Hear ye hear ye! May has just been declared as Ehlers-Danlos Syndrome Awareness Month in Illinois by our governor.

Some of us are diagnosed (I have Hypermobility Type, formerly known as Type 3), but there are many others who are not yet diagnosed.

This genetic and incurable condition affects all systems of all tissues in the body, and thus the symptoms are varied and unpredictable. We have many sensitivities and our tissues are fragile and we don't heal well. Many commonly used anesthetics are less effective for some of us and ineffective for others.

Doctors are currently not well trained to recognize this connective tissue disorder (or others) so we rarely get proper care and treatment, and insurance can be even more ignorant with their policies. We have wrongly been told by ignorant doctors that testing shows nothing is wrong, simply because these doctors don't know how to test or what to look for.

Please realize that we don't have the luxury of forgetting about this condition because we typically suffer multiple symptoms at any given time. Understandably, we may be moody,  frustrated, or depressed at any given time. We are trying to survive in this unfair world, basically taking care of ourselves and each other, since we frequently know more about EDS than many of our doctors. We read the studies, share experiences, and support each other as well as we can, just to make it on a daily basis.

We may look like healthy people on the outside, but our joints may easily subluxate or dislocate, causing painful injuries from the slightest movements, and sometimes from no movement at all. We get arthritis at an early age because of the additional wear and tear on our joints. We bruise easily and don't heal well. We suffer various digestive issues. We may have life-threatening allergic reactions due to mast cell instability. We have trouble regulating our blood pressure and body temperature and may feel faint or pass out from various triggers, and sometimes the triggers are unknown.

Please know that EDS is affecting me and quite possibly others you know and runs in families.

Please know that the stranger who is walking slowly ahead of you may be one of us, trying to get by without further injuring himself, even if he has no cane or brace. He is in pain. Do not hassle him if he has a handicap placard and is parked in a handicap spot. This disease is invisible.

Please know that when a coworker needs frequent time off it may be due to a flare up or injury that is causing myriad symptoms that prevent her from being able to live life for a while. Know that she is frequently unpaid for this time off after burning through all of her paid sick and vacation time. She is not enjoying these days off work; she is trying to let her body heal a bit until the pain levels are tolerable enough to work again. Know that she needs the income and insurance more than most, even though many of her specialists and treatments don't even accept insurance. She does not have a lot of options.

Know that when when a passenger next to you on the train or in an elevator is covering his face to protect himself from the fragrances in the air, it is because he is already dealing with plenty of symptoms, and that the fragrance causes instant migraine headaches, nausea, and lightheadedness and he needs to protect himself from these additional symptoms, especially if he is on his way to work and has to survive a full day, and is already at a stark disadvantage compared to many of his coworkers.

Please spread the word about this disease so doctors can catch up and be more helpful, or at least stop putting us in danger of further harm. You don't need to wear a zebra ribbon, but if you can share information and understanding with others, we can hope to get the medical attention and expertise we need to get by in this life.

For more information please visit The Ehlers-Danlos Society at https://www.ehlers-danlos.com/what-is-eds/ .

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!

Tell the FDA What You Need

A while back, I posted a comment to this article asking fibromites to share our experiences with Fibromyalgia with the FDA, in preparation for their upcoming four-hour discussion on December 10, 2013, in Maryland:  http://americannewsreport.com/nationalpainreport/fda-seeking-public-comments-fibromyalgia-8821990.html

After I commented I was contacted by the editor, Pat Anson, via email, asking me for more detail on my experience with Cyclobenzaprine, for another, related story.  That article was just published yesterday: http://americannewsreport.com/nationalpainreport/fibromyalgia-patients-take-drug-label-help-sleep-8822476.html

Please feel free to comment on either or both of these articles with your own experience with Fibromyalgia and treatments that may or may not have helped you.  The FDA is asking for our input and is ready to listen.  Even if you do not reside in the USA, your experiences are helpful in finding proper treatment.  

Be sure to mention what was most and least effective for you, including any details regarding any side effects, (like weight gain, dryness, mood changes, sleep issues, etc.) which are very important when attempting to treat a very symptom-heavy condition like Fibromyalgia.  Talk about the symptoms and side effects that are most bothersome and those that you find to be tolerable.  Include your thoughts on any supplements or herbal treatments you may have taken.  Share what you can.  This is your chance to be heard and inspire the focus for future Fibromyalgia treatments.

Stairs

Well, guess what I decided to do today.  This morning, during my usual 4 flights up the stairs in my office building, I thought perhaps I should try for that 5th flight and see how it goes.  Then I chickened out and just did the usual 4 and rode the elevator up the rest of the way to my floor.

That bugged me a little.  I started doing the 4 flights of stairs last February, when I was awarded a garage parking space that was near the stairwell for a full month.  I figured I'd make up the walk from the parking lot by going up some steps, even though I could only do about half the way up to my floor before my legs seized up.  It was a great habit that stuck with me even after my month of privileged parking was up.  It became stranger for me to NOT take the stairs than to just take them.  I have also read that it takes about a month to develop or quit a habit, so that makes sense that the habit stuck.  But I'd become frustrated in my limitations and not being able to progress as I expected to, over time.  Here it is, 7 months later, and I was still only going up 4 flights at a time.

Well, today, when lunchtime came, I took the stairs up to get back to work and just decided I would have to finally try to do 5 flights today.  I went slowly and took a break at 3 flights, then at 4.  Then I continued, finally, to the 5th.  Yay!  Then I took a break and just kept going.  Why not?  I rested a few seconds at each floor and kept going up until I made it to my floor on the 8th floor, which totals 9 flights (from the garage level).  I did it!  I am stronger than I gave myself credit!  Whoohoo!!!

That's all for now.  I'm doing things and watching how I'm able to handle things, pushing myself and taking breaks.  I was totally prepared to be wiped out after doing 5 flights today, and I was not too bad after 9.  I guess tomorrow might feel differently, but for now, I'm good with just enjoying the super feat I've accomplished.

I will definitely have to keep trying to do that 9 more regularly, starting tomorrow.

Where Does the Time Go with Fibromyalgia?

I have some things I want to shop for, like clothing and shoes. I also long to just browse at shops for ideas or for pleasure, like I used to. My to-do list has plenty of things on it and it keeps getting longer, it seems. These are tasks I seem never to be able to get to. I keep leaving it for another day, when I'm feeling up to it, but those days seldom seem to arrive. When I'm busy, I'm at work. When I need a break, I rest. My responsible pacing is at odds with my need for effective productivity.

I remember, once upon a time, when I could get up early, do a full day's work, exercise, do errands at lunch, and even do some shopping here and there, after work, or do some chores or enjoy some hobbies, make and eat dinner or go out with friends, relax, go to bed, get a good night's sleep and do it all over again the next day.  I could do it all and enjoy it!

These days, I drag myself out of bed much later, force myself to stretch a little, get to work later, grab lunch and eat at my desk, go home later in the evenings, collapse when I get home or make some sort of dinner, eat, look at Facebook for a few minutes, then head for bed and sleep as long as I can.  I definitely need more sleep now than I used to before FMS.  It also takes me longer to do everything, especially in the morning, because my body is so stiff and in pain.  I strive to keep up with the old me - the "normal" me, yet it seems I have a lot less time to get it all done.  Where does the time go?

My conclusion is that Fibromyalgia is sucking up the time and energy.

Yes, I blame the Fibrobeast.

It makes me move more slowly, think more slowly, and requires me to sleep more.

Plus, with pain and fatigue following me around with everything I do, I am not fully able to focus on what I do.  As a result, I have the additional burden of feeling crappy when I don't remember something or have to ask others to repeat what they said, or can't follow a story.  I try, I'm just at a distinct disadvantage here.  If you're a "normal", try to imagine focusing on a verbal explanation or story while a dog bites you in the leg.  Suddenly the story is not a priority, right?

I'm constantly trying to override the pain hierarchy while living my life.  It's not easy.  I'm actually surprised I can still hold down a job.  It's a pretty technical and abstract one, at that.  I definitely use a lot of energy keeping up with the workload and trying to ignore the physical hurdles every day.

Getting plenty of sleep is important for everyone, but especially for those with Fibromyalgia, because our brains don't let us reach all the deepest, rejuvenating stages of sleep.  The best we can do is hope for quantity and accept the poor quality of our sleep.  I have spent many a long night wide awake for several hours at a time while waiting for my brain to retire and let me sleep.  I've also had a few nights when sleep never came at all, and I was awake all night because I could not sleep, despite my exhaustion.

These days, I'm glad to report that I do sleep on most nights and sleep for most of the night.  The medicine I take also keeps me asleep longer, which is good, but takes more time from my day.  I guess I just wish I didn't feel like I'm always dragging myself through mud and pulling a huge boulder to get where I need to go and do what I need to do.

The lesson learned here is to lower my own expectations of what I can accomplish.  My daily "spoon" allotment has been lowered and I need to be more realistic about how many "spoons" it really takes for me to get through a day, and for each of my personal tasks to get done.  

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. ;)

That Fibromyalgia Study

If you haven't read or heard about the recent study that seems to prove Fibromyalgia is a physical disease, take a look...

http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/ (complete with pictures)

http://www.intidyn.com/Newsroom/article-0008.html

http://chronicfatigue.about.com/b/2013/07/02/too-many-nerves-new-pathology-discovered-in-fibromyalgia.htm

http://www.ncbi.nlm.nih.gov/pubmed/23691965?dopt=Citation

A friend found and shared the news about this with me on June 23rd (via the first link above).  To my knowledge, he is not a fibromite.   I was actually pretty surprised that I hadn't come across it myself, first.  I'm connected to several, reliable sources of information about Fibromyalgia.  Perhaps they all waited cautiously, as I did, to check it out before sharing it, and possibly spreading false hope.  Many FMS patients have been on an emotional rollercoaster with these kinds of studies and the approved medications that usually go with them.  As you probably know, it's not fun to get your hopes up, try new meds, then crash with horrible side effects, lack of intended effects, and even depression at having fallen for another one of Big Pharma's nasty tricks.

I take this news with some hope and definitely with grain of salt.  It's an interesting find and could be a very exciting discovery, and I have shared the news with others I know who have Fibromyalgia, but it's so easy to get carried away, hoping for a cure (again).  However, I look forward to a repeat study with more subjects, and hopefully more insight.  Only time will tell if there is anything for us patients to gain from this.

Keep studying, scientists!  We are relying on you.

Livin' La Vida Enferma

The life of a fibromite is riddled with setbacks.  And they always seem to be surprises, too.  You'd think I would expect the flare-ups and sick days, like today, but no.  I still have some crazy hope and idea that I'm able to overcome this lifelong condition.  Alas, I do realize that I am doomed to always live "the sick life".

Overall, I would still say I'm doing lots better than I was a few years back, especially in the early days, before and just after the official Chronic Myofascial Pain and Fibromyalgia diagnoses.  Back then, I did not know very much about these conditions, nor what affects them.  Today, six years after the incident that triggered it all, I have learned a lot about the conditions, the symptoms,  the treatments, and how my body behaves, including the flare-up triggers, and the things that seem to help me.  I now have a basis for maintaining some sort of basic, pseudo-normal lifestyle, complete with a full-time office job, marriage, vacations, hobbies, chores, and problems.  Although it's still very easy for me to forget how fragile that balance is.

Blame the fibrofog (which has really been oddly worse lately, or I'm more aware of it these days) or blame the hope I give myself when I see how much progress I've made with living with chronic health problems over the years.  I am frequently finding myself scratching my head over what caused the last flare-up.  Today is one of those times.

So, I've been doing my exercises, as you saw in the last post.  I've been eating lots of veggies, fruits, nuts, and good, healthy food.  I've been having my back massaged every couple of weeks to keep the tender points in check.  I've even taken a vacation recently to relieve stress.   Yet, here I am, with headache in my nose/face, aching in my bones, some more digestive issues, and fatigue.  Looking back, I remember complaining about a new pain that has crept up in my chest (I think Costochondritis), and the digestive stuff for a few weeks now, but I assumed that if I kept doing what I've been doing to stay healthy, that they would just pass quickly.  I guess the lesson learned today is that I cannot assume that in the future.  They are red flags that I need to remember to take seriously.

Knowing myself, I know I'll have to repeat this lesson.  It's extremely difficult for me to decide to stay home from work with so much going on there, just to try to stave off a flare, when I notice a slight worsening of my usual symptoms.  Yet, here I am, knowing that it's the right thing to do and paying the price (again) for deciding to push through the pain.  I think what I fear is never really knowing if a flare would have occurred if I ignored the signs.

For example, I noticed more IBS problems than usual have been occurring for the past few days.  Let's say I make the conscious decision to take a day off work to rest and treat the symptoms.  I feel better by that afternoon.  Then I feel guilty for staying home and not going to work.  But this is where that logic fails. Had I not taken the day off, I would find myself at work, trying to subtly attend to my IBS symptoms between meetings and obligations, stressing, rushing, and making things worse, which would eventually trigger a flare-up of more Fibromyalgia symptoms.  I would not be maintaining my pleasant demeanor at the office, causing more stress from the damage to my work relationships (true story, by the way).  The next day, my body shuts down on me and I am forced to stay home because I cannot function.  Thus, today's predicament.

Damn this lunacy!  I know better and need to remember better.  I need to realize that admitting that I'm noticing a flare-up is not some kind of blow to my ego.  I am doing my best and sometimes it's not enough for the fibrobeast.  I just need to let go of that and do what I know is best: rest.

I've read so many articles and blog posts about this problem.  I will think about this more and hopefully plant a seed in my brain about being more aware about the delicate balance between being a high-functioning fibromite, and the Mack truck version of me.  I'll try to come up with something that will remind me of the right thing to do at the right time.

How are you handling your Fibro flares?  Are you reading this and nodding empathetically, or have you got a method that helps prevent disaster for you?  I'd love to read your comments on this topic.

The Fragile Balance of Activity

I'm finding myself ever entangled in the grasp of life's endless supply of tasks.  Why is there so much to do?  Is there, really?  Am I creating work where I don't need to?  Perhaps I'm giving in to my overly ambitious, Type-A personality and setting my goals too high.  That could mean I'm feeling better and more like a normal (Type-A) person than a sick person.  Yeah, that's it.  I'll take that as a good thing.  Yay me!

Anyway,  I just wanted to pop in here and let you know I'm still stretching, still exercising, still eating my yummy salads, still drinking water and homemade fruit smoothies, and still doing mostly better, overall.  However, I have recently had my body remind me that I'm still a fibromite, no matter how well I've been assimilating into society.  It can be easy to forget I'm not normal while maintaining at whatever level of pain management I can achieve.  

For example, I did just an hour or so of weeding and planting in my native garden last Saturday morning.  As soon as I finished and came back inside to clean up and rest, I realized all the pains I'd been ignoring to get the work done.  As a result, my body has been holding onto a grudge against me for 4 days now, as revenge for that hour of work.  I'm only today feeling some relief in my feet and lower back, but it's still not down to my usual level yet.  My hamstrings are still very tight.  Just leaning forward makes the soreness behind my knees escalate.  But I'll be okay.  I just have to get through this and remember the lesson for next time I'm tempted to ignore my good sense and overdo.

Here's an interesting observation related to overdoing: when I push myself and do about half an hour or so of moderate activity, my body isn't just tired and achy afterwards; I get really sleepy, regardless of the time of day.  I like to take 20- or 30-minute walks around the neighborhood in nicer weather, but afterwards - boom!  I'm sleepy and dead tired.  Much of Saturday after gardening was spent recuperating on the couch, a la sick day, watching television for distraction from the pain.

I'm hoping you are finding a balance between too much and too little activity.  It's been 6 years now and I'm still trying to figure out mine.  But hey, those who continue to learn things into adulthood remain forever young, right?  Keep learning.

Fibro Fog & Language Problems

I recently found this article that discusses fibro fog, specifically language problems.  I found it to be relevant because I am challenged at work by people who prefer face-to-face interactions or phone calls to my emails and texts.

Part of my job involves meaningful discussions with just about anyone else in my company.  Even if they could understand why I rely heavily on written communications, I don't think it's necessary for me to explain it to them all.  But when I hear myself talk in meetings sometimes, I have become painfully aware of how halting and imprecise I sound when I cannot find the appropriate words.  Even worse, it's distracting to me to have others tell me they cannot follow what I am saying.  Then I might lose my train of thought.
 As a compromise, when I need to discuss things with others, I find that starting to draft an email helps me figure out what I want to say, but then I make the phone call instead of emailing.  It doesn't help when unforeseen topics arise, but it's something.  Luckily I'm not easily embarrassed, so I keep pushing myself to be better despite the discomfort. It's a tough world out there sometimes, so I guess it's a good thing that I don't back down from challenges too easily.

Do you have these problems with words?  If so, what do you do to cope?

huh?

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.

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

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.

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

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!

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? 

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.