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!

Another Diagnosis

I saw my rheumatologist today. She confirmed that my finger bump is very likely the beginning of arthritis, and, unfortunately, there is no treatment to prevent or slow down the development.

I also went to visit my parents after the appointment, since they live near my doctor's office. My dad has arthritis, further supporting the likelihood that I will suffer the same fate. I looked at his hands. His finger joints have prominent double bumps on them, and he has trouble bending them. It's at least a slow condition to develop. 

I am hoping that if I continue to use and exercise my index finger - instead of adapting by using other fingers - that I can retain joint flexibility longer and maybe prevent the bony growth from obstructing mobility a bit longer. This is all speculation on my part. The doctor talked about a topical treatment to reduce inflammation. I still have plenty of Zostrix with capsaicin that I can use if it gets "angry".

I completely forgot to mention the eye twitch (Myokymia) today, but it's almost becoming a normal part of life now, it's been so many months now.

I am also going to try to wean off the one prescription medication that I take for FMS/CMP: Cyclobenzaprine. She suggested halving the dose for a few months and watching out for worsening pain or sleep, then halving again and watching out again, before finally stopping it. I'm going to see if I can do it, since the dry eyes and dry mouth are starting to really bug me lately, and it may also be aggravating my atrial tachycardia (heart palpitations). I notice the episodes tend to occur right when I wake up.

I'm proud to report that my doctor said she wishes all of her patients were like me. I'm glad I'm managing this all somehow.

Attitude is Everything

I recently visited wonderful rheumatologist, to follow up on my last visit.  Good news! My blood pressure is no longer ridiculously high.  The last time I had it measured was mid-October by my gynecologist, who ordered me off Seasonique because of estrogen contributing to the high blood pressure.  Back then, it was as high as 150/97 (the last and highest of 3 readings in that one visit).  Today, it's down to 125/87 (the second and lower of 2 readings today).  According to the wikipedia page on Blood Pressure, I moved from stage 1 Hypertension to Prehypertension.  I'm just one category away from normal.  Isn't that what we fibromites all strive for?  Normal?  I'm getting there.

My doctor was also very proud of my improvements in overall pain levels and lifestyle changes to be healthier.  I've been eating healthier foods and making sure I get some exercise in at least every couple of days.  I'm keeping up Yoga on Wednesdays and my Whole Foods salad lunch habit.  I've also added elliptical workouts (usually 15 or 30 minutes) and climbing stairs in the building where I work.  (4 floors, up is all I can do right now, but I'm pretty impressed anyway.)

Since my symptoms are mostly under control, she is keeping me on my nightly Cyclobenzaprine (Flexeril) for muscle relaxing and sleep, and leaving the rest up to me to control by living my life as well as I can.  Being on few medications is just the way I like it!

Although, I have been noticing some more heart rhythm issues lately, especially upon waking, and I did not realize until looking up the link just now that this medication warns about that.  I've had atrial tachycardia since I was a teenager, and episodes are usually short, but can last hours, and they can be slight or kind of scary feeling.  I wish I'd known before my last appointment, so I could ask the doctor about it.  I'll have to note that and give her a call to see what she says about it.  Every doctor I've seen about it pretty much shrugs and says some people just have this and they aren't sure why.  One cardiologist offered to fix it with a new heart surgery that would cut the electrical route that triggers the arrhythmia.  I don't feel it's enough of a concern to risk surgery, so I am just kind of dealing with it.

Because I still mentioned that my right hip gets stiff if I sit too long, she also asked me to do several hip stretches every day.  She gave me a printout with instructions for five different ones to do.  I have been adding them to my morning routine already.

Oddly, though, after bragging about how great I've been doing, I had a weird kink in my back, headaches, knee pain, and some minor digestion issues, plus tinnitus and a weird hour-long episode of partial deafness in my right ear.  Did I jinx myself?  At any rate, I think I may just be paying attention to many of the things that were called out during the appointment, and feeling just about average for me lately, if that makes any sense.  I do still deal with FMS and the unpredictable symptoms.  But, I'm not going to worry about it and just assume it's nothing unusual.  I'm on my way to feeling more normal and feeling more in control of my health these days.  YAY!  Attitude is everything!

Wanna jump for joy with me?  Well, if you're not up to it, you can just do a mental happy dance, if you like. 

I am Off Savella!

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

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

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

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

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

Weaning off Savella and a New Doctor Found

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

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

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

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

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

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

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

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

Hope things are going well for you all!

The Late Call Back as Weaning Continues

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

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

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

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

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

I'm Weaning Off Savella

With two calls into my fibro doctor and still no response, I've made the decision to wean off Savella.  I've also decided to fire my fibro doctor and find a different one to take care of me.  If you remember how my start with Savella went, you'll see why I'm not expecting much from him this time around.  I'm through with his nonsense.

After doing some drug interaction research after Monday's appointment, I learned that the Sinex nasal decongestant spray I've recently been taking doesn't play well with Savella.  According to drugs.com, there is a "moderately clinically significantly" interaction between these two drugs.  Here's the exact interaction wording:

Be careful with SNRIs and other drugs that can affect blood pressure and heart function!

As you can see above, there is a serious risk of blood pressure problems and pulse and warrants getting off Savella and SNRIs altogether, which is my current plan.  Again, I have learned all of this without any help from my fibro doctor.  My fibro doctor was the one who told me to try Sinex for the nasal congestion I mentioned during my last appointment.  What's more, he didn't tell me that it should not be used for more than just a few days - this I learned from my primary care doctor on Monday.  I'd been taking it for a couple of weeks.  This is the last straw.  I can't trust him.

Knowing all this now, it is not much of a surprise to me that I am feeling some relief after having stopped taking Sinex since Monday's appointment, and having skipped my first dose of Savella last night.  My head feels much better today and I actually slept for a change!

Thanks to others who have had to wean off SNRIs and shared the experience online, I have developed a month-long plan to wean off Savella.

The full regular dose of Savella is one 50mg tablet, twice a day, resulting in a 100mg per day dosage.  Starting last night, I will eliminate my bedtime tablet each day for two weeks, resulting in a 50mg per day dosage.  Then I will eliminate one morning dose every two days for another two weeks, resulting in a 25mg per two-day dosage.  It's not perfect, but I'm hesitant about cutting the pills in half right now, as I have not been able to confirm that it's a safe thing to do.  One person reported a worsening of heart problems after taking a cut Savella pill and warned against it.  I will continue to look into this as necessary and watch for those odd withdrawal symptoms.  If withdrawal (or "discontinuation") symptoms become problematic, I will try increasing dosage a bit to reach a happy medium as my body adjusts.  (If you can point me to something about this on the web, please leave me a comment about it!)

With this plan worked out and symptoms seeming to calm down a bit now, I feel a bit more in control of my body's chaotic messages.  This is, of course, not to mention all the "usual" fibro symptoms and pains that I can't escape.  My hope is that, with fewer side effects complicating things, my fibro might be easier to manage.

Things are still stressful, though, because there is a lot going on at work as well as at home.  Lots of projects are coming fast and furious at work because the market is changing and it requires action.  As a member of my company's IT team, I get to be affected by all of these sudden and very urgent changes, even when they turn out to be reversed later due to new information.  It's already happened and it will happen again.  I just need to deal with that.  It's going to be a long year.

A family member's health, though, is also suddenly very poor, but we aren't exactly sure of the diagnosis yet.  He has his own chronic health problems, so the implications of his new symptoms are serious and worrisome.  I am doing my best to stay strong and take care of his needs while my health seems to stabilize, though I also don't know how my body will handle being off SNRIs long-term.

My schedule and fibro doesn't allow me to do much of what needs to be done at home, much less handle all these additional challenges.  I don't have much choice, though, but to try to keep calm and carry on, so that is what I must do.

I'm Blaming Savella

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

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

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

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

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

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

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

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

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

Stay tuned for more as things develop.

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

Feeling Lame

Sorry to be the bearer of bad news, yet again, but despite my best efforts, my sleep has been ridiculously scant and superficial for the past month, even when I use the new ear plugs.  I still like them for tuning out the noise, but apparently noise is not the only trigger that wakes me. 

For instance, the other night, I slept and dreamt, but woke up suddenly in the middle - well, at the apparent sudden END, I guess - of each dream, for no apparent reason.  No noise, no gasping for air, no falling or startle dream, nothing.  One second, in a creative story of my mind, next minute wide, fucking awake.  This must have happened about a hundred times that night. 

Each night is different, too.  Last night, for instance, I don't remember dreaming, but I slept for a few hours before my brain decided I shouldn't sleep for the rest of the night.  I woke up around 3am and finally got up after 4am to address some of the things popping into my mind.  I'm tired as all hell at the moment.  In fact, I left work early today because I couldn't function.  It's unseasonably warm today (60 degrees F for January in Chicagoland is very unusual) and that may or may not have anything to do with the fact that today my asthma has been the worst it's been in months, that I can recall.  I have been coughing and trying to breathe for hours, then noticed I was feeling faint, probably from the lack of oxygen getting to my brain. 

On top of that my face flushed up and felt like it was burning up (this is still about a daily occurrence) AND my nose started bleeding, right there in the office (another daily occurrence).  It was too much and I was starting to sense microsleeps occurring due to my sleep deficit.  I carefully drove home and I'm about to try and nap some of this crap away.  Savella is already making my heart beat way too fast and hard (100+ beats per minute at rest is not normal) but the rescue inhaler also makes me shakey and screw it up even more. 

In addition to the above, my lower back is having spasms for the past few days, despite my increased muscle relaxants, stretching, and a great massage treatment just yesterday.  However, the pain from that pales next to the nerve pain jolts I've been getting in the back of my right thigh for the past several days.  It's maddeningly sudden and severe every time. It makes me jump and/or gasp involuntarily, and I'm pretty good and not bringing attention to my pains in front of others.  I've been calling this sciatica, but really I don't know what it is.  I've been told my piriformis muscle is likely impinging on it, so I stretch when it occurs, to try to prevent further jolts.  It's difficult to say whether anything helps this - as it's so intermittent.  I get a similar pain in my forearm as well, and that's been acting up lately, too.

I wanted to write this all down while I'm feeling it so I can give my future self an accurate description of what went on today.  This is about all I can handle at the moment.  Stay tuned for an update of how great I'm feeling later (hopefully).  I will have better days.  I will have better days.  I will have better days...

Switching to Savella - Done?

Yesterday I felt relatively "normal" (for me) and I think the brain zaps are pretty much through with me, finally. I am still dealing with some odd sensations and discomfort, but after what I've been through, I've decided to try to keep looking forward and enjoy the progress I've made.

Although, to be honest, I have noticed I'm a bit cranky at work today. That could have nothing to do with the meds, though, as quite a few people on my team are missing and stuff is piling up and feeling a bit overwhelming. I'm doing my best to just pick something and do it so I can get it off my list. That's the best strategy I've ever been able to implement for dealing with having way too much on my plate. Just do one thing at a time until it's done and don't worry about the new things being added. A Benia's work is never done. ;)

I don't really want to admit this, but I have had some very minor nausea this morning. I grabbed one of my sugared ginger cubes from my stash and sucked on that for a bit, which helped. I have been nauseated for no apparent reason before the switch, so it could be nothing, but the top side effect of Savella mentioned by both my doctor and the medication information leaflet is nausea. Remembering how terrible the nausea was with Cymbalta, however, still makes me feel like this is going to be just fine.

Also, in the interest of full disclosure, I've been noticing some fast heartbeats and possible palpitations since starting on Savella. It's one of the possible side effects, but it was also possible with Pristiq, my old SNRI. I have been susceptible to tachycardia since I was a teenager, when I had my first scary episode, though no doctor could tell me why. It could be that Savella is exascerbating that now, but hopefully it won't last too long. The worst time is when I'm trying to sleep and I feel my heart just pounding away like a disco beat.

So, with this mostly behind me, I'm going to get my focus back on getting my tubby body back into some sort of shape. I'm trying to get back on my Baby Steps wagon, and have been trying new ways to strengthen my muscles - starting very slowly, of course. I felt some soreness in new places from the new exercises, which was a bit of a reward for me. I am also trying to get out in the sunshine and walk more, too, while summer's still here.

Hope these posts will help someone, either now or in the future!

UPDATE: See this important post as a follow-up to this withdrawal nightmare: https://xsarenkax.blogspot.com/2011/07/switching-to-savella-guess-who-called.html

My Fibromyalgia Story on Fibroduck's "Faces of Fibromyalgia" Blog

I submitted to Fibroduck a personal account of my transition from normal Benia to the Fibromite Benia I am today. It was published on the "Faces of Fibromyalgia" blog today.

Please click here to read my account.

To submit your story to the Fibroduck "Faces of Fibromyalgia" blog, please include a head and shoulders type photo of yourself and send an email to admin@fibroduck.com.

Week 8 of Baby Steps

I'm on week 8 of the Baby Steps workout routine and still making it, despite crazy fatigue and feeling blah.

  

Here is a photo of my little notes (along with some of my friends: Wellington the bear, Chiki the monkey, and "the Lion" who gets hidden by Don or me for the other one to find) that I posted on my bedroom mirror to remind me to do my exercises each day.  I add an increment each week, draw a large number, write the date range for the week on top, and just stick it on top of the others.  (Yes, it's getting thick.) 

I'm also noticing a few quirky things that may or may not have to do with my increasing my exercises.  

When I turn over in bed or try to get comfortable in a new position, once I settle, I notice I get these muscle twitches in my torso.  This is the first time I've been able to associate any of my muscle twitches to anything I've done or that happens to my body.  I still get the random twitches everywhere else - arm, eye, lip, leg, toe, butt - but when I am turning around and settling into the bed or the couch, I am now noticing that almost every time, I end up with muscle twitches that occur in the torso area, usually on the sides of my stomach.

Also, the heart palpitations are back.  I used to get very infrequent episodes of my heart pounding and beating incorrectly (tachycardia) that sometimes lasted for hours.  When I tried to capture an episode or two on a heart monitor I wore for a month last year, (after seeing a heart specialist for this,) nothing happened, so we don't know exactly what kind of issue is occurring.  However, over the years, I've had my heart checked out via ultrasound and even did a stress test and everything turned out okay, test-wise, so apparently these are benign episodes, though they can be very distracting and unsettling if they go on long.  

So what I'm noticing recently is that when I wake up or for no apparent reason sometimes, I notice my heart beating incorrectly and quickly for just a few seconds before returning to normal while I concentrate on breathing and focus on a normal heartbeat.  These are occurring daily or more frequently these days, and I'm not sure if it is coincidence, or perhaps my trying to increase my muscle mass is causing some sort of electrolyte or other chemical imbalance or something, due to the needs of my muscles.  Perhaps I'll do some research and see if a supplement can help me with this.

Another thing going on lately is lots of dizziness and feelings of presyncope, especially in the mornings and while moving my head or even just my eyes.   I get myself to work and step off the elevator to get to my desk.  All the while, each time I turn a corner, I feel like I might faint.  I've never fainted, so I don't know if there's any danger of actually fainting, but the feeling is there.  Needless to say, I'm not myself until my body settles down a bit and I can focus on other things.

At any rate, I'm still moving forward on my exercise goals.  Hopefully, once I get stronger, I'll have increased my metabolism and built up my endurance a bit.  Then I can get serious about losing some fat and maybe getting into some of my smaller pants sizes again.  Dare to dream...

What's Better with Me & Magnesium

We, chronically ill folks do a lot of focusing on the things that go wrong in our worlds.  I think it's time to address what's actually going right, despite my health problems.

Firstly, I've noticed that the tinnitus has improved recently.  My ears are not "ringing off the hook," as I like to say, the way they used to for weeks on end.  I had a very hard time hearing and concentrating with all that racket in my head.  I also worried, however illogical it may be, that the increasing instances and volume of the ringing meant that I would eventually progress into a single, solid, ring - deafness, essentially.  I would hate to miss out on all the great sounds I am able to hear now.  Having sustained a concussion, along with having Fibromyalgia, I'm not exactly certain why the tinnitus got so crazy, or why it's better for the moment. 

Next, my migraines have finally calmed down enough that I'd forgotten a bit about them.  Several weeks ago, they were coming and going so frequently I might just consider them one, long migraine with off and on pains.  I blamed them on weather changes, hormonal fluctuations, and some other factor that was the straw that broke the camel's back and triggered them.  

Another problem I'd been having for weeks on end is an underlying nausea.  I blamed the meds and supplements.  I take lots of both of them every day and can only imagine I have a bunch of little pills sitting around in my stomach after taking them.  I take my supplements right after breakfast, so they have a bit of a softer landing in my stomach, in the hopes that I won't be so nauseated.  Sometimes, though, I still have that awful feeling that I might have to vomit.  I've learned to recognize the "fake nausea" feeling - one that will not likely result in any vomiting - and distinguish it from the "real nausea" feeling - one that gets progressively worse until some vomiting is done.  The latter recently came with a terrible migraine headache, and I sure did puke from it!   

When I switched up my medications last February, it seemed the adjustment period affected many of my symptoms, including the quality and quantity of my sleep.  There were a couple of completely sleepless nights, and many nights of only half a night's sleep or less.  However, today, I feel that my sleep has finally improved for the past few weeks.  I'm taking Sonata instead of Ambien, because the Ambien seemed to keep me sleeping far too long in the mornings.  I could just blink and start dreaming in the mornings, but in the night I was still kind of wide awake until the drug kicked in.  With the Sonata, however, it seems the morning "hangover" is not a problem for me any more.  (Of course, this morning was an exception - I felt so sleepy, but I had a full night's sleep.)  My body is finally adjusting to all the medication changes and able to sleep.  It's lovely to be able to sleep again.

The pain in my upper back on the left side is finally starting to feel better, although I'm not quite through with it yet.  Each sneeze sets me back with excruciating pain that lasts several hours all over again, but after those episodes (I had one last night) I seem to be doing okay with it.  It's there, but it's diminished.  I'm still not sure if there is or was a crack in my ribs, but with my FM pain amplification, I wouldn't be too surprised if it was simply a minor muscle issue.  Perhaps a pulled muscle in a specific spot, between a couple ribs is causing this problem.  At any rate, it seems the treatment for either of these is pretty much a wait and see thing, especially if it's not an emergency situation.  I'll continue to wait and see on this.  Hopefully I won't be sneezing too much. For some reason I can't get away with a single day without at least one or two sneezes, but at least I'm not dealing with all the allergies or a cold, like my poor husband is right now.

I would like to claim that taking the Magnesium Malate twice a day is helping me with these and possibly other symptoms.  I've been on it for months now - perhaps it's finally making a difference.  I've been researching magnesium recently and there is a lot of relevant information about it, especially with relation to various health problems, including: Asthma, Migraines, Fibromyalgia, Diabetes, various heart problems, high blood pressure, Epilepsy, Autism, ADD & ADHD, various digestive disorders (including IBS and Crohn's Disease), Multiple Sclerosis, and Premenstrual Syndrome.  

I can only wonder why magnesium supplements are not the first order of treatment for all these health conditions!

My guilty pleasure, a daily spoonful (or so) of natural peanut butter is also adding to my magnesium intake as well, along with a healthy fat to help my body absorb it, too.  I also like olives and olive oil, avocados, and salmon, which also contain healthy (unsaturated) fats.

Certain conditions deplete magnesium in the body, causing a deficiency and further problems.  Calcium supplements usually include some magnesium as well, to help you absorb the calcium.  Calcium is apparently an antagonist, which means that if you have too much of it in your body, your magnesium levels get lowered, so I also stopped taking the calcium supplements recently, as a little experiment to see if the magnesium I'm taking could be put to better use in my body and help alleviate some of my symptoms. 

I am no doctor, but I know that I'm most responsible for my health, so I do research on my own and do my best to interpret and apply it, with the help of my professional medical team.  Nobody is going to care more about me than my own self and I don't expect anyone to.  Everyone has to look out for Number One before they can help others.  Do your homework and see what works for you.  

I share whatever I learn with my readers, so they can start thinking about the things that might be helpful for them.  Use those search engines and definitely discriminate based on the motives of the writers.  If they are trying to sell me a product, I move on to the next resource. 

If you have any information you'd like to share, please feel free to comment and provide your links.  I'm eager to learn how best to take care of myself.

Cardiologist Appointment Wrap-Up

I saw the new cardiologist last Wednesday morning.  He specializes in heart rhythm issues.  He was very nice and explained a lot of possibilities.

Basically here's the summary: He gave me a heart monitor to wear for 30 days.  I'm wearing it right now.  If I have any palpitation events (I will try to make it happen, if possible), it will record the electrical signals for a minute.  Then I call a phone number and put the receiver on the playback speaker so they can study it.  When I see the doctor again in January, he'll have the study results and can tell me more about what particular kind of problems I'm having.

Based on my past heart history and test results, he is speculating that I have a certain kind of supraventricular tachycardia (SVT), but there are several subtypes.  He is further speculating that the kind I have is due to an electrical circuit that has grown on my particular heart (he says as much as two-thirds of the population have this circuit) and that in my case, it is causing these sporadic tachycardia events to occur.

There is an invasive study that can be done to confirm AND FIX this particular circuitry problem, and there are very few complications.  He gave me a handout about this electrophysiologic (EP) study, but basically, they go in through a vein and try to force the arrhythmia electrically to confirm the problem.  If they can confirm the problem, they can also fix it by breaking the circuit using radiofrequency catheter ablation.  This procedure uses a freezing (or heating) technique to make the tiny, but necessary change to stop the problem.  Some folks use heat, but he recommends using the freezing technique, because it's reversible if any mistake is made that might affect the rest of the heart area.  Heat is not.

There are also drugs that can be used to control arrhythmia, but they have side effects and all that jazz.  I'm not really in the market for adding more drugs and side effects to my repertoire.

Now, it is entirely my choice about what I do or whether I do anything at all about these palpitations.  IF he can confirm what kind of palpitations I'm having, and if they are the kind he thinks I'm having, there is no danger of damage to the heart or anything and it is more a matter of personal choice and a decision about whether these are interfering with my life or not.

Years ago, one of the episodes I remember having seemed to be triggered by my jumping rope on the driveway.  So yesterday, I grabbed my old jump rope and, believe it or not, I whipped out a few minutes of fast jumping in the garage, trying to get the heartbeat to flip.  As I predicted, my knee buckled, but I continued a little longer, trying to get some test evidence.  It was all for naught.

I've also been trying to trigger palpitations with some quick sniffs after being out in the cold.  I noticed that sometimes I'll have a short episode from doing that, but the heartbeat returns to normal after some coughing - usually only about a minute later.  I sniffed and sniffed and sniffed, but so far it hasn't worked.

It's odd to be wishing for an episode of tachycardia, but it would make wearing this stupid heart monitor worthwhile.  I hope something happens soon.

If  you're interested in learning more about these heart rhythm problems, here is a great page with animations that can help.

Heart Problems

I declared yesterday a "good" day and invited my husband for a dinner date while I'm feeling good.  So what happens?  Not long after the soup arrives, my heart flipped into a pounding palpitation that ended up lasting through most of the night.  It made me feel like there was this pressure on my throat and chest, and the beat was visibly moving my body.  I continued to eat dinner and hope it would flip back to normal soon.

We got home and went to bed a bit early so I could rest.  As the hours wore on, I started to develop pains in my left shoulder blade and left arm, and endured that odd, pounding discomfort in my chest and throat.  Sleep would not come for many hours.  I had been able to focus on the proper rhythm before and have the heartbeat return to normal, but it just wasn't happening this time.  All through the night, I wondered when I would have to make the call to get up and head to the ER to try to fix it.  Ultimately, I decided that if I still had the palpitations in the morning, I would go to the hospital instead of work.

After a fitful night of mostly unrest, I finally found relief in the early morning hours - probably somewhere around 4am or 5am.  Thank goodness.  I was finally able to get a couple hours of sleep so I could get to work.  I have already used up all of my sick days for the year, and have alloted my few remaining vacation days, so taking a day off right now is not an easy option.

I assume the type of heart arrythmia I experienced was atrial tachycardia, since that's the diagnosis I got after my first episode at age 17, when I went to the ER to have the proper hearbeat rhythm restored with IV drugs.  I went to a cardiologist not long after that first episode and was checked out with EKG and an ultrasound machine.  Everything seemed normal.  There was no diagnosis.  I was sent home with "some people seem to be born with a tendency to have these" sentiment, and instructions to avoid caffeine.

After 30 years, I've had maybe about 50 episodes total, but most of them only lasted a few seconds or minutes.  I remember one major one that lasted through a movie about 10 years ago.  Another one that started after jumping rope.  Now this one.  I don't know how long to wait until going to ER for these things, because I always expect them to be short.  On top of that, last spring I went to the ER for breathing issues (not heart) and they made me take a stress test with ultrasound - and of course, everything looked just fine with my heart, even though I was having trouble breathing.

I have decided to see a cardiologist anyway.  I figure at least they can see if things have changed, take tests I hadn't had before or that may be more accurate today than they were back then.

Today I am feeling the after-effects of the episode: my throat and chest hurt as I breathe in.  They feel like their elasticity is lacking.  Maybe the fibro is making my muscles "remember" what they endured for so many hours.  I noticed that my body remembers pain for a long time.  Pokes and little dings hurt for minutes after the contact is done.  It's the same with sounds.  Sometimes sounds hurt, and it continues to hurt or echo in my mind after it's over. 

Anyway, I'll post an update once I get an appointment for a heart specialist and receive any test results.  I hate to hope for a diagnosis of some sort, but it's frustrating always having everyone tell me I'm fine and shouldn't be having problems.  (Fibromites should know exactly what I'm talking about.)