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!

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.  

How Many Spoons Does A Party Cost?

My husband and I hosted a party a little over a week ago. My husband did most of the work and I got loads of help from my in-laws as well, yet I am still paying the price of standing too long and handling the chores I had. My feet are apparently still very angry with me as I'm dealing with a mild, but long-lasting bout of Delayed Pressure Urticaria (DPU).

In the mornings, I feel pain on the bottoms of my feet even before I move to get out of bed. I dread those first steps in the mornings! I'm sleepy a lot more lately, too, and I'm still trying to stay active and stretch, and my muscles are still crabby both about the exercises I do (sore) as well as the ones I didn't do (stiff).

It seems wrong to flare for so long after a happy event, but such is the Fibro beast that is just never happy. Even resting for most of Sunday seems to have made no impact. Yesterday was trying as well, as I froze in an overly chilled office while trying to juggle several high-priority projects through nausea and dizziness that somehow seems related to the freezing air at my desk. It's 84 degrees out and I'm sitting indoors in a sweatshirt, hugging my warm coffee mug to try to warm up my painfully cold mousing hand. I may need to bring a blanket today.

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. ;)

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.

Move Around and Feel Better

I came across this article today.  It talks about what a huge difference it makes in the body to be sitting for hours on end vs. breaking up the sitting with standing and walking around every 20 minutes or so.  What I read there is right in line with what doctors everywhere have been nagging their patients to do: MOVE!

Yes, I know it hurts.  We are a sensitive bunch and we tire easily.  Believe me, I know! I also know that it's not as easy to do as it is to say, especially in the throes of a pain flare up; however, we must make a daily goal to use our muscles and circulate our blood, regardless of how good or poor our health is.  Fibro or not, movement is necessary!  I don't run any marathons and don't expect to, but I do try to make sure I do some sort of exercise each day, even if I'm hurting a lot.  (Stretching and yoga poses count!)

Below is my exercise log, if you'd like to see what I've been doing as an example.  Go ahead and flip through back to the beginning of the year and before, when I started logging my exercise.  See how far I've come.

I'm not perfect, but I do try, and it's important to try.  Keeping track keeps me motivated and helps me remember how far I've come.  (Note: On days where I ended up being too active to do exercise on purpose, I entered the exhausting activities in parentheses.)  Most days, I start with stretches my doctor gave me to do to help with hip pain/bursitis.  There are five different ones and I usually just pick one per day to quickly do before getting ready for work.  I've just recently decided to try to do two per day, if I can.  We'll see how that goes.  On work days, I also take the stairs half-way up to my floor (it's all I can do before my legs give out) in the morning and after lunch.  Every three days I try to do something more, like walking, yoga, or elliptical machine for at least 5 minutes.  As time goes by, I hope to make that minimum a little higher.  Again, baby steps...

Join the movement!  Don't shoot for the moon today, but do try to get some movement into your day and start as cautiously as you need to.

Weird Myofascial Knots, Flare-Up

Last week and even the week before, I had some very strange knots that appeared in my upper, right shoulder blade/back area.  They seemed to have spread havoc to many other areas, including my head, neck, back, and hips.  There were a few days of forced rest starting last week Sunday.  I am not sure what triggered this.  I seemed to have been doing great for many months now, mostly, until the Mirena installation in February.  Then I had a painful mammogram done in March that probably didn't help matters.  It seems a bit far-fetched that these two, painful but quick procedures could have ruined such a great run, but with Fibro, you can never tell what might lead to a flare-up.  Perhaps the weather and some other factors may have combined into a perfect storm or something.  I do still strive to eat more produce and choose healthy foods more often than indulgences.

Anyway, I've been using my TheraCane massager a lot, which seems to help ease the knots and referring pains a bit.  I also did some yoga at home to see if it would help, since it usually helped a lot when I went to yoga class with pains.  I had to take a couple of days off unpaid to rest last week, but I'm sure not driving and having to think about work was the right thing to do.  I'm due for my biweekly massage tomorrow.  Last time, there we so many awful lumps and knots along the right side of my back, I couldn't believe it, but it did explain all the pain and problems I'd been experiencing lately.

Oddly, I think the fibro fog is still affecting me, since I managed to make two mistakes that added a lot of unnecessary driving/car riding time both yesterday and the day before.  Nothing major, but stupid mistakes nonetheless.  Long car trips are a little tough on me because of the immobility, but I think the stress of the mistake was also contributing a bit to my pains.

I'm still doing my best to keep up the hip stretches, stair climbing, and other activity to help keep my muscles warm, loose, and healthy.  I'm a little frustrated though, that despite my climbing 4 floors of steps every work day, at least once a day, but usually twice a day, since early February is still all I can do at one time.  I expected to be able to progress and do 5 floors after a few weeks, but I still get very fatigued at the third floor, then push myself to do the fourth and final floor, sometimes stopping or going very slowly, just to make it.  I literally feel like I have used up all the energy available in my legs by the time I'm at the fourth floor up.

Another weird thing I notice while climbing stairs is that my mind frequently gets confused and I frequently almost miss a step but luckily hesitate to prevent falls.  Does this happen to other fibromites? I'm hanging onto the rails and going slowly, but every once in a while, it's like a skip or a glitch in my brain and I'm unsure what my foot will do and if I'll land the next step properly.  This is while I'm looking at the stairs because I cannot risk not looking.  I also don't go down on the stairs because my knees buckle too frequently.  I am on the disabled list at work to skip fire drills.  With an entire building of people rushing me, I would surely fall if I tried descending 8 floors of stairs.  On top of that, I can't risk a flare up from the stupid drill.  If my life was in danger, I'm sure I could manage to go down the steps because it would be worth a flare-up to survive, but for drills, I'm not risking a flare.

In other news, I've begun to revise my WRAP and the more I worked on it, the more I've been completely rethinking the structure of it.  When I'm done, I hope to have a simpler, easier to read format, but there is just so much information and detail that I keep getting stuck and making the revisions more sweeping, which is delaying the progress.  I've set a goal to get this done by the end of the year, but I've also set a lot of other goals for this year, so I don't want to arrive in December with a mad, impossible scramble to get things done.  That would be creating stress, and I'm not about that at all.  I do realize I've taken on a lot of goals, but I think it can be done.  If not, I'll have learned something about my abilities and scale things back for next year's goals.

The weather is finally looking more like Spring this weekend.  I hope you're all doing reasonably well and looking forward to some warmer weather.

One last note, if you donated to my friend's dental fund, THANK YOU!  You are wonderful for donating!  Also, if you shared a link to the campaign with your friends or readers, THANK YOU!  You are great to help someone in need.

If you haven't done either of these things, please consider doing one or both.  Do something nice for someone less fortunate.  Doing something nice for someone is therapeutic and can make you feel good.  I do what I can to help you all by sharing details about my life.  This is a great way for you all to pay it forward and feel good about helping my friend Dee (aka "Line") get her teeth fixed so she can eat.  Many chronic conditions, medications, stress, and poverty have caused her teeth to get loose or damaged and she is unable to eat much solid food, which is further hurting her overall health.  She's been through hell and it's not even over if she can get these teeth fixed.

Even a small contribution or even just sharing the link is really very helpful for her cause.  A donation of just one dollar is very much appreciated, and you can remain anonymous if you like.  You can also skip the fund and donate via PayPal if you have an account.  Here is a link to her GoFundMe campaign with all the details.  She's also updated with a few videos that explain her situation a bit.  I would be very grateful if you can show just a little love and do something for my dear friend, Dee.  Although she is very giving, she hates to ask for help, but this is really her last hope.  Please give it some thought and see if you can help her in any way.  Earn some good karma for yourself.  THANK YOU!

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.

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

Party's Over

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

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

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

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

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

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

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

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