I Finally Have Answers! If you Have Fibromyalgia and Are Hypermobile, Please Read!!

2018 has been extremely important in finally figuring out what is behind all of my health woes. I have been feeling markedly worse the past several months, with more injuries, more pain, and more questions as to what the hell is happening in my body. As my condition continued to slide, I became more adamant about figuring this out, once and for all. And this is one of those times when things have to get worse in order to get better, because I finally have answers and something that ties all of my apparently random symptoms into a single diagnosis that explains everything for me: Ehlers-Danlos Syndrome (EDS), Hypermobility Type (hEDS).

EDS also tends to bring Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS) along with it, which also seem to be what I have been experiencing, according to the specialists I have seen thus far.  We are still working on confirming the MCAS, as it is tricky to test unless there is an actual reaction occurring at the time of testing.  POTS seems likely per the EDS geneticist and the MCAS specialist, but I need to wait until January of 2019 to be seen by the EDS knowledgeable specialist who can test me officially for that.  A tilt-table test is likely to happen then.

In addition, Osteoarthritis (OA) also tends to occur in EDS patients because of accelerated wear and tear on the joints.  I have already been diagnosed with OA by my rheumatologist, after showing her my Heberden's Nodes which have formed on two of my fingers already.

After reading all about this connective tissue disorder and how it affects people who have them, I realized I have a lot on the very long checklists.  So I sought out a local genetics doctor who is knowledgable  and booked an appointment.  EDS is not well understood by the medical community, as it is complex and there is no real treatment or known cure as of yet.  That means there's really no money in it, so not many doctors invest the time and energy to learn much about it and treat EDS patients.  (Sad, isn't it?)  Despite these challenges, I had to know if this could be the cause of my health problems, so I could at least understand what is going on in my body and try to prevent further injuring it.  I set out to find out who could rule out or diagnose this condition in me, locally.  A local Facebook Group in my area was very helpful in finding resources near me.

In order to be properly diagnosed by an EDS knowledgeable genetics doctor, one must:

1. Discuss family health history, 
2. Have this doctor examine you for certain physical traits and characteristic reactions, 
3. Perform a certain set of specific physical tests in front of the doctor, so he can assess the Beighton Score for hypermobility, and finally, 
4. It may also be recommended to have genetic testing done to rule out or identify certain types of EDS.

Once the several months of waiting for my appointment passed, I finally went to see a local EDS knowledgable genetics doctor and did all of the above.  Everything points to EDS, and the Beighton Score, along with the genetic testing, pointed specifically toward the Hypermobility Type of EDS.  Thankfully, this is not one of the more severe and life-threatening types, but it can still be debilitating.  Unfortunately, debilitating is where I seem to be headed now.  I'm not sure if it's just my age or what I've been going through, but something has caused my body to take things to the next level of awful this past year or so.

Recently, I've been rolling my ankle just walking on flat sidewalk (couple times!), I've had painful shoulder tendinitis that required over weeks of physical therapy to strengthen, I have been having new problems in my hip that make bearing weight excruciating after a period of sitting, and my knees, which have always had a tendency to buckle painfully, are acting up more these days.

I've also been reacting with flushing for no apparent reason and developed new sensitivities to Hydrocodone and Xylitol, in addition to the new food allergy to apples that I've developed in recent years, and the new lip balm reactions I have had as well.

Now that I know what's going on, I needed to understand it.  I have recently been having an awful flare up that's been affecting my neck and shoulder, back, and knees for the past week plus now.  It's been a pretty high level of pain much of the time, and is apparently not being well managed by the Cyclobenzaprine and Low Dose Naltrexone (LDN), which has been helpful in lowering my "new normal" pain levels and giving me more good days between flare ups.  These flare ups, however, are terrible lately.  I have been laid up for several days, including last Saturday, just trying to rest up and heat the affected area.  All it takes is a few days of level 8 pain to make you wonder how you can go on.  I have had to keep talking myself down to get through it.

In my current, painful state, I did some quick research on my newest, and most important diagnosis. I found this page, EDS-H & JHS: Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome to be very informative and an excellent resource for understanding how all the little diagnoses I have collected throughout my life are all tied to the connective tissue disorder, Ehlers-Danlos.

I'll try to sum up what I know now, but if you or your child or children are hypermobile, you may want to read the above web page as well to see if you relate to other details. 

Okay, here goes...

Collagen is the connective tissue "glue" that holds our bodies together. When this connective tissue is defective and weak, as it is for EDS patients like me, joints can overextend (hypermobility) and less unstable than normal people's joints. When joints hyperextend, dislocations and subluxations (not quite full dislocations) can occur. When joints sublux or dislocate, the surrounding, and already weak tissues (muscle, tendons, muscle fascia, etc.), become overstretched, and can tear and stiffen as they attempt to repair the damage. All of this spells pain, in many ways, at the very least, plus various other problems in the body. For this reason, EDS patients need to protect their loose joints with various braces and limited activities. This explains my several ankle rolls and foot tendonitis, shoulder tendonitis, and carpal tunnel pains. It also explains how that car accident in 2006 triggered a world of hurt in me that never got better, but rather snowballed to where I am now.

When movements and activities lead to these painful and destructive episodes, those movements and activities tend to be avoided - have never been athletic - leading to weakened (doughy) muscles. Weak muscles can further destabilize joints, continuing in a vicious circle of pain and destruction. This explains my chronic pain and flare ups.

Weak connective tissue manifests many ways, such as Fibromyalgia, a syndrome that describes chronic pain, fatigue, sleep disorder, Irritable Bowel Syndrome (IBS), Migraines, Temporomandibular Joint Disorder (TMJD), allergies and various sensitivities, and lots of other odd little things that make my life extra challenging.

EDS is associated with 2 other conditions that are frequently comorbid: Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Mast Cell Activation Syndrome (MCAS), has to do with histamine and allergies and sensitivities. Basically, any kind of physical reaction that can occur as a result of any kind trigger is fair game. For me, this explains my hay fever and allergies to tree pollen, weed pollen, grass pollen, dust, dust mites, feathers, animal danders, mold, fragrances, newspapers, apples, lip balms, nickel, scratches, pressure, Hydrocodone, sudden temperature changes, and who knows what else. My reactions include rhinitis (sniffling, sneezing, and nasal congestion), asthma (cat dander, mold, dust mites, fragrances), digestive cramping and dumping (apples, hydrocodone, and unidentified triggers), hives (Dermatographia from scratches, Delayed Pressure Urticaria from pressure), dermatitis (lip balms and nickel), and flushing red and burning skin (sudden temperature changes and unidentified triggers). A lot of "masties" may suffer anaphylaxis when exposed to some of their triggers. I have had a few episodes myself in the doctors office after a slightly too high incremental increase in my desensitization injections, and have had to do the Epi-pen and inhaler thing. It was quite a production!

The other comorbid condition is Postural Orthostatic Tachycardia Syndrome (POTS), a type of Dysautonomia, which has to do with blood pressure changes, heart rate changes, heart arrhythmias, and fainting or near fainting, that is triggered by one's change in posture. This is due to blood pooling at lower areas of the body rather than circulating more reliably throughout the body. It goes back to weak connective tissue causing weak blood vessels and heart tissue, which, in turn, results in poor circulation of blood in the body and brain. This explains my momentary blindness and dizziness when getting up quickly, my unexplained heart rhythm (tachycardia) episodes - the first one triggered by my bending down to pick something up at age 17 lasted hours and I had to go to ER - and an apparent heart rate change when I squat for a couple minutes then stand up straight, as a specialist tested. I also get migraines, which are caused by a decrease in pressure in blood vessels, which makes sense here.

Some types of EDS affect internal organs and can lead to weakened arteries and digestive tract organs, which can rupture. Vascular type is particularly dangerous, but there are 13 types of EDS and several of them carry serious health risks. Hypermobility type is what I have been diagnosed with, though many of the 13 types also present with hypermobile joints. Genetic testing helps rule out or diagnose the types which have identified genes. EDS is inherited and it is usually the same type that runs in families.

The gene for Hypermobility Type has not yet been identified, so testing is done to rule out the other types, which is how I was diagnosed, along with family history and a clinical Beighton Score test for hypermobility.

This turned out to be way longer than I expected it to be, but I hope it helps someone make sense of their symptoms or lead to a correct diagnosis and proper care. Please feel free to share with others. EDS is not as rare as it seems. Doctors and patients need to know more about it so people can get the care they need and patients can arm themselves with knowledge against unnecessary injury and pain.

If you or your kids are hypermobile, please learn more about EDS and pay attention to these seemingly unrelated conditions and symptoms. There is a tie in!

When symptoms don't seem to connect, think connective tissue!

Abandoned Fibro Blogs

I just unsubscribed from over a dozen blogs written by fibromyalgia sufferers about their lives with fibromyalgia. All of them have not published a post in over a thousand days. Nothing. Where did they all go?

Several years back, around the time of the great Facebook revolution, I did a brief stint on Twitter. While there, I found a group of fellow fibromites and some of them had blogs. We subscribed to each other's blogs and created our own, (myself included,) exchanging stories and insights about our many challenges. We wrote frequently back then, as there was a lot we had to say.

Maybe it's all been said now. I feel like I'm caught up on all the nuances of this fibro life, yet I still look for news and different perspectives here and there. Once in a great while, I share my own.

This has become clear recently while reviewing my Facebook Memories from years past. I used to post about my pains and health challenges, and sometimes my health victories. Now, I feel I don't want to bore or annoy my Facebook friends with the tedium of my particular collection of health problems. They may not understand what it's like to live like this, but maybe they don't need to.

I have learned that most everyone has their own set of problems. Would I want to read about them all? Wouldn't I start to see certain people as their most frequent complaints? This is not how I want people to see me. I am a person with interests and convictions. I look for opportunities to be more interesting. I am trying to live life.

Hopefully the lost fibro bloggers are all out living their lives and trying not to wallow in their pain. Although I know blogging is a good outlet for dealing with the struggles of living with an invisible illness, I know it can have the unfortunate consequence of limiting one's ability to move beyond that focus.

Today, my advice is to try to forget the bad and focus on the good, the positive. What can you do? What can you enjoy. Be a whole person.

A Long, Long Year, and a Poem

It's been a long, and difficult spring and summer for my husband and me. He has Crohn's, as many of you know, and it has turned his life upside down, starting with an intestinal obstruction with micro-perforation that occurred in mid-March, and resulted in an emergency ileostomy that was supposed to be reversed after 3 months. Since then, it's been one complication after another. He is still dealing with the problems we never knew about until all this happened.

However, as he nears his reconnection surgery date, we have been trying to get his weight and strength back up, and one of the things we have been doing is walking every day. Those walks inspired this poem. I hope you enjoy it.

The Same Old Path by Benia Zouras

Reflections on the Table

As the new year begins again, I reflect on last year's resolutions. I managed to get a couple of them done. (Hooray!) However, I piled on too much for myself, which is typical of me, and have a bunch of incomplete goals.  I'm not going to beat myself up about it, because I learned that it's okay.  I did make progress on all of the other ones, which is the whole point of setting goals.  This year, I'm giving higher priority to the old resolutions, with modifications, and see if I can do as well and manage to cross something off in a dozen months, even if I won't be able to cross all of them off.  Progress is progress and I will take it.

Well, winter is definitely on, here in the midwest.  It has been snowing and snowing! Plus we had that crazy "polar vortex" deep freeze a couple weeks back that kept me and many others home from work for a couple days. Knowing how the cold always exacerbates my symptoms, my dear husband has been dutifully shoveling the driveway and sidewalks all winter, without my help.  Thanks, Don!  I very much appreciate it!  

Despite my trying to stay warm, I have had a bit of a setback this week with a flare up that started a couple days ago. My back is apparently very angry that I exercised and kept working all week, so yesterday, it spasmed, painfully, all afternoon and all evening and through the night.  I woke up this morning unable to get up from bed for quite a long time, as the pain in my back raged on.  I knew I'd have to get up eventually, though, so I made my way to my heating pad, which helped.

It's incredibly frustrating to keep trying to be healthy and productive while the Chronic Myofascial Pain and Fibromyalgia keep conspiring to knock me down and punish me for it.  Like many other fibromites, I feel the better days that come along between flare ups can be both a blessing and a curse. The blessing is feeling less pain and feeling less miserable, but the curse is that we all seem to do too much on these good days, because it's our best chance at getting things done.  Then we crash hard because we overdid it.  But, I need to remember that I will have better days and I will have worse days, and it may not make any sense when they occur.  I do what I can to help minimize the worse days and plan for special occasions, but fibro doesn't care. I am still learning to accept that.

Moving on...

I find I'm feeling a little less willing to share my life's details here lately.  It's great to get things off my chest or share things I've learned, but sometimes I guess I just feel more private about things.  Hopefully that's okay with you.  I can't put my finger on it exactly, but it's just how I'm feeling. I have been playing with the idea of perhaps closing up the shop here and ending the blog altogether.  That seems a bit wrong of me, though, especially since I have been such a big proponent of blogging and journaling for anyone with chronic health issues.  

It's good to put things into words, you know?  And whether that occurs online, in a private email to a friend, or in a journal, or even just phrased in the mind, I have found answers to confounding questions, time after time, the very moment I finish phrasing the question.  Has this happened to you?  

For instance, I'll be racking my brain all day about, say, the name of an actor I saw in a commercial or something. After hours and hours of hoping for the answer to come to me, I finally ask someone else and BAM! As soon as I hear myself ask the question out loud, the correct answer pops right into my head. It happens at home and it happens at work.  At work, I have had the answer come to me after phrasing an email just right.  Many times, the email never has to be sent, because I figure it out once I just phrase the question right. I do hate to ask for help, which is why I'm glad I figured out this magical answer-finding tip. 

Anyway, getting back to my possibly quitting the blogging... I wonder who reads my words and if they help anyone. It's okay if this is all just a cathartic public journal for me, too, but I guess if I'd be missed, I might try harder to keep things going. I won't commit to anything today, but it's on my mind.  I have subscribed to many blogs over the years and have noticed that some just... stop. There is no good-bye, no warning, no indication that the author intended to quit or if the choice was made for him/her.  I wonder if those authors are okay.  Most of them just get busy, I know, and that's fine.  The blogging is an enhancement to the rest of their lives, which should take a higher priority.  I guess because I'm aware of how it feels to be a reader of a blog that just dies, I wanted to address the topic while I was still writing, in case I do decide to quit.

Like I said, I 'm still here and I will still attempt to post tidbits of knowledge and experience as they come to me, but if I'm not around for a while, just know I'm exercising my right to change things in my life to make it better for myself.  Stay warm!!

Changes for Better Sleep with Fibromyalgia

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

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

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

Medications & Supplements

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

Caffeine

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

Food

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

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

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

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

Sleeping Positions

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

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

Stress and Asking for Help

Work stress and physical Fibro stress.

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

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

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

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

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

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

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

My Life at Forty

Ahh, life.  What is life?  It's consciousness, the ability to use energy and do things.  It's about choices as well as things that just kinda happen.  Some of my experiences are the results of my choices or the choices of others.  Some things also just happen.  Sometimes it's fun and happy; other times, not so much.

I turned 40 earlier this month.  I never used to care about age or understand why some people lie about their age.  "It's just a number," I would say to people.  30 was no big deal.  I felt fine with being a thirty-year-old.  It was just another birthday, though I do remember having a small party to celebrate it.  I suppose it was an excuse to to have a celebration and enjoy some pizza and cake with people.  Oh, and drinks.  Many, many drinks.  It was a good time.  I eased into adulthood, perhaps happy to leave the immature twenties behind.

In the weeks leading up to my 40th birthday, however, I kind of felt something new.  I kind of kept reflecting upon my age, my health, my death.  Will I live another 40 years?  Is this really the middle of my life?  The past forty years seem to have been short - will the next forty also feel short, or even shorter? 

I'm still not much for lying about age or denying it to myself.  I am facing these thoughts, mostly out loud to my husband, who turned 40 last year.  It's weird how I never anticipated this birthday being much more than some random milestone assigned by society.  I'm starting to get what those "Over the Hill" birthday party favors and gag gifts are about.  It's a way for everyone to acknowledge these feelings, but tempered with some humor.  I suppose celebrating birthdays with people both older and younger than yourself is really the right way to do it.  The older folks have gone through it already themselves, and survived!  That's encouraging.  The younger folks remind me of my younger days, not expecting to know what reaching older ages is like, both physically and mentally. 

Now that I've been "wearing" 40 for a few weeks, it seems to be less scary.  I still have to face the facts that I am now in a new age group.  Mammograms, colonoscopies, and bifocals are surely lining up for me in the near future.  I've had a few mammograms already - and yeah, OUCH - they are not fun.  But assuming the results keep coming back negative for any abnormalities, I'm okay with that. 

I came close to getting a colonoscopy back when my IBS was flaring up over several months, but as luck would have it, my awesome GI gave me a new medication that actually worked and we canceled the exam.  I am also aware of the process, as my husband has had several colonoscopies, due to his Crohn's disease.  It's not fun, lasts longer than a mammogram, and is pretty inconvenient, too.  Still, I can get through that.  I also have had an endoscopy done, if that counts for anything.

As for bifocals, I'm already nearsighted since high school, and usually opt for contact lenses to correct my distance vision.  Since that car accident in 2006, though, my vision has changed in several ways, and continues to change rather frequently.  I already notice my very near vision has become blurry, making reading fine print challenging.  Again, though, perhaps a prescription change is not so terrible.  I've been managing corrective lenses thus far.  I can probably handle that.  I guess.

So, these are not so scary.  Aging gracefully may still be an option for me.  Many folks make it to 80 and 90 in relatively good health.  With lifelong conditions like Fibromyalgia, Chronic Myofascial Pain, and Asthma, I understand I have additional challenges, but I also understand that being as fit as I can be is the key to empowering me with the best health I can achieve.  I know that eating healthy and staying active goes a long way toward preserving good health, so I will strive to do those things.

Some other recent events have also caused me to reflect on my age and mortality. 

Near the end of the workday on my 40th birthday, my husband suffered a severe kidney stone attack.  The stone was 6.5mm across and was stuck very near the left kidney.  I'll spare you the details, but life was miserable for him for several weeks thanks to this surprise.  We had to cancel my birthday party, and he felt bad about that, but I wanted him to feel better and stay close to home in case of any complications.  He's passed some of it and is feeling much better now, finally.

I also recently learned that my mother-in-law had suffered a stroke.  This was not her first, but it seems more serious that the one she had before I met her.  Although she was told that one side of her body will not recover this time, I am hoping that she can beat the odds and regain some function and sensation that was lost.  Thank goodness it was not her dominant side and she can still do some things.  I'm also glad that she can talk and remember us all. 

As we approach the year 2013, I have listed a few new resolutions (which I never used to do until 2012) that take into consideration my age, my health, my family, and my wants and needs.  I wish to be more responsible with my own health, as an investment of my old age as well as to help relieve others of the need to worry about me.  This includes considering making decisions and arrangements for what will happen to my remains when I die.  I feel it's the responsible thing to do. 

When life manages to give me warnings, I strive to make the most of it, whether it's through me or others, and learn something from it.  I won't live my life sheltered, but I will not live recklessly if I can help it.

Take care and do pay attention to your own body and look for the warning signs that could help keep you healthy and young at heart.  I hope the next year brings you closer to your personal goals and opens your eyes to wonderful opportunities! 

Ulnar Nerve Pain in Right Wrist?

I did some digging on the web to try to find out more about what's going on with the lightning pains I've been having lately.  I decided to start with seeing if I could find out the name of the forearm nerve that seems to be firing a lot.  While researching and experiencing some pain, I made a point to try to notice where I instinctively grab my arm and try to rub the pain out.  It turns out, the pain occurs on the  inner forearm, near the wrist, on the pinky side of the arm.  I always assumed it was the middle, but it's off to the edge a bit.

From what I'm seeing, this is the ulnar nerve, which is frequently associated with a condition called "tennis elbow", since it runs up to the elbow.  There's a great picture of the ulnar nerve's location here.

Something that occurred to me while doing this specific research is that I have a strange propensity and compulsion to bend my right wrist into its full range of motion to "pop" the joint.  My right wrist makes about 3-4 pops per... I dunno, per cracking instance?... each time I do it.  The left one does not crack at all, even if I try.  I was aware that I habitually do this, but I never thought it might be related to the nerve pain.

Most of the joints on my body have a lot of frequent cracking properties, especially my neck and ankles, and though I don't crack my knuckles, they would if I tried.  Going down stairs is when my ankles go to town.  I'm a walking bowl of Rice Krispies when I go down to the kitchen in the mornings.  I cannot help it.  They just pop and crack every couple of steps, over and over again.  I do not know why this is, but it's been going on for many years now.

Having established a hypothesis about my cracking wrist being related to the nerve pain, I naturally wondered if I may be causing or contributing to my nerve problem.  They are in the same location, so it seems plausible.  Bending my wrist may cause the nerve to move or get trapped or something, I figure.  Anyway, I decided I should try to avoid snapping this joint to see if it lessens the frequency of the nerve zaps in my right forearm.  I feel I may be onto something.

Cracking my right wrist is one of those things that I do subconsciously but have always underestimated just how frequently I actually do it.  It may even be tic-like behavior.  Now that I'm trying to catch myself doing it, or better yet, before doing it, I've realized that I do it a lot more frequently than I thought.  I have caught myself about to do it about five times before noon today.  I don't think I've actually managed to crack it yet today, but if I did, that's even more instances that I did not manage to notice or prevent.

This is a highly speculative experiment on my part, but since there is probably no risk to trying to quit this habit, I think it's safe for me to find out if it helps.  If this seems helpful, I may go on a quest to try to avoid cracking the rest of my joints, if I can.  The yoga poses may be helpful in strengthening my joints, if that makes any difference.  I'll report my findings after giving this a good trial, perhaps a month from today.

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.

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!

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!

Stressing and Pacing with FMS

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

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

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

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

Exciting, New Flavors of Pain

First off, I'm happy to report that my bout of food poisoning has finally subsided.  :)

After being in constant and varying Fibromyalgia (FMS) & Chronic Myofascial (CMP) pain for almost 5 years now, I'm surprised to find that I'm still experiencing some new, unfamiliar pains.

Having declared (only recently) that I have finally graduated to the final stage of grief - acceptance of my chronic illnesses - I thought I'd figured out how my new, broken body works to some degree. Sure, it's still unpredictable, but understanding the unpredictability kind of helps it be more predictably unpredictable. Words fail me, but I hope you know what I mean. Come to think of it, since Fibro Fog is part of the new me, perhaps these pains aren't really new. Perhaps they are just pains I've had but don't recognize this time around. Perhaps I'd experienced these pains earlier, but I was too new at this chronic illness thing and didn't quite understand what it was. Heck, I'm not sure now, but I have a hunch it's got something to do with FMS or CMP.

At any rate, I'll try to describe how these weird pains feel...

Last night, I was sitting on the couch with Don, enjoying some evening TV. Suddenly, out of nowhere, my lower left pelvic region felt like shards of glass were trying to break through my abdomen to run around the house, screaming. It was abrupt and made me "ow!" out loud, confusing Don as to what he might have done this time. I reassured him that it was nothing he'd done and felt it again. It was odd. I was happy to find that it settled back in and left me alone for the rest of of the night.

Today, I started my day feeling like I'd been run over by a Mack truck, but I still don't know why. I slept, dreamt, and don't remember exerting myself too much lately. (Although who knows what my thresholds are these days?) Eventually, I crawled into the shower and spent far too long trying to make the peppermint Dr. Bronner's soap wake me up or something, I guess. I got ready and drove myself to work. Getting out of the car was challenging, after having stiffened up during the drive (about a half-hour). I walked toward the building feeling sore in every last muscle from my butt down. Interesting, but nothing too unusual. Soreness is a fact of life for me now, even when I don't know exactly what I did to earn it. A few hours later, though, after going about my business at the office, I noticed my neck and shoulders got extremely tight and sore. My back hurts a little oddly too. It's like some package of misfortune has descended upon my upper body. What the heck? I try not to take too many as-needed meds if I can help it, but this seemed to warrant a muscle relaxant.

I'm still experiencing this high-level and sudden shoulder/neck stiffness and pain right now, and the legs are still sore when I walk. What happened? Was it something I did? More importantly, what's next??

I'm due for a vacation soon. Don has become wary of planning excursions with me lately, since he never knows if I'll be up to enjoying things with him, or if he'll end up having to try to enjoy something without me. I am convinced that if I am "on vacation" and not worrying about the usual stuff, my body will be more cooperative and let me have some fun without making me crash. I definitely won't be running marathons or anything crazy, but I think being pleasantly distracted helps keep stress levels down, which in turn, helps to keep my body processing working a little better than usual.

Cross your fingers for me!

The "Baby Steps" Workout

I just did 6 wall push-ups and 6 sit-ups.  This is week 6 of my "Baby Steps" workout regimen.  Each week, I add one more incremental wall push-up and sit-up to my daily quota.  This way, I don't overdo it, my body can handle the very gradual change, and I get to enjoy the (eventual) benefits of doing mild, muscle-building exercise on a daily basis.

Back in "the before time" (before I had Fibromyalgia) I started this workout regimen for myself to build up my strength and stamina, little by little.  I did regular, floor push-ups instead of wall push-ups back then, too.  I got as far as 22 per day in 22 weeks and was so proud of myself for being able to do 22 push-ups at once!  Then I got an awful flu bug that made me violently ill and made me lose 10 pounds of water in one week.  It was not fun, to say the least.  Needless to say, I was unable to continue my workout routine during my week of constant fluid expulsions from various orifices.  My gradual return to health after that week also was not inspiring me to get back on the wagon so I had essentially quit and forgot about it all while recovering... until now.

I've been especially ill for the past 5 months now with what today appears to be gastritis and biliary dyskinesia, along with daily headaches on top of the bellyaches, bloating, cramps, and general discomfort.  I have spent many days home from work, vegetating in bed or on my easy chair ("the nest" as Don likes to call it), trying to gain some comfort or distract myself from my symptoms with journaling, reading books, watching television, or playing computer games or blog reading.  I have also been very unhappy with my recent thirty-pound weight gain and all the problems associated with that.  While lamenting that I was stuck between a rock and a hard place about being unable to lose weight or exercise for my own good, it finally came to me that I had already invented a great way for a Fibromite like myself to sneak in something good without upsetting my body too much and causing a flare-up.  I'm a genius!

So, with some minor adjustments from my original version, I am back on the slow, rickety, but reliable (little red) wagon (being pulled by a baby goat) of gaining back lost muscle mass, losing some weight by burning calories and increasing my metabolism, feeling a daily sense of accomplishment and progress, and looking forward to less frequent flares, better tolerance for activity, and reducing stress.  Although it will be a slow journey to reach these goals, I am determined to remember the lesson I learned the first time around and make sure I stick to the program no matter how I'm feeling.  It's a relatively small amount of time and effort, especially in the first week, so I know I'd feel much worse if I were to skip.  (How lame would I be to determine I can't do one single wall push-up and one single sit-up today, right?)  

So, I'm very proud to report that I've accomplished 5 full weeks of daily baby steps workouts, in addition to any other exercises I might happen to squeeze into my day while I'm feeling up to it, like walks and climbing stairs and doing chores.  I'm not going to fall off THIS wagon, damn it!  That would be so, so lame of me.  I will continue and just enjoy the slow, scenic route to feeling better.

The Vicious Circle of Rare Disease Diagnosis

Warning: I need to rant a bit here.

When you have been diagnosed with a multitude of health conditions that includes Fibromyalgia Syndrome, as I have, you may find the need to dig deeper and see if there is a more reasonable diagnosis lurking behind the myriad symptoms - something that ties at least some of the symptoms together and makes more sense.

After being diagnosed with Fibro in February of 2008, I thought I would find some relief, thinking "okay, we know what this is, now we can treat it." Today, almost three years later, I'm not feeling much relief. Although having some diagnosis for all the things that seem to be malfunctioning in my body was at first comforting, I have realized some things.

Fibromyalgia is merely the name of a syndrome, which means it is merely a short way of naming a collection of symptoms that occur together. It isn't actually classified as a disease or condition. Saying one has Fibromyalgia is just a way of saying that a certain (long) list of non-fatal symptoms is occurring in the person's body. Having a doctor declare to me that I am experiencing a collection of symptoms is really not very helpful, really. Tell me something I didn't already know! There is no way to treat the core problem because the core problem is simply not yet known. Treatments currently focus on relieving whichever symptoms cause the most distress to the patient, and many are ineffective or only mildly helpful at best.

Many doctors tend to shy away from things they don't understand. The medical journals and conferences tell them what the official word is on how to diagnose and treat patients, and they tend to follow protocol. That's good much of the time, but sometimes this pattern is not very helpful to the patient. If it looks like a duck and sounds like a duck, it's probably not a horse, right? But when patients have symptoms that greatly affect the quality of their lives, they want a little more than standard protocol from their doctors. Why are we dealing with so many systemic problems? Why does the list of symptoms continue to grow despite our best efforts at improving them? Why does coping reasonably with these symptoms while still searching for real answers seem to spell "hypochondriac" to doctors who hear our best guesses for investigating conditions with similar symptoms and decide we aren't sick enough to pursue those tests?

Here's the thing. Once upon a time, all the health conditions that are known today were unidentified. Over the centuries, humans have observed and recorded health problems and treatments. When patterns emerged, conditions were named. As the collection of health conditions amassed, new, albeit rare, conditions began to be named and documented. You know the saying "there's a first time for everything" right? It's true for named health conditions, too. Every condition we know about today was once new... and rare.

We have always had a collection of rare health conditions. Only a very few of the patients seen have been diagnosed with these rare conditions. Some of them have become less rare as more was learned and diagnosing methods were narrowed down. Today, we still have a great many "rare" diseases and conditions out there. Statistically, very few people have been diagnosed with these conditions - but there are some out there.

So, when I ask a doctor to consider the possibility that I may have a certain health conditions and the reply is "no, it's not that; that's very rare," I propose that that reason for coming to a dead end on figuring me out is bullshit. Doctors: If you fail to test people for conditions, you will have contributed to the "rarity" of those conditions by reducing the statistics - the very reason you have provided to me for failing to pursue investigation of the possibility that such a condition could make sense of my problems.

Another reason I have been given was that if I had such a condition, I'd be much sicker than I am. Again, logic fails. Whatever happened to the great advice of getting diagnosed early for conditions, so it can be treated and possibly cured before it progresses to a point where nothing helps? If I'm "not sick enough" to be considered for a condition, does that mean that doctors don't want to diagnose early? Will they consider the condition if I wait until I suffer much more? Is this humane??

There are some diagnostic tests that cost a lot to do or require much more reasoning and thought and time to put together, and I suspect that these are the real obstacles I'm fighting. If this is the case, I'm thoroughly disgusted. I am trying to live my life as best as I can while dealing with at least a dozen symptoms at any given time. Meanwhile, I'm working to improve my quality of life and reduce the burdens on others by searching for meaningful reasons for my body's failings. I'm motivated to do the research, though my medical knowledge is greatly limited. I need the help of medical experts to find these answers, yet the true rarity in medicine today is a doctor who is actually willing to empathize and help me find those answers.

My plea to doctors is this. Don't dismiss my hypotheses with the rarity excuse and don't use cost or effort as a reason either. My body is breaking down and I need a better diagnosis than a syndrome. Cost and effort of investigation should not play a part in my health. I need more effective treatments and I want to know if defects in my DNA or blood or other body parts could be the missing link in what I'm experiencing. If you don't want to help me improve my health, I don't need you at all. If you don't know the answers, call on a colleague who might. Don't discard me. I'm a human being. I want to live well and I want others like me to live well. If you were the one in my place, would you approach things differently? Think about it.

Making Molehills out of Mountains

I've been dealing with many symptoms lately - some old, some new - and have been a bit run down.  I'm noticing little tasks and chores are piling up on me while I postpone them to rest or try to get comfortable for a while.  I have notes about various things I jotted down while away from the place where I need to do them, reminders about stuff I need to do when not in the middle of doing something else, etc.   The result is a mountain of undone stuff that stares at me every time I sit down at my desk full of papers.

This is about the time I remembered to jot down one more note for myself: "Do just one thing."  Rather than bemoaning the fact that I am so behind on my pile of chores, I am going to rejuvenate myself by picking one task and getting it done and off the heap.  If getting that one thing done creates a productive inertia and I am up to doing more, even better.  But the pressure is off for the session after the first task is done.  

Last night, after I put up the note to remind me to take my own, good advice, I filed a few documents that have piled up in my inbox at home.  It only took me about five minutes to do, but it felt great to finally get that task done.  Once that was done, I checked one of my to-do lists for something quick I could squeeze in before dinner and got that done, too.  Whoohoo!  How could I have forgotten one of my best ideas so easily?  Let's just blame Fibro Fog for that. ;)

When you're in pain, procrastinating a task or two is okay - to a point, but if it becomes a habit, your self-esteem can feed into a vicious cycle of feeling depressed and having more pain.  Conquer that depression by doing one, easy thing that's been nagging at you for a few days (or weeks).  You'll be surprised at how much better you will feel by having even one thing finally be done and off the list.