  (I'm allergic to raw apple skins.)    I just feel crappy.  Then there's the back spasm in my right side that came back to life.   Even the hydrocodone I took at bed time wasn't helping that.  I wonder if the medication kept me up instead of making me drowsy.  Side effects don't always make sense in my body. 

I've been trying to stay on this side of the sane/crazy borderline, but last night I think I wandered over the line a bit.  My mental state seems back in good enough order, but my body is stuck in physical disarray at the moment, and notice that it affects my thinking a bit.

As always, when I stay home due to illness, I can't help but feel the invisible pressure of all those chores and tasks I have to do.  There is some compromise where I go and do a couple of easy things, but I have a hard time just resting, which is what I need to be doing.  For instance, I have been meaning to update my WRAP and wish I would do that, but I know I should not be at the computer too long with this spasm screaming at me.  I washed up our farm veggies (we have them delivered weekly from a local CSA, Wellhausen Farms) and made a healthy salad for lunch, but it took a very long time, and I was tempted to just grab something like cereal and leave it all undone.  Despite all the healthy ingredients in my salad today, my belly is also complaining again and uncomfortable.  I folded some laundry, too, because I knew it would nag at me if I didn't.  Despite my fatigue, I cannot rest easily at all.  This is one of the common frustrating symptoms of Fibromyalgia.

I hate that I can feel so great, then shitty, so quickly.  It makes me feel bipolar in some ways.  I was hoping I could coast through the summer feeling almost like a normal.  I guess I had forgotten my limitations again and overdone it with activities.  I will learn from this flare, just like with every flare, but I'm not enjoying this lesson.  Ugh.  Time for me to lie down.  I hope my next post is more fun than this one.

Getting Too Much of a Good Thing: Supplements

I think I've finally broken the spell of my latest IBS flare-up!  I was headed down one path, but switched gears when I thought of the second path - the one that just might be the answer.  Let me explain...

As you may know, despite a welcome increase in energy and function, my belly has been all about IBS for the past month.  I got tired of waiting for this flare to calm down, since it's been causing me problems every single day for all this time (even through my recent vacation in New Orleans) so I finally broke down and ordered an herbal remedy.  It's called Iberogast.

My niece recommended this product to me after our great GI doctor (she also recommended him to me and he's great) recommended it to her.  I thought I'd give it a shot and see if it changes anything.

When my husband saw how much alcohol is in it (31%), he joked that it would be cheaper for me to use Jägermeister instead.  I scoffed until I started wondering what kind of ingredients are in "Jäger" and did some research. 

There are 56 ingredients in Jägermeister (vs. the nine herbs in Iberogast) and many of them are a secret, but considering both Jäger and Iberogast are from both Germany, and have both been touted as effective digestive aids, I have to wonder if both might be equally effective.

Anyway, Iberogast comes in a small, glass bottle with a top that releases the fluid in drops, so you can count them for appropriate dosing.  Adult dosage is 20 drops into a drink with each meal, as needed.  I took this with five total meals during just a couple days, with no change in my symptoms, before I stopped using it.  I had intended on giving it at least a full week's trial before determining anything about its efficacy, but before the second day was through, I got an idea about what might really be causing my symptoms, so I switched gears to find out.

My hunch was that perhaps my body was trying to rid itself of excess vitamins and minerals.  Too many nutrients?!  It seemed crazy, but the more I learned about fat-soluble vitamins and digging into my Calorie Count food log history and nutrition analysis, the more plausible this seemed to me. 

I'd been taking a lot of supplements every day for a while now, some per my previous doctor's recommendation, some per my own conclusions about what I need:

• multi-vitamin (includes iron)
• vitamin C
• vitamin D3
• super B-complex
• magnesium malate (twice a day)
• calcium
• fish oil
• probiotic

Several weeks back, I started eating more nutritious lunches during the work week and eventually decided to get my lunch from the nearby Whole Foods Market every workday that I could.   I loved getting delicious, nutritious food every day and not having to worry about dinner or weekends as much.  It worked out great, I thought.

I checked the analysis tool in my Calorie Count food logs (good thing I had this handy) and saw that many of the nutrients tracked were well over 100% for the day for me, on average.  Vitamin C was ridiculously high (>1200% average per day).  Vitamin A was very high (>300%).  Calcium was high (~150%).  I was even getting more iron than I needed (~200%).  Who gets that much nutrition in a day?!  Well, me, I guess.  I don't even know how much vitamin D, vitamin B, or magnesium I was getting.  Those nutrients aren't even tracked in CC, but since I was adding these supplements to my nutrient-rich diet, I wouldn't be surprised if they were crazy high, too. 

So, reading up on vitamins and nutrients. I learned that some vitamins, like vitamin C and vitamin B are water-soluble, so getting more than enough is no big deal - the kidneys flush them out and you flush them down when you go pee.  (What a way to waste vitamin C!)  But other vitamins, like vitamin A and vitamin D, are not water-soluble, and the body can get too much of them.  I also know that magnesium is an ingredient in epsom salt and other laxatives.  So I wondered if all these supplements, or even just one of them, could be causing my body these daily diarrhea episodes.  To find out, I was going to skip just the magnesium, but I decided to stop taking ALL of my supplements, just to see if anything changes.

I stopped taking them last Thursday and haven't taken any since.  By Sunday, I noticed a change: no poopie all day!  I was hopeful that this meant the end of the diarrhea, or at least a break from it.  I still experienced a crampy few minutes this morning, after breakfast, but later today, I actually had a regular movement.  I was so glad I wanted to tell people at work about it and celebrate... but of course I didn't.

Nothing's for sure, of course, but these are positive signs that I'm on the right track with this vitamin thing.  For now, I'm glad I was able to put this together and elicit a positive change myself.  I will wait and see if I continue to get relief by avoiding vitamins I apparently don't need, thanks to my healthier diet.  I guess the takeaway here is that you actually can get the nutrients you need from food and you can get too much of some nutrients.  Pay attention to what you're eating and if you have a mysterious IBS flare while eating healthy foods, consider quitting the supplements to see if it helps.  If not, there's always plan B, whatever it may be for you.

Doctors Make Hall of Shame List

Wow, I just read this article, featuring a hall of shame for a bunch of fibromyalgia doctors with a definite conflict of interest between taking care of their patients and helping pharmaceutical companies make more money.  Not too surprisingly, one of my former doctors made the list.  (I am in Illinois, so I'll let you guess who it is.)

Although, to be fair, despite my husband referring to him as a quack, I must say that the drug he put me on was not one of the big three - he was the one who put me on Pristiq.  This was several years ago, before his suburban Chicago office that I was visiting was suddenly shut down.  At the time Savella wasn't even approved yet.

Also, his big thing at the time was the theory that FMS was really just a yeast overgrowth condition gone systemic.  He convinced me to go yeast-free for 3 months.  He actually prescribes this avoidance diet for 6 months, but we had to stop at 3 because I'd lost so much weight on it.  However, I felt worse on it and we concluded that it was not my problem.  He claimed I was the first patient who didn't improve on this diet.  Sorry.  Really, I did my best to make sure I didn't cheat so I would know if I had any control over my symptoms.

I also didn't like how how simplified FMS to just two basic symptoms: pain and fatigue.  I got a hold of a video of his about the whole yeast overgrowth theory for Fibromyalgia patients and kept repeating that "pain and fatigue is Fibromyalgia."  As a patient, it got irritating pretty quickly.  What an oversimplification!

As the article mentions, some of these doctors used to be about the patients, but since then have gotten mixed up with suspiciously pro-drug company studies and such.  Even my last doctor seemed okay until he pushed me to switch from Pristiq to Savella.  Ever since then, I felt I was on my own.  He didn't call me back while having horrendous withdrawals during the initial switch, and he didn't call back when Savella was causing my blood pressure to skyrocket and my head to ache all the time.  They must have gotten to him, too.  I left him after weaning off Savella by myself.  BY MYSELF!  I had a doctor who had nothing to do with me while I was in crisis.  No thanks and good-bye.

My current doctor is very nice and she reduced my prescriptions by substituting two kinds for one, old one, which is available in generic form, which translates to cheaper for me.  She listens to me and my needs.  She respects my desire to be on fewer meds, due to side effects causing more problems than my Fibro, it seems.  She's good.  I worry though.  Does everyone have a price?  Am I going to go in there one day and see a different side of her?  I sure hope not, but I'm on the lookout for those subtle cues.

At any rate, since then, I've learned lots from Fibromyalgia Network, including the fact that all their funding comes from membership fees - none is from any advertisers.  They publish lots of interesting articles and study findings in their quarterly journals and, although some of them credit doctors from this unfortunate list, most of them seem to make good sense.  There is lots of advice about how to cope and do stretches and exercises that are beneficial for us.  A lot of the scientific stuff is broken down with graphics that help us understand how chemicals can get out of balance or how drugs affect our bodies.

Be your own advocate, fellow fibromites.  Look out for those who seem to be helpful, then push products on you.  There's no shortage of sleazebags out there willing to prey on desperate people in pain.  If someone is selling you something, be skeptical.  Do your homework and learn as much as you can from many, objective sources.

Yogurt for Breakfast, Yoga for Lunch

Despite my continuing, daily IBS moments, I had a great time visiting the French Quarter of New Orleans last week!  This was my third trip to the Quarter, my last one in May of 2005, before Hurricane Katrina hit.  Luckily, things are pretty much the same again, though we noticed some of the smaller one-off businesses were replaced by those owned by one or more other businesses.  Anyway, the food was delicious and there was plenty to drink as well.  We are older now, so we had to cut back to just two meals per day.  (I don't know how we used to do it eating all day long!)  There was a lot of walking to do as well, and though Don worried I wouldn't be up to it, I made an extra effort to prove him wrong.  I needed breaks, of course, but I still had a fun time!  We took the train this time, too - a new experience for both of us.  It was more fun than driving and less annoying than going through security at the airport.  (We're boycotting the airlines until they stop being ridiculous to the passengers about all this TSA bullshit.)  It was a long ride and both ways we traveled through the night.  Sleeping on a train - let me rephrase that - TRYING to sleep on a train is not as much fun, but we survived and enjoyed the new experience. 

Now the party's over and it's back to work and back on track with the healthy diet.  I feel fatter then when I left, but hey, I was on vacation.  Lack of stress is worth a weight-loss setback in my book.

I'm back in Calorie Count's Calorie Camp and logging my foods and studying my nutritional intake.  Today, I started my day with a fun yogurt mix.  At my house, we like to minimize waste and buy the large yogurt containers and get either plain or vanilla flavor.  When it comes time to have some, we dress up dinners with plain wherever sour cream might be called for, or mix in some fruit or preserves for a sweet snack.  I cut up a peach into a bowl, added some French Vanilla Stonyfield Farm yogurt, and sprinkled in some generic Grape Nuts for a fun breakfast.  I'm still dealing with this darn IBS flare-up (no break during vacation either, unfortunately) so I'm hoping the probiotics and occasional yogurt will help calm things down eventually.  There seems to be no rhyme or reason to what causes my symptoms to flare-up or calm down.  I'm speculating something slower or cumulative, multiple triggers are doing something, but it's so hard to pin it all down.

In addition to healthy diet efforts, I started my very first yoga session today, at lunchtime.  (Note: my fibromyalgia doctor has recommended that I try some yoga and start slowly.)  My employer has coordinated with a yoga instructor to come visit our building every Wednesday (starting last week, so I missed that first session) and welcome us to an hour-long session during our lunch hour.  I had done yoga at home years before I developed Fibromyalgia, Chronic Myofascial Pain, or IBS, or any of my other current health issues, but this was my first yoga class.  It was good.  I felt the work in muscles that aren't used to doing that much work.  I shook and did some sweating.  (Unfortunately, there are no shower facilities so I did my best with a change of clothes, a wet wipee "wash" and some deodorant.)  I kept up with most of the poses and even opted for some of the extra challenge poses, but I did have to fall back on others here and there.  I had the most trouble with my wrists after all the push-ups and hand support, but hopefully, I'll build up some strength over time.  Overall, I'm happy with the convenience of the class and being able to enjoy it with my coworkers as well.  The cost is $10 per session, which seems reasonable to me for the convenient scheduling.  Our instructor was also nice and helpful in correcting posture when necessary.  I'm looking forward to the next one.

I didn't have my traditional Whole Foods buffet salad today because of yoga today, but I planned ahead yesterday while there, and bought some self-mixed trail mix and a few nut/fruit bars I'd been meaning to try.  I also brought a banana to work today.  They all helped to keep me full and give me good nutrition with some fun flavors, while allowing me to graze while working. 

I did, however, make the mistake of eating before the yoga session, though, which I did because I was hungry and wasn't thinking, but... NOTE TO SELF: when you have IBS that seems to act up whenever eating anything, be mindful of the timing of any activities that may keep you from a toilet.  I managed to finish things up in time, but it was kind of close, and I felt a little off on the way to class.  Next time I'll work out hungry and eat later.  See?  Learning.  It's all good.  I like progress, even slow progress.  Anything's better than that downward spiral that can suck you down.  I'm working hard to avoid that.

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

Party's Over

I was afraid my fibro "remission" was ending when I started feeling icky in the belly a couple days ago. I handled it as an IBS flare-up. No rhyme or reason. It just happens. I accept that.

Then yesterday I had trouble breathing and felt very fatigued, out of nowhere. I worked through it because I have a very urgent and important project to work on so I pushed on, stoically.  I doubt my boss appreciates my efforts. I make it look to easy sometimes, though I still suck at faking feeling fine.

Today, I'm starting to realize I'm having more, not fewer symptoms, and I have to admit... (sigh)... this is a fibro flare.

My belly hurt all night, along with some nerve pains firing frequently in my right forearm for more than a day. During the night I also noticed my right knee hurting for no apparent reason. (My left one is usually the bad one.)

Today, I was completely wiped out and still dealing with vague abdominal pain with a weird lack of appetite at work. Toward the end of the day, I just wanted to go home and lie down.

When I got home, though, my bed was not available due to workers finally installing something in our master bath. I did not want to distract them, since the project has been going maddeningly slowly for the past few weeks now. I went to the computer room to try to relax. 

Well, I didn't do it right. My back is bitching. Went out for a bite then finally, FINALLY, I'm here in my bed. I'm feeling these odd shivers of pain coming over me, trying to get my attention after I've worked so hard to ignore the signs.

Yes, body. I acknowledge that I am ill. I have a note on my desk to remind me to take beaks or you will force me to, by shutting down. I failed. Fuck me. It's time to pay the piper. Crap.

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.