About the Blog
This isn’t a personal blog, but rather a collection of information and online references related to EDS, chronic illness and, especially lately, chronic pain.
I’m advocating for better pain management, which these days usually means having access to adequate doses of opiates, our most effective, and sometimes only, means of pain control. However, this is being threatened by well-intentioned people trying to prevent addiction and the devastating consequences of the illegal use of opiates.
The problem is that medically supervised chronic pain patients are being targeted along with addicts. Statistics show that only 1-5% of chronic pain patients eventually become addicted to opiates, while the other 95% get the relief they so desperately need.
Due to misinformation being spread by the media, many people have been led to believe that opiates are “bad drugs” that have no legitimate purpose for chronic pain. I’ve posted a list of rebuttals to the most common wrong perceptions about opiates and chronic pain on my page Pain & Opiates: Perceptions vs Reality.
About Me
Until I was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, I was a high tech IT maven at Apple and Yahoo. I live in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with my wonderfully supportive husband and two 4-legged kids.
When I’m not held prisoner by pain and resting on the couch, I spend my limited energy letting my voracious curiosity loose online (knowledge =? power), writing (blog reporting, essays, poetry), trying to learn Spanish (hobby), and reading (biographies, literary fiction, Spanish language).
My essays have been published in several high-profile healthcare blogs: Stanford’s Scope, Kevin MD, Occupy Healthcare, Substance.com, and National Pain Report.
Zyp Czyk
My EDS Pain is Chronic Acute Pain
My Journey Through Non-Opioid Pain Treatments
How to get EDS Diagnosis, Pain Treatment, SDDI
My arguments for controlling the pain of chronic illness like EDS with opioids during these times of overzealous opioid restrictions:
Compelling Comment on Opioid Restrictions
My Story (shortened), posted as a comment on the CDC guidelines
To my loyal followers and visitors:
I spend so much time looking for, sorting through, prioritizing, and summarizing articles for my twice (or thrice) daily posts that I don’t have time to read other blogs consistently.
Therefore, as much as I appreciate followers, I do not return the “favor”. Instead of being a hypocrite by following everyone back and then not reading them, I’m just going to admit I only have time for an occasional peek, even at blogs I find very interesting.
In addition, this blog isn’t meant to be personal (well, I do express my opinions) or have a lot of discussion, because it’s intended as a resource. Then again…
After I crashed on my bike in June 2015, I posted only to explain what had happened and that I had to take some time off. I was flabbergasted at how many people commented, just to wish me well. And the comments kept coming, for days, for weeks. This unexpected outpouring of support cheered me immensely, and I saw that the blog isn’t as impersonal as I had thought.
To accommodate my low energy, I must remain focused on any task that needs doing and avoid time-stealing or energy-depleting distractions. I have to strictly limit my activities and prioritize my time to get anything done at all.
So I want to explain and apologize for any perceived “rudeness” from not following those that follow me.
EDS and Chronic Pain News & Info 
I feel your pain.
Literally.
Just started blogging about it because, as you probably already know, that is one of the “therapies” they suggest trying to get some relief.
Was thrilled to find your site – thanx.
LikeLiked by 1 person
I’ve nominated you for the Liebster award, congrats, you can view it here, http://theneverendingheadache.wordpress.com/2013/10/21/the-liebster-award/
LikeLiked by 1 person
@Sian Roberts – I thank you and am honored to have been nominated for this award. But I’m already saddled with more than I can get done, and that brings me to my dilemma:
I simply don’t have the time and energy these days to do more work online, even to respond properly to this award. As you can imagine, my research takes up oodles of my energy, especially since it takes me about 3 times as long as it should because of my brain fog/pain/fatigue. Because my blog is for news and information, it’s hard keep up with all the articles I have to scan every day.
As a fellow pain sufferer, I’m sure you’ll understand why I’m not up to responding to the award. It’s just like so many other things in life these days:
I wish I could, but I just can’t :-(
LikeLike
That’s more than fine no need to apologise or anything. Just wanted you to know that I consider your blog worthy of an award. I love your blog it’s very informative!
LikeLike
Hi Zyp….I know you don’t want any blog awards, and I understand why…..(it just took me over an hour to accept my own nomination by another friend and complete all the “rules”….UGG)……but I still nominated you anyway, if for no other reason than to highlight your blog name on MY blog…..I think you have to be my most favorite blog on here because you are doing such a great job in finding the most current, relevant and important information for those of us with chronic pain and illness. Do not feel obligated in any way to accept…..I understand that you cannot deal with all the “stuff” that comes with accepting an award. I had some time on my hands today so I decided to go ahead and accept this one, this time. Anyway…….congratulations and I hope that you get more blog hits after people see your blog name & link on my blog!!! Take care. ~ Julie
http://teeks55.wordpress.com/2013/10/31/honored-to-accept-this-award-d/
LikeLike
Dear Julie,
thank you so much for these significant compliments and references to this blog! You are exactly the kind of person I had in mind when I started sharing my research.
I’m thrilled that you and others are getting the benefit I’d hoped: news and info curated for folks with chronic pain. The Inspire.com forums are wonderful for connection, validation, and support, but I also want to know all there is to know about what ails me. It’s heartening to see that I’m not the only one.
LikeLike
:) Thank you Zyp! We’re in this thing together!! Keep up the great work.
LikeLike
Thank you very much for this blog. My wife and son suffer from EDS and I am so happy finding this blog that will keep me up to date on research.
LikeLike
You are most welcome! This is exactly what I had hoped – that others could benefit from my research as well. I hope your wife & son find a good doctor that listens to them, believes them about their symptoms, and works with them to create a good quality of life despite EDS.
They are already lucky to have a father & husband looking out for them as you do.
LikeLike
HI Zyp, sorry for being AWOL again….I have so much reading to catch up on. Just wanted you to know I am back and hope to delve into your articles as soon as possible. You find so many good things to read, I need about a month to do nothing but read !!!! Thanks again for your fine work researching everything and sharing with us. Hope you are doing well. ~ Julie
LikeLike
Thank you so much for all the information you are blogging on pain and it’s management and mis-management. It is encouraging, and enraging depending. I have so much brain fog, I could not begin to find, read and understand the articles you post. I used to be able to do this, but no more.
LikeLike
I’m so glad you find the blog articles useful (smile) – and I’m so sorry you notice your abilities declining.(frown). Perhaps I should be more brief in my annotations?
Best would be to write just a couple of sentences summarizing each post, but with my declining mental abilities, each one could take me hours – literally. Just managing articles, annotations, and posts is already stretching my abilities, so writing intelligent summaries is beyond my endurance.
Putting together the pieces is one aspect, but writing even brief commentary takes hours and 3-10 versions before it seems OK to let it loose on the Internet. I’m the opposite of impulsive online – I’m terrified of saying/doing something stupid, wrong, or accidentally insulting,
I’m lucky that I love to write because otherwise, I’d never have the patience to wait for myself :-)
LikeLike
Just a quick thank you from Denmark, I really appreciate your work… :)
LikeLike
Thank you so much for your lovely compliment!
I may no longer be able to hold a regular job, but I’ve found another way to make myself useful. Comments like yours give me the sense of accomplishment and gratification I so miss from my working days.
LikeLike
I’m very happy to have found your blog. You are an excellent writer. I’m a 51 year old woman with EDS (hypermobility), Chronic Fatigue Syndrome and Fibro. I’ve also been fighting for almost five years now for disability as I can no longer work. At times, it’s very discouraging, but like you and others in our bizarre boat, I keep on keeping on.
LikeLike
Thank you so much for the encouraging compliments! I’m sorry to hear you’re cursed with that trio of misery: EDS, FMS, and CFS.
These three syndromes do seem to co-occur more often than by chance, and with so much symptom overlap, it’s hard to tell what is caused by which. They undoubtedly have complicated interrelationships we’re still far from understanding.
Since EDS is genetic, while the other syndromes usually come on later in life, I believe it might be the initial problem. Then the systemic physical strain of having lousy connective tissue could leave the body more vulnerable or prone to developing FMS or CFS.
It’s no coincidence that all three are qualitative “syndromes”, not quantified “diseases”.
LikeLike
Is there a way for me to subscribe to the blog?
LikeLike
I’m glad you find the blog useful – you can click the button in the lower right column “Follow EDSinfo by Email”
Hope that helps
LikeLike
Do you know anything why prednisone is the only thing that takes my pain away? I know steroids aren’t good for you so I understand why I can’t have it regularly. But my pain is constant.
LikeLike