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

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.  

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