Amy's Journey with...

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Thursday, December 30, 2010

Cynical or no cure?

Good news, though, we got our disability today so no more soup kitchen!  Yay!  I'm not sure I have any pride left anyway.  We can get black ink today and I can print off letters to my lovely pen pals...and mail them!  I think that calls for another yay!  DH got me Chicken McNuggets from McDonald's for breakfast.  We got a circular in the mail today with a picture of a 50 piece McNugget.  I thought they were mini-McNuggets, along the lines of mini-M&Ms.  You may get 20 M&Ms in your handful but you'd have like 40 minis in your handful.  I couldn't fathom why one person would want 50 regular size McNuggets.  When DH told me that they are regular size McNuggets I realized that the 50 piece size is for parties.  So my sweet DH brought me a 10 piece for a very late breakfast and they were very yummy.  

Am I cynical, or coming to grips with reality?  I don't think there will be a cure for V-EDS anytime soon, not within the next five years, anyway.  I don't think there will be a cure for H-EDS anytime within the next fifteen years.  They don't even have a genetic test for it yet (which DH reminds me of constantly) so I doubt they will be curing it soon.  I don't believe that there will ever be a cure for ME/CFS, IBS, or fibromyaglia.  I'm having a lot of hand pain today.  I had planned to make a little something to go with my pen pal's Christmas presents, but my hand pain has prevented that in the last few weeks.  I can't handwrite either, so I'll be typing letters for awhile.

For some reason I find myself empty and a bit depressed today.  I think when I get stamps and printer ink I'll be happier.  I mean I think I'll be ecstatic when I get stamps and printer ink.  I hate not being able to mail letters to my pen pals.  It isn't fair to them to not get letters because of my financial problems.  I love my friends very much and am surprised they are still my friends as often as I have to wait for money for stamps.  I hope I am as good of a friend to them as they are to me.


Sterling and Niki have been taking turns the last four days during my flare with spending time with me in our bedroom. They are such good little kitties. They cuddle and snuggle me. When I get lonely stuck in the bedroom or I cry because the pain is so bad, the kitties are there. I love being a Kittymommy.

I have decided to try to do as much as I can naturally.  I was exercising before I went into this flare.  A combination of the stress of a houseful of people, stopping Lyrica cold turkey two weeks ago, and running out of Flexeril (muscle relaxer) put me into this flare.  I'm sure the exercise help put me here as well.  Eventually I hope that the exercise will keep me out of flares rather than put me into them.  I made the bed this morning and had to rest for twenty minutes afterwards because I was so incredibly worn out, shaking so hard, and in so much pain.  I want to start using as many natural remedies as I can.  I already use some herbs to help me, just basic ones: chamomile, peppermint, etc.  I think that there are so many natural and safe healing substances out there that I have yet to explore.  I must add that I want to be not only natural but also safe.  Opium is natural, but not safe.  See my point?  I want get healthier and on less medications so I can be a Mommy to human babies as well as the furry four legged kinds.  I want to be a Mommy so bad.  I have babies on the brain.  I feel called in life to be a wife and mother, two wonderfully important jobs.  We want to homeschool our kids. I believe we will only have one kid, since we are both disabled.  We both need to get in better health to be parents, though.  How do you stop my joints from subluxating and dislocating, though?  How do you stop Jim's roughly ten seizures a day?  If things don't change we can't have babies because we wouldn't be able to be the parents we need to be.  My EDS is degenerative, but I will try my best to slow down that process.  I don't know how much power I have over that, but I do believe I have some power.

Monday, December 27, 2010

Bring On the Rain

"Bring On the Rain" by Jo Dee Messina



Another day has almost come and gone
Can't imagine what else could go wrong
Sometimes I'd like to hide away,
somewhere and lock the door
A single battle lost but not the war

Cause tomorrow's another day
And I'm thirsty anyway
So bring on the rain

Its almost like the hard times circle 'round
A couple drops and they all start coming down
Yeah, I might feel defeated,
And I might hang my head
I might be barely breathin -
but I'm not dead (no)

Cause tomorrow's another day
And I'm thirsty anyway
So bring on the rain

No, I'm not gonna let it get me down,
I'm not gonna cry
And I'm not gonna lose any sleep tonight

Cause tomorrow's another day
And I am not afraid
So bring on the rain

Tomorrows another day
And I'm thirsty anyway
So bring on the rain

(Bring on, Bring on the rain)

No I'm not gonna let it get me down

I'm not gonna cry

So bring on the rain....(rain...)

(bring on, bring on the rain)

bring on the rain

bring on the rain

bring on the rain 

Tuesday, December 21, 2010

Are you a 'hip crip?'

I recently looked at the lists I am listed in by other people on Twitter.  Quite a few of the people called the grop I was in "hip crips."  Maybe it's just me, but when I think of myself I am not a "crip."  I am not crippled I am mobility impaired.  I have no problem saying I'm disabled, but a "crip?" No, I do not think of myself that way.

Is this blogged stemmed from some sort of denial?  I guess it could be, but I sincerely doubt it.  I just don't belong in those groups.  The other bothersome groups I found myself listed in were three "team gimps."  Do I even have to say how crazy that drives me?

Monday, November 15, 2010

Grrr!

It's amazing how you never realize the lack of handicap accessible places until you are in the position to need them.  My ankles have been wonky lately and I rode the scooter at Wood's grocery store last night.  When we went to go through the checkout lane I couldn't get through in the scooter.  DH took everything out of the basket on the scooter, put it on the counter, and I had to back up and go around the register.  If I was by myself at Woods how would I check out?  There was only the one lane open.  I am surprised at the number of places that have no handicap accessibility.  I find this immensely frustrating!

Sunday, September 19, 2010

Shoulder Problems and Questions for Myself

I've been offline for awhile and probably will be again.  I just wanted to mention that.

Okay, so I've noticed that I have now trained my mind to subconsciously limit the range of motion in my shoulders.  Is that a good thing or a bad thing?  The way I look at it, I am not injuring or subluxating my shoulders all the time anymore (now it's just daily, not 7 times a day!) but I might eventually lose muscle in my shoulders.  DH and I discussed it and he thinks I should use full range of motion every couple of days.  The problem I have with his solution is that once every couple days will be enough to keep my shoulders inflamed and in really bad pain all of the time.  It takes three days for my shoulders to feel better again after using full range of motion once.  It isn't that simple, though, because once I subluxate it the pain increases and the subluxations increase.  More subluxations will eventually lead to shoulder dislocations.

I need a guidebook to this EDS thing!

Sunday, September 5, 2010

Another day, another day...always another day spent in pain

I woke up early this morning at 4:00 am.  I immediately realized from my pain levels that I forgot to take my nighttime meds.  I fell back asleep and then Jim and I both woke up around 8:00 am.  We were discussing the day ahead of us and theorizing about how Niki could have gotten out last night, when I stood up to straighten out the sheets.  (Yup, I sometimes even make the bed while Jim is laying in it.)  When I stood up my right hip subluxated.  It felt closer to dislocating than it ever has before.  I haven't the slightest idea what to do when it finally does dislocate.  I still can't get my subluxated ankles back in by myself.

So my start to the day wasn't that great.  I'm in a whole lot of pain today and can't even hobble a few feet without my cane.  Because we still have company (it's been a month!) I am suffering an increase in my anxiety levels.  Higher anxiety levels and increased pain levels lead  to depression.  Most of yesterday I stayed in the bedroom.  The bedroom is my safe place; no one is allowed in but myself and my DH.  It hurts sitting on the bed rather than in a chair or on the couch.  My back has been really acting up lately, too.

Poor Sterling!  I just had to jump up and go to him because in his sleep he rolled off the dresser and onto the floor.  He didn't land on his feet, either.  Contrary to what most people believe cats don't always land on their feet.  A cat has to be a certain height up before he can relax his muscles and do his cat-landing-on-feet thing he does.

Well I guess I'll end this up here.  Hope everyone is enjoying their weekend.

Saturday, September 4, 2010

My head is spinning with questions

I'm frustrated.  My neurologist told me he thought I had a mini-stroke (TIA) but ran no tests.  He just told me to take an aspirin a day and asked me to show him my EDS.  Actually he didn't ask he grabbed my hand and tried putting it backwards.  I don't like people touching me so I took my hand away and bent it backwards.  It was a painful day anyway and that caused even more pain.  I was kinda pissed that he didn't seem to believe me.  He'd never heard of EDS, either.  How could he not believe me when he didn't even know what EDS is?

Because he never ran any tests I have no idea whether or not I really had a mini-stroke or not.  So I have to live on the assumption that I did.  That's scary!  I don't have high cholesterol and I don't have high blood pressure.  I don't know whether a mini-stroke can happen as a vascular part of EDS or not.  I know that all types of EDS can have vascular complications, though.  Doctor what's-his-face said I have H-EDS, while Dr. K. said he thought I have V-EDS.  Of course Dr. K is a rheumy not a geneticist.  I do know that he's seen people with V-EDS, because I was referred by a girl on Facebook with V-EDS that he diagnosed.  He still sent both that girl and myself to see a geneticist who specializes in connective tissue disorders.  He said that just because I haven't had vascular complications yet I could still have V-EDS.  Or I guess it is always possible to have a mixture of different types, many of my EDS friends do.  Of course our car is broke down so I missed the EDS specialist's appointment four or five hours away.  I just took a really long sigh!

I thought stroke was a symptom of vascular components of EDS but when I asked my EDS friends they didn't think so.  I know that my friends aren't doctors but most of us know more about EDS than our doctors do.  Then when I read Dani's story she said that she's had strokes as a complication of EDS.  So I'm confused!  Plus, like I said for all I know I may not have had a mini-stroke because he did no testing.  Then again I've also read that you sometimes can't test for a mini-stroke, especially if it did not permanent damage.

I don't know what to believe.  I think another long sigh is in order.

Wednesday, August 18, 2010

Another long day at University hospital with good news


I went for the Tilt Table Test (TTT) last Friday but have been suffering from really bad writer's block for most of the past few weeks.

We caught the Medicaid Transport van at 5:00 am.  (Yes, I just said wrote 5:00 am!)  I am not a morning person so this was really hard to accomplish!  I had three hours of sleep the night before.  My TTT was scheduled for 7:00, the echocardiogram for 10:30 am, and the cardiologist for 1:20 pm.  After hobbling down the hallway on my cane we discovered that we had arrived shortly before the Cardiology Diagnostics department opened.  Fortunately we did not have a long wait.

I was the only one with a cardio diagnostic test scheduled for the morning.  I think that one of the ladies who did my TTT was really glad to have a slow morning after her really busy day the day before.  They said that since the morning was open for them that they would go ahead and do my echocardiogram right afterwards.  

Once I got back in the room they did a quick history and went over the potential side effects of the TTT.  After that I had to change into a hospital gown above the waist so they could get the stickers on.  Once the EKG was hooked up, an automatic BP cuff was on my left arm, a manual BP cuff on my right arm, and I was strapped tightly to the table we were ready.  I was really afraid that I'd freak out strapped down because of all the things I've seen in our shitty mental health system.  I was scared, but it wasn't long and my mind was overwhelmed with the incredible pain of standing.  The test was 45 minutes long or until you faint.  I had to have them stop it early because I had searing pain shooting down my legs and, of course, a high level of pain everywhere else, too.  I was incredibly embarrassed that I can't stand up that long without crying from pain.  The techs never made me feel bad, but I still am ashamed I cannot stand for 45 minutes and I'm only 29.  I'm not even 30 yet.  By the time they did the echocardiogram, or ultrasound of the heart, I was crying in pain.  I don't know if they saw it but I know they heard me crying out everytime I was touched.  As anyone who has had an ultrasound done will tell you; the tech pushes hard on your body to get good pictures.  

In between the two tests they went and got Jim in the waiting room to tell them my un-official result of the TTT.  I was very pleased to know that the un-official results were negative for any dysautonomia.  Yay!  

When they had completed both tests they got me a wheelchair (by then I couldn't walk) and Jim wheeled me to the Cardiology department from the diagnostics department.  By this time my pain was a 9 out of 10 and there was no way I wanted to stay for the afternoon appointment.  I was too exhausted and in way too much pain.  So we rescheduled with my cardiologist, Dr. Z.  

We went to the lobby of hospital and called the Medicaid Transport van.  He agreed to pick us up after picking up the woman he was waiting on.  He said he'd be there within an hour.  We went outside to wait.  Jim pushed the wheelchair down the hill, across the street, and under some trees so he could smoke a cigarette.  I got out my water and a Diet Pepsi and drank that.  We both ate a snack that I'd packed and Jim went back across the street to take pictures of the hospital for my blog.  I'd tried getting the pictures myself, but I couldn't.  So the lovely pictures here are thanks to my honey.  An hour and a half after we called Medicaid Transport they showed up to take us home.  After we got home I slept four or five hours without waking up once.

Monday, August 2, 2010

Saw the cardiologist


This blog is a bit overdue.  I saw the cardiologist in Columbia, Missouri at University Hospital.  I took a picture of the rug at the entrance because it was the only place that I could find the whole title of the place.

So we did make it past the rug to the cardiologist's office. lol  I didn't have to wait long in the waiting room but had to wake a bit in the examining room.  Jim stayed with me almost the whole time.  Dr. Z was a young woman, only 30 or so.  Since I'm 29 I did wonder; if I had lived my life better would that be me as the doctor?

Dr. Z was very nice.  She was familiar with EDS (amazing!) and agreed to do a Tilt Table Test (TTT) and an echocardiogram.  She explained that an echocardiogram is an ultrasound of the heart.  The TTT will be testing for Dysautonomia and the echo will be testing for Mitral Valve Prolapse, and I guess any other funky stuff.


After Dr. Z finished with me she called in the doctor above her to see me.  He walked in and I could tell he was happy to meet someone with EDS.  He asked me how I know so much about it.   He said that I knew more about EDS than he did, then he asked if I was a professional in the medical field!  I was so surprised and excited.  Of course I told him how I wasn't a medical expert but am doing my best to know all I can about EDS.  Well I tried using those words; I'm afraid that I was so excited everything came out wrong.

We'd taken the Medicaid bus to get there and back.  It was a loooong day!  I went home and slept for four hours and Jim and I went to bed early.  With the fibromyalgia, low thyroid, and EDS, I get tired out very easily.  For those who are reading this and don't have these or other medical problems I want to point out there is a difference in being lazy and having multiple chronic illnesses.

Which reminds me, I need to get paperwork mailed to me to get my blood work done from the same place for my endocrinologist.  He's a great guy and I am going to ask him about the lump on the side of my skull.  It is probably no big deal, but my mom had Castleman's Disease and I am pretty sure that hard lump used to be a lymph node.  I have no idea if Castleman's Disease is hereditary though.  Either way an endocrinologist should know if something is wrong.  I've had it for 4 or 5 years so it isn't killing me or anything, but it is still good to know what it is, right?

My TTT, echo, and follow-up are all on the sameday, which is good.  This month I have the EDS doctor in St. Louis, MO.  I'm excited/nervous!  I have no idea HOW we are getting to St. Louis, and that is where most of the stress lies.

Sunday, June 6, 2010

The Pain is Back...

I had a few days with relatively low pain.  It was the lowest pain I've had in years.  Now things are starting to act up again.  I feel that deep bone ache, joint pain, joint instability, and muscle and nerve pain.  I can literally feel my  muscles tightening up while I write.  Yesterday I was able to sit with my shoulders back and I could sit almost straight.  Now my back muscles, shoulder muscles, and neck muscles are drawing in.  I am already hurting bad and it's only almost 9:35 am.  I have pillows on the back and seat of my chair.

What is funny, stupid, and I don't know what is that a big part of me wished so hard the pain would be gone forever that I wanted to convince myself that I didn't have EDS anymore.  I know it sounds stupid, because I can't change my genes.  I just wanted to believe so bad I wouldn't hurt like that again.

My fingers hurt too bad to ever handwrite and for two days I was able to handwrite a letter without excruciating pain.  It was awesome.  I tried this morning to write and it hurt so bad.  Right now it is very painful to type.

I'm still waiting on the Columbia, MO University hospital's rheumy department to call back.  If anyone is thinking of going to the University Hospital in Columbia, MO for EDS, I highly warn against it.  Their office says "EDS is no big deal, it's just hypermobility." "We call EDS just hypermobility around here." "People with EDS don't wear braces. Why would they? They don't help."  I will be glad to provide the doctors' names if you would like, but you'll have to message me.

I'm still supposed to see Dr. W in St. Louis, MO in August 20th.  I am supposed to see a cardiologist at University Hospital in Columbia on...flipping through date book...oh shit!  I missed the appointment!  Apparently my appointment was June 4th at 2:00 pm.  Well it looks like I'll have to reschedule that.  I've been passing out lately and would like to be evaluated for POTS and Mitral Valve Prolapse just because of the EDS diagnosis.

This week I've also been dealing with a cold.  Ick.  Speaking of ick, I had a really bad and really scary reaction to a bag of clothes that molded.  I could feel my throat swelling, I was coughing hard, and I was having a hard time breathing but fortunately that was the worst of it.  So now I know that I am allergic to tree pollen, grass pollen, mold & mildew, and dust.

Well I guess I'll go now.  Thanks for reading ya'll.

Tuesday, May 11, 2010

You might have EDS if...

You might have EDS if...
1) You have ever been kicked out of a doctor's practice for being too high maintenance.

2) You don't drink, but you still have more "mystery bruises" than a perpetually drunk frat boy.


3) Your medical records contain any of the following terms: "hypocondriac" "drug-seeking behavior" "munchausen by proxy" or "psychosomatic"


4) Any of your funniest stories start with "when my doctor first gave me (insert medication here)..."


5) You go to the circus and are offered a job.


6) Your doctor has ever uttered the phrase "THAT'S a new one!"


7) Your friend, the gambling addict, stops going to the casino and starts betting on the number of times you will dislocate a particular joint that week.


8) You tend to date around before you commit...to a new doctor.


9) You are convinced your doctor should be paying YOU for teaching him about EDS.


10) You envy college students for the amount of sleep they get.

11) You never understood why everyone kept complaining about that 'one spot' on their back they could never scratch.

12) Your number of (wrong) diagnoses outnumbers your age


13) Medical students flock in the room to OHH and AHH

14) You have to explain EDS is NOT erectile dysfunction

15) Your doctor asks you to perform "tricks"

16) Your co-worker suggests you could go to Hollywood and play dead people because they could put you in any position.

17) One of your PTs says maybe you should make an appointment with Dr. House.

18) Your prized possesions are your wrist braces.

19) You have to remind yourself not to hyperextend your knees when you stand for any length of time.

20) The only gym test you ever excelled at was sit and reach.

21) Freezing cold hands and feet in the summer, not to mention seasons when it is actually cold.

22) "I can only deal with one issue per appointment".

23) You hate the days you've got to get up before 11 am.

24) "We can't link your pain with the fatigue" - two years later - "Yes, fatigue is very common with EDS"

25) You take joy in doing your "tricks" to scare people. 

26) You sit in gym and wonder how in the world people can be running and not limping or crying.

27) The more time you spend around normal people, the more things you find "wrong" with you.

28) You've never had anyone complain that you're not flexible enough in bed!

29) You've seen more doctors than you can count on your hands or feet.

30) You realize you have more doctor’s numbers in your cell phone than anything else.

31) You keep buying more and more pillows.

32) You realize you have more doctor’s visits on your work calendar than meetings.

33) ou know stairs to be the work of an evil being ou know stairs to be the work of an evil being.

34) Your partner/spouse lays down in bed first, arms open. You rearrange around them. Then they ask, "Where 
can I touch you?"

35) Your rice crispies aren't the only thing that "snap, crackle, and pop" in the morning.

36) When you can reach down and palm the ground despite the belly of 4 kids, no exercise and an extra 70 
pounds...

37) Your list of symptoms is longer than the monthly grocery shopping list..

38) You've heard your mom say too many times to you, "Don't sit that way, Just looking at you makes MY joints 
hurt." and she gets a blank stare in return.

39) if you keep you symptom list and medical history on your laptop, so you can print it out for the doctor of the 
week, since you can't remember what happened when.

40) If you have tried to wash off a bruise, 'cause you didn't process what it was, and then stood in the shower 
staring at it stupidly.

41) You've ever had a orthopod tell you that there's nothing wrong with your shoulder/knee/ankle/etc.

42) Losing your Aspercreme and Biofreeze qualifies as a household emergency.

43) When your husband buys you a massaging chair with heat pads and a vibrating neck pillow for Christmas!

44) When you have a hard time losing weight because all 20 medications you are on, say to take with food.

45) I i realized it wasn't normal not to be able to put sun block on your back yourself?!??!?

46) When the doc says 'EDS, you can’t have that, that’s only seen in text books.'

47) When zebras bring on a whole new meaning...

48) When you write down all your meds on the forms in the doctors office and realize there is not enough room to 
fit them all...then that same doctor says "You are so young to be on so many different medicines."

49) You sleep with 4 or more pillows.

50) When the first thing every doctor asks you is "do you have a good pain management doctor?"  
And then the last thing they say to you is "you need a good pain management doctor."

51) You carry a printout from Wikipedia so you don't have to explain EDS yourself. 

52) When you don't notice how hypermobile your hands are until you're looking through candid facebook pictures 
and they look really freaky

53) You've had more sprains than anyone you know.

54) You fine a new bruise everyday. 

55) When your othopedic dr tells you that its the EDS instead of a break.

56) When you do a "cool trick" your classmates are either disgusted or think its cool.

57) You're older than you look, but younger than you feel.

58) You've ever had to research medical journals or websites to find out what the "normal" range of motion is 
supposed to be in a particular joint. 

59) You've ever looked at a picture of someone with a broken or dislocated joint and had to ask what the problem 
is because it just looks "normal" to you.

60) You come out of the Dr.'s office feeling as if YOU'VE done something wrong.

61) Your doctor gives you a stare and then raises their eyebrows in surprise when you tell them about your 
disease!

62) Someone that reads on the subject for 10 minutes and thinks they know it all about your problem.

63) When you barely hit a part of your body on an object and you have a bruise for 2 weeks.

64) "You can't have all this pain at your age. Do you want to be labeled with chronic pain at your age?

65) You look at the posted pictures on this website and think "that isn't normal?"

66) Your body parts go out more than you do.

67) What about you see a picture of what someone with EDS can do and then go try it, only to discover you can!

68) When you KNOW you can't do something considered normal, but can do all kinds of things considered 
abnormal!

69) When you wake up at 6, still tired, aching all over and go ahead and get out of bed just because it hurts to lay 
there. 

70) When you get up at 6 (see #69) and don't get dressed until noon.

71) When all you appointment books have late afternoon appointments (see #70) because mornings "just ain't 
happening."

72) When you read these statements, totally relate to them, and laugh when you feel like crying because they are 
all true....

73) You dislocate one ankle sitting on it and promptly dislocate the other couple hours later same way.

74) When you go to see a specialist, and the specialist says you need to see a specialist. That's a little disturbing 
LOL!!!

75) If you've ever heard, "Uh huh, well, *I've* never heard of that," in a disbelieving and condescending tone from 
a nurse; you might have just told them that you have Ehlers-Danlos. "Yeah, riiight, how do you spell it?"

76) Your pill box resembles a pharmacy.

77) You are convinced you have a factory defect and are waiting for the recall, with a possible refund!

78) People say they know what it feels like to be irregular occasionally but they don't know what its like to be 
regularly irregular

79) You have pills in your bag, next to your desk, on your bed side table, at your mothers house, and others 
sprinkled around for emergencies. (You never want to walk that far.)

80) Arguing with doctors about a handicap pass is a routine you have memorized, but still dread.

81) You watch Olympic figure skating, and are confused when Scott Hamilton is amazed at a skater's flexibility, 
because that is just normal for you.

82) Simultaneously amazing and sickening a yoga instructor at your first yoga class. She doesn't believe you when 
you say that you haven't taken yoga before.

83) You are confused when someone asks, "Don't you hate when you get that itch you just can't scratch?"

84) They mention Ehlers-Danlos Syndrome on "House" or "Bones" and you scream "YESSS! WAY TO REPRESENT!" and high-five your roommate.

85) The retirement home folks on the city bus find out about your physical maladies and inevitably tell you "Sweetie, I know just how you feel" and you're at least 60 years younger than them.

Sunday, May 9, 2010

Little Risk for Addiction From Long-Term Opioid Use in Select Chronic Pain Patients

"Little Risk for Addiction From Long-Term Opioid Use in Select Chronic Pain Patients"

by Pam G. Harrison

Long-term opioid therapy is associated with little risk for addiction when given to selected patients with chronic noncancer pain (CNCP) and no history of substance addiction or abuse, according to a review published online in the January issue of The Cochrane Library.

Meredith Noble, MS, ECRI Institute, Plymouth Meeting, Pennsylvania, and colleagues found that only 7 (0.27%) of 2613 patients in the studies reviewed who received opioids for CNCP for at least 6 months reportedly developed an addiction to the medication or took the medication inappropriately. Most of the participants in the reviewed clinical trials had chronic back pain after failed surgery, severe osteoarthritis, or neuropathic pain.

Importantly, however, a significant percentage of patients taking opioids in any form, but especially oral formulations, withdrew from the study because of adverse effects or insufficient pain relief.

"I think one of the most important things to note is that patients in this review were screened for any history of addiction, so findings may not be applicable to the population as a whole or to people with substance misuse problems," Ms. Noble told Medscape Psychiatry. "But the most important message about this review is that we still don’t have an answer for many people living with chronic pain."


Clinical Studies

For the review, investigators analyzed findings from 26 studies with 27 treatment groups involving a total of 4893 subjects. Twenty-five of the studies were cases series or uncontrolled long-term trial continuations, whereas the remaining study was a randomized controlled trial comparing 2 opioids.

Oxycodone, morphine, and methadone were among the opioids prescribed, and they were taken orally (n = 3040), transdermally (n = 1628), or intrathecally (n = 225). Nonopioid therapy had to have failed in the patients before study entry. "Just as opioid and route of administration varied among studies, so too did dosage," the investigators write, "and doses also varied considerably within studies due to individual differences in pain level, opioid tolerance, and titration."

Of all the study participants, 22.9% of those taking oral opioids discontinued their participation in the trials because of adverse effects, as did 12.1% of patients using a transdermal patch and 8.9% of patients using an intrathecal pump. The most commonly reported adverse events were nausea and other gastrointestinal disturbances, headache, fatigue, and urinary disturbances.


A significant proportion of patients also discontinued opioid therapy because of insufficient pain relief: 10.3% discontinued oral treatment, 7.6% discontinued intrathecal therapy, and 5.8% discontinued transdermal therapy.


Findings on quality-of-life outcomes were inconclusive for all modes of administration.

Table. Reasons for Study Discontinuation

Discontinuation Because of AEs 
Discontinuation Because of Insufficient Pain Relief (95% CI), %
Oral opioids
22.9 (15.3 – 32.8)
10.3 (7.6 – 13.9)
Transdermal opioids
12.1 (4.9 – 27)
5.8 (4.2 – 7.9)
Intrathecal opioids
8.9 (4 – 26.1)
7.6 (3.7 – 14.8)
AEs = adverse events; CI = confidence interval


Controversial Use

According to Ms. Noble, long-term use of opioids to relieve noncancer pain remains controversial. Some patients with CNCP who have been unresponsive to other forms of treatment will not consider opioids because of concerns about addiction. Concerns on practitioners’ part that patients treated with opioids may develop dependence on them also represent a barrier to treatment. On the other hand, severe chronic pain clearly impinges on quality of life and may be a risk factor for suicide.

Although the study authors suggest that the evidence supporting long-term opioid use in selected CNCP patients is "weak," those who are able to continue with opioid therapy can achieve clinically significant pain relief, and the risk of inducing opioid addiction in these individuals is "rare."

"We need a lot more work to find more therapies for CNCP that are safe and effective. In the meantime, physicians should have frank discussions with patients to ascertain their potential for opioid abuse and discuss their potential benefits as well as potential harms, because both patients and physicians should know that not every patient will either tolerate an opioid or get adequate pain relief from them," she said.

Nice Piece of Work

Richard Chapman, MD, University of Utah, thought the review was "a nice piece of work," especially given that the evidence investigators had to work with was not derived from well-done controlled clinical trials, as they would have preferred.

Most of the studies included in the review also involved patients with chronic back pain who almost by definition are going to be refractory to opioid therapy after living with the pain for many years. Perhaps more important is the potential for long-term opioid therapy to interfere with multiple systems.

Although the studies analyzed by Noble and colleagues would not have detailed such effects, "opioid drugs look to the body like β-endorphins, and [over time] they can confuse and dysregulate the immune system, induce opioid hyperanalgesia, and lead to endocrine deficiency," Dr. Chapman told Medscape Psychiatry.

Patients undergoing long-term opioid therapy thus may be at increased risk for infections and tumors, hurt more and longer after a surgical procedure and other painful stimuli, and develop prematurely low levels of testosterone in men and estrogen in women, with their attendant consequences.

"Chronic pain is an enormous problem in the population, and physicians often don’t know what else to do for patients so they write a prescription for the opioids and hope for the best," said Dr. Chapman. "But as we saw in this study, many patients don’t do that well on these medications or they end up staying on the medication because there is nothing else we can rely on, and we need to do a better job of fitting our patients to the therapies we have available."

The study authors and Dr. Chapman have disclosed no relevant financial relationships.


Cochrane Database Syst Rev. 2010:(1).
Pam G. Harrison is a freelance writer for Medscape.
Medscape Medical News © 2010 Medscape, LLC


Tuesday, May 4, 2010

Possible Vascular EDS?? No, thank you!

Well I saw Dr. K in Kansas City, MO.  He is a rheumy who works out of St. Luke's.  He said that he felt I have Vascular EDS, rather than Hypermobility EDS, and wanted to send me back to a geneticist to make a definite diagnosis.  As you can imagine I've been nervous.  I think since last Thursday I get upset and cry a lot easier and I'm slightly more stressed.  Jim wanted me to not look up anything about V-EDS but I have for two reasons: 1) I wanted to read the symptoms to know if there is a possibility I am Vascular type and thus how much I should be concerned 2) I am doing research to make a few slide shows for May EDS Awareness month.  I do have quite a few symptoms indicative of vascular type but I also have quite a few symptoms indicative of hypermobility type.  So yes, I am nervous, but overall I have more hypermobility symptoms and I hope for the best.

He gave me the name of a geneticist in St. Louis, MO who specializes in EDS.  It would be a LONG trip to STL but we are willing to make it for my health.   It took me until today, Tuesday, to gather the courage to call for an appointment to see this doctor.  Much to my dismay and annoyance this doctor no longer works with connective tissue disorders.  Nice, huh?  The receptionist gave me the name of a geneticist over at Children's Hospital in St. Louis that sees patients with connective tissue disorders.  She told me it would probably be best if I called Dr. K, who referred me, and asked him if he wanted me to see this doctor at Children's.  The receptionist also told me that most geneticists work in children's hospitals or children's departments of hospitals.  So, I called Dr. K's office in KC and got a voicemail that the receptionist was on the other line. Dang it! I hate phone tag.  So around two o'clock in the afternoon I started crying and Jim held me and I fell asleep.  When I woke up it was four thirty and there was a voicemail from Dr. K's receptionist returning my call.  Did I mention I hate playing phone tag?  I didn't call back because it was already so late in the day.  I plan on calling tomorrow.  

Saturday, April 10, 2010

Forecast for today...pain reaching far beyond the horizon

When I have a good day there is a small part of me that hopes there won't be any more bad days following it.  Then when the pain comes back full force I feel like I've been smacked in the face, though if you were to take that simile literally a slap in the face would be a tiny, tiny percentage of the pain.  I can't blog long tonight because it hurts to move my head, I've got a lot of pain in the vertebrae in my neck.

I don't want to be thought of as negative, but I don't think that I'll be lots better.  Yes, the geneticist told me to exercise.  He also told me to hire a personal trainer.  Mmm hmm.  I feel like screaming when I think of him.  I can't walk without a cane but I'm supposed to hire a personal trainer?  I don't have money for that even if I wasn't in debilitating pain.  I don't need a personal trainer, I need a physical therapist!

Sunday, April 4, 2010

EDS babies II

I've still been thinking a lot about having a baby.  I would have to go off all of my medications for the whole time we were trying to get pregnant and then through the pregnancy and if I decided to breastfeed.  I might not even be fertile, as my PCOS (Polycystic Ovarian Syndrome) and hypothyroidism can both cause infertility.

After all of that, assuming I could get pregnant I have to consider passing down my EDS and my Bipolar.  I also have to worry about problems during pregnancy because of the EDS and I'm at a higher risk of gestational diabetes being overweight and having PCOS.

The remaining option to have children would be adoption.  My therapist I see for my Bipolar and PTSD also works as an in-home inspector for families who want to adopt.  She told me that Jim and I would not pass the inspection because of our health problems.  If I cannot lift a baby how could I care for her?  If Jim and I are both having seizures then how could we care for a baby?

I've always wanted children.  I feel as if my health problems have cheated me out of an important part of my life.  I can't help but thinking it isn't fair.  I have a lot of love to give, as does Jim.

What happens now?

Friday, April 2, 2010

When I fall apart do I duct tape or super glue?

Ah, I'm still having problems with my feet.  A bone in my left foot is dislocating.  Something as simple as rolling over in bed without letting my foot touch anything can dislocate the bone.  I joke about duct tape, but when band aids pull off skin and lead me bleeding I think that means I should only consider duct taping as a last resort.  I did buy some sport tape but I don't really know how to wrap my foot with hit.  I am going to look it up on Youtube.  I just don't know if I should give it a practice run when my foot isn't hurting.  Taping wrong and having to undo it doesn't sound fun right now.

I took a hot shower this evening that felt so good.  I have a chair I use to sit in while taking a shower.  It is a lawn chair, one of those folding types.  It is really comfortable and much better than my head swimming and holding onto the shower wall trying to balance while standing on no feet.  I still haven't figured out that feat yet.  Pun intended.  lol

I went to the doctor to get a referral to a cardiologist because I want to be checked for POTS and for Mitral Valve Prolapse.  I at least want a real doctor to take a history and run some tests.  My personality clashed in a major way with the physician I saw at the doctor's office.  I usually just see whoever I can get in with.  They all suck over there.  I asked for a cardiologist out of town.

I've been taking a lot of falls lately due to pain, foot dislocations, seizures, dizziness, and once, passing out.  So that isn't too cool.

I am trying to take things as they come.  Sometimes it is really difficult and sometimes it is not quite as difficult. Sigh.

Friday, February 12, 2010

Why can't I be taken seriously?

Well I saw my new rheumy Wednesday, which I also blogged about in my fibromyalgia blog, "'Fibro and CFS don't occur together' Whaaat???"

I was concerned with the doctor told me she didn't believe that FMS and CFS can occur in the same person.  I was a bit more concerned when I told her I have EDS and upon asking my type, she smiled and said "Oh me just call that hypermobility around here."  The unspoken, yet obvious words were "it's no big deal."  Yes, it is a big deal to me.  I think my EDS deserves a doctor to consider it when treating me.  I think my EDS deserves a doctor telling me about it.  Instead I was told by the geneticist that I have hypermobility, the least serious type...and that's it.  I realize that V-EDS is the worst and it shouldn't even exist in a perfect world.  No one should ever have to die from it again.

I still think that my H-EDS is something other than "no big deal."  I want to scream that it sure feels like a big deal to me, dumbo!  (I'm not sure where "dumbo" came in, it just seems to go good at the end of that sentence.) I want to be paid attention to.  I am not a hypochondriac, I have real conditions.  I am not a hysterical woman.  I am not being taken seriously and I'm angry about it.

She is the third rheumy I've tried and my fiance thinks we should just stay with this one because at least she is giving me the proper medication for my fibro and a script for physical therapy.  But what about my EDS?  It isn't as severe as a lot of people's.  I am in constant pain (and on constant medication for pain) but I don't think I've dislocated a large joint, only small ones and subluxated large ones.  So I know it could be a lot worse.  I also know as I've gotten older it has gotten much worse.  I don't know what to do.  I am exhausting the doctor supply! LOL  I really am at a point where I just don't know what to do.

Saturday, February 6, 2010

EDS days...Pain & Chocolates

Last night I had a truly painful shoulder subluxation.  Jim and I were trying to get Niki, our kitty, from behind a box in the "smoking room."  While he pulled the HUGE (and might I add really heavy) box back I reached down to grab Niki and pick her up.  When I did that I felt my shoulder move out and OMG I screamed.  I screamed and said every curse word I know, probably waking up the neighbors.  The pain was absolutely horrible.  I am getting more and more subluxations lately and my health is declining rapidly.  I am afraid that it is only a matter of time before the frequent subluxations turn into dislocations.  Jim was trying to help me pull my shoulder back into place while my nose was running and mixed with the tears and I was screaming.  It wasn't a pretty site!

I don't think someone without chronic pain can really understand it unless you've been there.  There have been times I wanted to die because I couldn't face anymore pain.  Knowing that I am loved by Jim and our kitties is sometimes the only thing that keeps me sane.  Seriously.  I've been in so much pain before that I have literally seen swirling spots in the air.  At that point the pain is all consuming.  It hurts to exist.

I don't know what I'd do without the friends I've made on Twitter, Facebook, and writing snail mail letters.  To any of my pals reading this, I really love you guys.  I can't make it out of the house often, a trip to Wal-Mart is a big deal and it is so hard to make it to Mass, which I really miss.  I want to make an appointment to talk to the priest, but I have to be in good enough condition to leave the house that day.

I'm going to have to drop out of school, I was going for my Master's in Sociology with a graduate certificate in Women's and Gender Studies.  I can't make it to class because of the pain and the last class I made it to I had a seizure in.  They weren't listening to me protest going to the ER by ambulance and in the end I was too out of it to argue.  I've had enough seizures that I don't need to go to the ER for just a single seizure.  It isn't like it is something new.

I also don't know what I'd do without Jim.  He's the love of my life and my anchor when I feel like the pain is sweeping me away from the shore.  We celebrated Valentine's early today. ♥  He got me two heart pillows, one big and red and one medium sized and pink, Ferrero Assorted Chocolates (Rocher, Ferrero Garden, & Rondnoir), a warm fuzzy heart patterned fleece blanket, and matching heart mugs.  He also got me a lovely card.  I really am blessed to have someone who loves me so much and I love him.



Sunday, January 3, 2010

EDS babies?

Babies.  They are everywhere.  I turn on the TV and there are pregnant mommies, babies, newborns, toddlers.  I walk into the store and find myself in the aisle along with the baby powder and Pampers and all things baby.  I lay next to My Love at night with my hand resting on my empty womb, dreaming of the time I will be filled with the child My Love and I will make.

So...I am baby obsessed.  I only recently received the diagnosis of Ehlers-Danlos Syndrome, Hypermobility type.  I'll cover more what EDS is in another blog post soon.

I keep having these dreams of being pregnant and finding out my baby has severe EDS.  I know that there are risks to me if get pregnant because of having EDS and I know that my child will have a 50% chance of getting EDS from my genes.  I've been tweeting about it (of course!) and here are some I took screen shots from for this blog post.


I know I should weigh the risks, but really the only thing I know about EDS is that I have it.  The rheumatologist made a preliminary diagnosis, with the geneticist making the final EDS diagnosis.  Before I even received the EDS diagnosis my gynecologist told me that I'd have a high risk pregnancy and he wouldn't be able to handle it, rather I'd need to see a doctor dealing in high risk pregnancies.  Scary.  That is really scary.  Add that to the fact that my Hashiomoto's hypothyroid, my epilepsy, and my Polycystic Ovarian Syndrome (PCOS) can all cause infertility...well let's just say it scares me.  They also say that fibromyalgia (FMS) may be partially genetic.  Would I be a bad mother just by giving birth because I'd be putting my baby at risk for a life of ill health and pain?

Someone recently told me that everyone who has a baby takes a gamble on whether they will be having a healthy baby or not.  What if the gamble was more like Russian Roulette?  Would that be what it would be if I gave birth?  Right now I don't think too much of the complications that may affect me.  To borrow a phrase my mother used to say, but in all honesty, don't I need to take that into consideration as well?  We have a friend who stayed on her seizure medicine while she was pregnant and her son was born with severe birth defects.  He's four now and wasn't expected to live that long.  If I went off all of my medicine, how many seizures would I have?   Would only the tonic clonic seizures hurt the baby?  Or would the simple and partial seizures hurt him, too, because my body is stressed?

Of course, we also come back to the beginning of the topic on babies...EDS.  I've read of complications from EDS and I've read of women who had few complications.  For instance, in this survey online 47% of the respondents had EDS related pregnancy complications.


For now I have to wait.  I need to graduate with my Masters first before I can even think about actually having babies. I have doubts about ever being about to work, especially as many of my multiple conditions can worsen with age or cause other conditions that worsen with age.  For now I am baby free, and will stay longing for our own child.  I don't know how things will or won't work out.  I can only hope that someday My Love and I will have our own children, that they will be healthy, and that we will be the best parents we possibly can be.

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