Joint Hypermobility and Joint Hypermobility Syndrome By Alan G. Pocinki, MD, PLLC
Once I read this, a few things clicked into place for me, diagnosis-wise.
It would appear that the digestion issues I've been experiencing could be due to high levels of adrenaline. The adrenaline cycle is a vicious one though.
"Many of the autonomic nervous system problems associated with hypermobility are characterized by an "over-response" to physical and emotional stresses, which often leads to fluctuations in heart rate and blood pressure, as well as digestive and respiratory symptoms. Sickness, pain, emotional stress, and even fatigue itself can raise adrenaline levels, and acute stresses can trigger adrenaline surges, leaving you jittery, anxious and even more exhausted. Worse, such surges can trigger an excessive counter-response, causing nausea, sweating, lightheadedness, diarrhea, and of course, even more fatigue. Even sensory stimuli, such as bright lights or loud noises, can trigger an exaggerated or over-response, causing sensitivity to light and sound."
"...when hypermobile people try to fall asleep, the stimulating effect of their extra adrenaline may keep them awake. If they are able to fall asleep, they may continue to make too much adrenaline overnight, giving them a shallow, dream-filled sleep, so that they wake feeling unrefreshed. Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or increased number of sleep-disrupting "arousals." Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse. This vicious cycle can eventually cause serious disability."
So, the fatigue, adrenaline, pain, adrenaline, fatigue cycle continues unabated until you burn out, or potentially damage your adrenal glands. It's a positive feedback loop (if you can remember high school chemistry), and the worse it is, the worse it will continue to get, until it is interrupted. Most doctors would first recommend changes to diet, exercise, and sleep patterns to see if that would help balance things out. Since a lot of EDSers have problems when they change their diet and exercise, and are mostly unable to get restful sleep, the next course of action would be some sort of beta blocker, in combination with a nighttime pain reliever, which will help to break the cycle starting with adrenaline, which should then allow for restful sleep, leaving you in less pain when you wake refreshed.
Now all of this may sound wonderful; start me on some beta blockers, and I should be fine, right? The hardest part will be to find a doctor willing to prescribe them to me. Also, finding a doctor willing to diagnose me with POTS (tilt table test). And have an upright MRI of my C-spine (to conclusively check for Chiari).
Ugh...
I can see the silver lining, but it is surrounding a very large, dark and ominous cloud.
Google sucks now
3 weeks ago
11 comments:
thanks for adding "the ehlers-danlos blog" to your blogroll!
Upon reading Dr. Pocinki's article, we are concerned that he may be mis-diagnosing his patients. EDS does not require loose skin--and the cardiovascular problems can occur in hypermobility type patients. Moreover, he ignores other well-known disorders which can be co-morbid with EDS, including POTS, mitral valve prolapse, aortic aneurisms, and possibly chiari malformation. For someone voted one of Washington's best surgeons , it would have been nice if he had done a little more reading. We worry that some of his "hypermobile" patients are hypermobile because they suffer from a serious, degenerative, genetic disorder--Ehlers-Danlos Syndrome. And, that those patients may be in need of much more specialized care.
Anonymous,
The article never says anything about "loose skin." It does mention that people with EDS Hypermobility have loose joints, and velvety soft skin. Which is generally true. The article also DOES mention that people with EDS often have POTS.
He very clearly states that there are different types of hypermobility, and that the different types each have different severities within them, and require different treatment options based on severity and type of symptoms.
I don't know what article you read, but it certainly wasn't the one I linked to.
I find this completely fascinating, as I have EDS and sleep apnea. I'm on a CPAP machine and yet my sleep is still terrible. I have a hard time getting to sleep, and I have a hard time staying asleep. How does one have their adrenal levels checked, or would that do anything at all? I'm not sure I could convince my doctor to give me beta blockers either.
Telephonoscope,
I'm not sure exactly which tests would be necessary, but it's possible a simple blood test could suffice. I am currently in a position where I am unable to talk to any of my current doctors about much of anything. They either don't listen to me, or assure me that it's all in my head.
I am hoping that once I see a cardiologist, I can request a tilt table test to see if I have POTS, and if I do, I will hopefully be able to convince someone to put me on beta blockers.
My current sleeping situation is that I was awake for about 40-42 hours, then I slept for about 15 hours, and I've been awake now for about 12 hours. The insomnia hasn't been bad for me for a while now, but this last couple of days has been interesting. It's usually consistent, bad sleep. There was a time I was on a 36 hour day; 12 hours asleep, and 24 hours awake, which seemed to agree with me. Now it's mostly 3-6 hours of sleep per night, and the rest of the night is spent tossing and turning, or staring at the ceiling.
I wish you the best of luck finding answers, and I hope that your doctor is more open-minded than mine seem to be.
I just want to say thank you for verbalizing all of the things my husband is going through. A lot of the things in your blogs are too familiar. It took nearly a year for him to be diagnosed with EDS. We had to fire our family doctor after she threatened to commit him (she thought anxiety was his problem). We finally found one who still knows very little about EDS but at least will admit that a person knows his own body. Now he's awaiting his neurology appointment for the twitching and shaking. After your latest blog, I am thinking of consulting with one of my chiropractor friends regarding some adrenal support supplements for him.
Thank you so much for writing this and including the link to Dr. Pocinki's article! It explains SO MUCH that I have been dealing with, including what was diagnosed as panic attacks (the adrenalin reaction), noise sensitivity, tendinitis, disc problems, and so many other physical symptoms, as well as the inability to find a doctor or even a pain clinic willing to take my symptoms seriously. There is no specialist anywhere near my town who knows anything about this disorder so I am still on a quest for some medical professional, somewhere, to actually believe me and agree to treat me instead of referring me for psychotherapy. The article gives validation to dozens of things I have been telling them for so long. Hopefully if I bring it in to show these symptoms are all related, someone will listen.
Thanks again. Sorry about the anonymous posting; it wouldn't recognize my openID.
Great Blog, I was diagnosed with EDS at 13 and reading your blog makes me feel like I am not alone. The drs in my area are not educated about EDS, many have never heard about it and so, I receive the same "it's all in your head" explanations for my symptoms. I am going to mention your blog to them - maybe if the read it and see that I am not crazy they will be more motivated to see ifg they can do something about it.
Take Care.
S
Not sure if you all know yet how adrenal testing is don because this blog is from a few years ago... but my daughter just had the test last week. She is an EDSer (HEDS) who suffers from POTS, Chiari, Cranial Cervical Instability. The test was ordered by her awesome Cardiologist (the 1st 4 were terrible so we kept looking) done at the infusion center at our local hospital. They do a blood draw, then inject Cortisol (i believe that is what it is called) and then recheck blood through a blood draw 30 minutes later. That's it. ;) Hope this helps. NO ONE at the hospital had ever heard of this test. LOL! Our Cardio is a GREAT ONE!
And yes, even big institutions don't know about these disorders yet. They will tell you it's behavioral, psychosomatic or straight out hypochondria. UCLA & Children's Hospital Los Angeles misdiagnosed my daughter & tried to put her on ANTI-PSYCHOTICS. I kept pushing. She already had her EDS diagnosis from Cedars-Sinai and we ended up getting her POTS diagnosis from a proper tilt table test at UCIrvine, her Chiari & CCI from The Chiari Institute in New York & Dr. Henderson in Maryland. Dr. Francomano is the #1 EDS expert in the whole world & is in Maryland. If you have these problems... Google the Docs i have provided. They are the best in the field. They have many videos posted that explain symptoms etc. Educate yourselves & spread awareness, as awareness helps us all & will eventually lead to a cure. Much love to you all!
This article answered so many unanswered questions for me. I am awaiting a formal diagnosis for EDS and my little son is suffering from the effects. The over-stimiluation and also the part on sleep really helped me understand how much EDS is a part of me.
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