Thursday, August 16, 2012

2012 EDS Learning Conference Notes


Hi friends and fellow EDSers and POTSies! Here we go...may I present to you the notes and information from the Ehlers-Danlos National Foundation EDS Learning Conference 2012, held in Cincinnati, Ohio!! Hooray! I am jumping up and down with joy over here, ready to give you all the chance to learn what I did. Okay, well, there is not a bit of jumping going on externally, but in my head I am giddy as can be. The conference was amazing. Let me say it again: AMAZING. 


To be in a room surrounded by over 500 people that "get it" gave me the most wonderful mutual feelings of calm and excitement. For once, I was not the only "healthy-looking" young woman walking around in agony. I wasn't the only 30-year-old with a cane, nor was I the only person that used a wheelchair for a few hours and then walked for a few hours. (I didn't use mine at all during this trip, but many people did.) You know that weird look you get from someone when they see you in your wheelchair in the morning, and then they see you walking around in the afternoon, and they question with their eyes why you are all of a sudden "better"? Well, I do. And, there was none of it going on there. People were accepting -- what a glorious feeling -- to be accepted. 

Walking to dinner one evening, there was a group of about 10 of us, all shapes, sizes, and colors. Some of us had no splints on, other were decked head-to-toe. Some of us used a cane, some walked on their own, and some putted around in a scooter. One of my new friend's hips dislocated on the walk, and instead of it surprising anyone, we all just stopped, made sure she was okay, and helped her get it back into place. It was quite a conundrum when we got to the restaurant though, as the building was an old historic house and the dining area was up an old staircase. Can you imagine a group of EDSers trying to manage their way up a flight of stairs after walking all the way to the restaurant? It was quite comical and painful! 

EDNF took great care to schedule many talented and educated speakers, all of whom were very familiar with Ehlers-Danlos Syndrome and other connective tissue disorders, and we were treated to a vast array of sessions that included everything from spine problems to meditation. There were a handful of vendors set up, including Silver Ring Splint Co. and Left Paw Press, publishers of Dr. Brad Tinkle's EDS book. Vegan and gluten-free meal options were provided, and there was even a "relaxation room" complete with low-lighting, reclining couches, and beds. During snack breaks, they even provided coconut water for those with POTS! I have to commend EDNF for their fantastic job, and Sandy Chack for her dedication and hard work. She is one amazing woman, is responsible for putting these conferences together, and is also the mother of one one my friends. 

Coconut Water!!

During downtime, I was able to get reacquainted with old friends and make some new friends. There was lots of laughter, some tears, and just a general feeling of connectedness. I will forever be grateful for this opportunity, for the EDSer and friend who donated her ticket to me, and for the innumerable amount of information I gathered while there. I will never forget this conference. I hope by providing the following notes, that you are able to take away almost as much as I did. I know you may not have been able to attend, but I hope that this helps you in your journey as much as it will help me. Learning is always fabulous - enjoy!

Finally got to meet my darling Nakki in person...boy we look tired!

EDNF has handouts/slides from each presenter, if the speaker provided them, available on their website. In addition, I took some notes, but there will certainly be some overlap between those and the info in this post. I did try to notate things that were specific to my own body which may or may not be relevant to you. I will only give my additional notes from the sessions I went to, just things that stood out for me, so please visit EDNF for the PDFs. In addition, I felt physically better for some sessions than others and was able to write more; the notes reflect this. I don’t know if it would be best to read my notes first, read the PDFs from EDNF first, or read them together, so good luck in finding the best approach for you. Unfortunately, it may be a bit taxing either way, but hopefully you are able to find some of it useful regardless of the order. The notes below are in no particular order. And, as always, the advice I offer is just that, personal opinion. I offer no medical advice or recommendations as I am not a medical professional. I am only a specialist in my own body.

Michelle, Bettina, Robert, Nakki, Maggie, Me, and Tiffany


NOTES

Roughly 550 people attended the conference. 

There was a lot of talk about trying to change the way people see Ehlers-Danlos Syndrome. It isn’t an orphan disease as many people believe. It is not as rare as it is made to seem. Some great points were made, like the fact that when diagnoses reach one (1) million people in the United States, the Government stops giving rare disease funding, so there is hesitance to “let” the numbers get that high. It is completely pointless to deny the actual number of diagnoses for EDS though, as we know diagnoses are so important for the patient, and because the Government already doesn’t give any money /funding to EDS. Therefore, it is irrelevant. We should be pushing for diagnoses, awareness, advocacy, and research. 

Some numbers that were interesting to me (though I don’t currently have sources for these):

·         Only 250,000 people in the United States are diagnosed with MS (Multiple Sclerosis) but most everyone has heard about it and there is plenty of research being done with regards to MS.

·         Around 50,000 people suffer from MD (Muscular Dystrophy). Same as with MS, there is a lot of awareness, advocacy, and funding. 

·         EDS is estimated at affecting at least 1 in 5,000 people, male and female, which makes it possible for at least 60,000 people in the United States to have Ehlers-Danlos Syndrome – more than Muscular Dystrophy – and yet there is hardly any awareness, funding, research, etc.

BREAKING NEWS:
EDNF (Ehlers-Danlos National Foundation) is paving the way for research and patient care for EDS with plans to possibly open a new facility: the EDNF Clinical Care and Research Center, a “one-stop shop” for Ehlers-Danlos Syndrome. Nothing is set in stone yet, but things are in the works and negotiations are underway, so it is a realistic possibility. It will take time and money, of course.

My geneticist, Dr. Brad Tinkle



Random Notes from Dr. Brad Tinkle: (*My geneticist)
Phone: 847-723-7705
Address:  Advocate Lutheran General Children’s Hospital, Parkside Center
1875 Dempster, Ste. 310, Park Ridge, IL 60068

There will be a conference held in Gent (Ghent), Belgium in 2012 with all of the EDS specialists to discuss the future of EDS as a whole, internationally, and to get clarity/consistency with EDS classifications. Example: Which type of EDS is called what, what symptoms go under what umbrella, etc. This could change some classifications, which could cause some confusion for patients and doctors, but the idea is to get everyone, around the world, on the same page. They also hope to get JHS (Joint Hypermobility Syndrome) recognized as being the same thing as EDS (Ehlers-Danlos Syndrome), since according to Dr. Tinkle and others, they are one in the same. 

“The hard part: defining the various aspects of each type,” said Dr. Tinkle, “the even harder part: improving the health of all affected.” 

Regarding Imitrex (*The injections I take for migraines): Dr. Tinkle said Imitrex is not contraindicated for EDS. Dr. Levy added and Dr. Tinkle agreed, Imitrex can cause rebound migraines. This has nothing to do with EDS, anyone using Imitrex or others like it can get rebound migraines, if you take more than 2-3 times per month. If you find you need it more often than that, find something else that better controls migraines.



Bauerfeind Splints, Booth at Conference:
The representatives from Bauerfeind were very nice and helpful. Some of their splints worked better than others. My current ankle splints don’t work anymore and I found a fantastic one from them, so I will be attempting to get one for each ankle. I would definitely check them out. I will post the ankle splint information after I own them and can give you all a review.

Visit their online store to purchase items that insurance won’t cover.




Pain Management in Everyday Life, Dr. Clair Francomano:
Phone: 443-849-3131
Address:  6701 North Charles St., Ste. 2326, Baltimore, MD 21204

Recommends taking 2g Vitamin C per day. May help with building collagen, no solid evidence but won’t hurt you (your body excretes excess in urine), 1g in morn and 1g at night.

Recommends getting blood work done to check possible deficiency in things like zinc, magnesium, chromium, etc. Also make sure Vitamin D levels are where they should be.

Really stressed looking into MBSR (Mindfulness Based Stress Reduction), Yoga, CBT (Cognitive Behavioral Therapy), and Meditation.

Major sources of pain in EDS are:

                Headache, neck and back pain, muscle pain, myofascial pain, and neurological pain.

Says some abdominal pain could be caused by micro-tears in the abdomen.

Likes bracing/splinting joints because it allows you to keep functioning. 

Some bracing/therapies to try:

·         Aspen Vista collar for driving in car. Order form for docs or personal ordering here.
·         Therapeutic gloves like Imax for hands -or- hand therapist can order custom ones
·         SI Joint Belt 
·         TENS unit to relax muscles
·         Warm water therapy
·         Physical Therapist can try adding laser to relax muscles
·         Epsom salts for relaxing muscles. 2 cups per bathtub of water or 1 cup in a foot soak. Cheapest to buy online or at Costco type store. Foot soak is good for Restless Leg Syndrome as well.

Very important to stay active – shoot for 30 mins a day doing cycling, swimming, walking, elliptical. If doing weights use less weight and more reps. Even if you can only do 30 seconds of exercise, start with 30 seconds a day and work your way up very gradually.

She really, really likes this Rx transdermal pain cream that is custom made through an online compounding pharmacy, SECnet. To try it, ask your doctor to write a prescription for “Formula H plus Magnesium” and have your doctor fax it to this pharmacy. The pharmacy will custom make it for you. The gel is a combo of things like lidocaine, Volteran gel, magnesium, etc., all in one. Use 1 to 2 grams daily following instructions provided by pharmacy/doctor. 

·         http://secrx.net
·         “Formula H plus Magnesium”
Dr. Clair Francomano
·         Pharmacy Phone: 877-389-5070
·         Pharmacy Fax: 256-389-9096

Some of her patients use/like paraffin baths for pain 
in hands, fingers, wrists, elbows, and feet.

For pain try:

·         NSAIDS
·         Muscle Relaxers
·         She likes Gabapentin for nerve pain (neuropathic pain) – same drug family as Lyrica
·         Analgesics
·         Tramadol
·         Then narcotics last, but she doesn’t like them at all. Prefers only to use them short term and then get patient to use something else long-term.


 
Neck and Spine, Dr. Atiq Durrani: (*I have an appt. with Dr. Durrani in September!)
Phone: 513-281-2278
Cincinnati Office: 4555 Lake Forest Dr., Ste. 150, Cincinnati, OH 45242
Kentucky Office: 652 Rodeo Dr., Erlanger, KY 41018

This presentation focused on cervical instability in the EDS population. The lecture was very informative and I wanted you to be able to comprehend everything he spoke of, so instead of typing out all of the notes, which don't make a lot of sense without images, I found a video of a very similar presentation he did that focuses on Ehlers-Danlos patients. It is 45 minutes long, but well worth the viewing time.

A lot of people (doctors, PTs, etc.) in the spine world don’t think EDS is related to cervical instability; Dr. Durrani is trying to change this. He says they are directly related. 

Static MRIs will not show the C1-C2 instability, so Dr. Durrani recommends specialized MRIs that will show instability. (*I have most of these symptoms and have seen doctors for them before, but they have only done static MRIs. I have been told there is nothing wrong with my spine/neck/head area. I do not believe this, and it could be because the doctors I saw did not do the correct imaging.)

Common symptoms of C1-C2 instability:

·         Occipital headaches (he referred to these as headaches that start from the base of skull and move forward toward eyes, sometimes causing spots and light sensitivity, pain behind the eyes, often diagnosed as migraines, can affect vision, etc.)
·         Neck pain
·         Passing out at the extremes of lateral rotation (turning your neck very far to the sides)
·         Choking sensations
·         Base of skull tenderness
·         Jaw pain (sometimes can be diagnosed as TMJ pain or referred pain from headaches)

Dr. Durrani's EDS video can be viewed here. If you experience these symptoms, make the time to watch this video.

For anyone with EDS considering neck surgery, there is a "closed group" on Facebook if you would like to have support along the way. Type “EDS Neck Surgery” into the search field on Facebook and send a request to join the group. They prefer only EDSers going through neck surgery join, so please be respectful.



How to Communicate with Your Doctor & Build Your Medical Team, Linda Neumann-Potash, RN, NM, CBN:

There are not a lot of Dr. Tinkles and Dr. Francomanos out there, so you should focus on trying to find a doctor in your area that is an expert in their field. Look for the best doctor in your area that focuses on what you need. Seek the best cardiologist, foot doctor, etc. The best in your city. You don’t need someone that is an EDS expert, you need the best person in your city for that field and then you help educate them on EDS.

Tell the doctor that “they are an expert in their field” and “you are an expert in your body” and you want to work together to find the best solutions.

Utilize friends, family, and social media to find the best doctors in your area. 

Make sure you pick someone on your insurance plan.

Organize your medical records. Everyone will organize differently; do what works best for you. Keep in mind that if you organize electronically (keep your files on USB drives or your computer) you will need to bring hard copies or CDs to your doctor’s office. Most doctors will not allow you to put your USB drive on their computer to pull up your medical records. Make your own files, folders, etc., or use something like Dr. Tinkle’s new binder/book system.




EDS Fashion Design, University of Cincinnati, Fashion Design-School of Design, Margaret Voelker-Ferrier, Booth at Conference:

Being measured by Margaret
Fashion designers were on-hand measuring EDSers for their clothing line. Their goal was to come up with some sizing standards that most Ehlers-Danlos patients fit into so they can appropriately tailor their designs. 

Soapbox Media recently wrote an article about the project stating, "…a team of fashion designers at UC have joined with medical professionals that treat a genetic disease that affects connective tissue to change not only those perceptions, but the lives of those suffering from the condition."

There isn’t an actual clothing line for purchase yet, things are just in the design stages, and who knows if this will come to fruition, but it was very clever and wonderful. 
For more information visit their CrowdSpark page.
A vest that also helps stabilize shoulders and a jacket that keeps elbows in place.



Women: Understand, Preventing, and Managing Pelvic Floor Dysfunction, Kathleen Zonarich, PT:

Urinary Incontinence affects 68.9% of the Ehlers-Danlos Population compared to only 30% of the general population. 

Great information in the EDNF PDFs; I would recommend reading if interested. 

When getting PAP smear done, you should ask your doctor to check your pelvic floor to make sure it is alright. Also, have them show you how to do Kegal exercises correctly as most people don’t do them properly.



EDS, Fibromyalgia, & Chronic Pain, Dr. Rodney Grahame:
Phone: 020 3447 9281 
Email 
Location: London University College Hospital

This was an excellent keynote session. Dr. Grahame, read mostly from the EDNF PDF handout so I am not going to type it all out for you. I recommend reading it and also bringing a copy to your rheumatologist. He refers to EDS as “The New Rheumatological Disability” and there is a lot of info that would be great for you and your doctors to read, especially if you need validation for your pain and ailments or need to “prove” to your rheumy that what you are feeling is real.

Resting in the Relaxation Room with Nakki.


Sleep Disorders in Ehlers-Danlos Syndrome, Dr. Alan Pocinki:
Phone: 202-223-2283
Address: 2141 K Street, N.W., Ste. 600, Washington, DC 20037


Dr. Pocinki, an internist that also focuses on sleep disorders in patients with EDS and Dysautonomia, did a very similar session during the 2010 EDNF EDS Conference but I wanted to go over the material again. He is a very wonderful doctor, and EDSer and POTSy friends that have seen him at his practice really like him and recommend his advice. The presentation was just as good this time around, but very hard to take notes in. The PDFs do explain some stuff, but I feel he is easier to understand when in person, so I found a video of him doing a similar lecture for you to watch, which should prove just as helpful. I would use the notes as a guide while following the video. It would be good info to take with you to the doctor you see for autonomic disorders, your POTS specialist, sleep specialist, or even just your general physician. He really gets to the nitty gritty of how every aspect of your life affects your sleep, and how sleep affects every aspect of your life – the sleep-pain-emotion cycle.

A few random pieces:

·         Treating Dysautonomia will help with sleep
·         Don’t “push through” fatigue; take breaks
·         Work on getting a good pain management system in place
·         Make sure to get enough salt and fluids
·         Work on coping with emotional stress
·         Get a good mattress
·         Keep it quiet and dark
·         No pets in the bed (*We’re guilty of that in my house, though I am not sure I am willing to change that!)
Dr. Pocinki has great med ideas in the handout for helping sleep
·         Does not like “traditional” sleep meds like Sonata, Lunesta, Ambien, etc.
·         Restless Leg Syndrome: can try magnesium and sleeping in plantar fasciitis splints

Dr. Pocinki sleep video is available to view here.

In addition to the sleep information, Dr. Pocinki wrote a great short piece on EDS/JHS, an overview of the disorders. If giving a doctor or family member Dr. Tinkle’s Book on EDS is too much, too long, they won’t read it, etc., you could try giving them this article. It is brief but does a great job summarizing the basics.   

Nakki's caught between the zebra sheets!


Living at Home with EDS, Marnie Renda, OT:
Email 

Quick notes from the session:

·         Move the body in ways that it reduces stress and enhances physical capabilities

o   Use a neutral body position
o   Try not to reach, twist, or lean

·         Use joint protection techniques to reduce strain in everyday tasks   
       
o   Use power grip (whole hand not fingers to pick things up, etc.)
o   Use power lift (lift heavy things with two hands)
o   Buy smaller, less-heavy items (Half-gallon vs. gallon)
o   Slide items instead of lifting, push or pull instead of carrying 

·         Be ergonomically-minded

o   Try Oxo products or other ergonomically designed products

·         Modify home for safety, comfort, and independence

o   Install higher toilet
o   Install touch faucets ($350 Delta Touch2O is amazing for disabilities)
o   Avoid knobs on cabinets, use pull handles instead (Use whole hand to open, not just a couple fingers)
o   Toilet paper holders that lift up or slide instead of traditional ones
o   Bidet (replacement seat with bidet attached, $350 gets you a nice one with temperature control, remote control, try Coco.)
o   Lighting – touch lamp converter or motion activated switch ($10-$20)
o   Hand-held shower head

·         Use universal design (design of products and home works for those with or without disabilities) 

o   Barrier-free showers
o   House entry with no step
o   Dishwasher up higher 

·         Contact Home Modification Occupational Therapists for help

·         $7500 Grant that is being given away to someone for home modification, contact Marnie for details. Deadline is approaching.

My friend Robert and I catching up.


It’s Not in Your Head – Or is It?, Dr. Howard Levy: (*The geneticist that diagnosed me!)
Phone: 410-583-2774
Address: 10753 Falls Rd., Ste. 325, Lutherville, MD 21093

This was a fantastic lecture, definitely a must-read. It was hard to take notes quick enough though, and Dr. Levy talks very fast, so I hope they make sense. I’ve done my best transcribing them.


On a good day = pain affects you less
On a bad day = pain affects you more

Common emotional states in EDS:

·         Anxiety & depression
·         Low self-confidence
·         Negative thinking
·         Hopeless/Helpless (thinking the medical profession won’t help)
·         Desperation
·         Low self-efficacy (thinking “I can’t help myself”)

Thoughts and beliefs:

·         “Pain will harm me.”
·         Intense self-awareness/hyper-vigilance
·         Thoughts of waiting for "next shoe to drop"
·         These sorts of thoughts just amplify next pain experience
·         Note: Responses like these are similar to cancer survivors, common in EDS

Expectation management:

·         High-Bar thinking would be like: I will have no pain, no dislocations, I will perform normal activities.
·         Actual: I will have some pain, I might dislocate something, I will perform within my limits.
·         Low-Bar thinking: I will be in terrible pain, I will dislocate all of my joints, I won’t be able to do anything.
·         Learn to stay in Actual (Realistic) expectations instead of High or Low-Bar.

Injuries to social relationships:

·         Disbelief or lack of concern by friends/relatives (about your illness)
·         Reduced ability to socialize (because of illness, like you are physically unable to go do things)
·         Resentment/distrust/hostility between patient/family/healthcare team
·         Feelings of marginalization, isolation, despair

Memories of past injuries:

·         Fear of pain and/or joint instability
·         Anticipation of negative experience
·         Avoidance behavior (won’t do something because of fear of getting hurt)
·         These thoughts just exacerbate dysfunction and disability

Emotional State of “close others” (Partners, parents, siblings, close friends, etc.)

·         When they feel fear, anger, disbelief, distrust, anxiety, depression, you can end up feeling that way too
·         Even if you are calm but your “close others” freak out, it can cause you to freak out
·         Have to learn ways to cope with this

How/Why???

·         Probably not completely understood why this happens
·         Pain/emotion co-localize in brain
·         Endorphins can help (they are induced by emotions and exercise, they modulate pain and are natural opioids)
·         Centrally acting meds can help (opioids, sedatives, antidepressants) 

Complicating factors:

·         PTSD – actually causes pain and until you deal with the PTSD you can’t treat everything else
·         Resistance to accepting psychological etiology (Don’t want to believe any of your pain is psychological) – usually response to prior misdiagnosis and accusations (“it’s not in my head, it’s real”)

Therapies that can help:

·        Build/repair relationships with healthcare providers – clinicians must believe pain and other symptoms are real (validate them) and vice versa (patient must believe some pain is psychological)
·         Focus on chronic rather than acute pain management
·         Establish reasonable expectations (not High or Low-bar)
·         Try distraction (anything – playing with animals, music, movies, etc.)
·         Hypnosis can sometimes help (patient must be willing)
·         Meditation can help

Counseling can help:

·         For depression, anxiety, PTSD
·         For accepting, coping, and living with pain and disability
·         Consider thoughts and feelings of close others (remove negative people from life if possible or work on patient’s response to those people if they can’t be removed)
·         All of these require the patient to be accepting and willing to try

CBT (Cognitive Behavioral Therapy) can help:

·         Learn to cope with pain: Accept pain, release it, move on
·         Can improve pain, disability, and mood
·         Requires active patient participation
·         Can help with unhelpful thoughts like “Pain means damage,” “If doing something hurts, I should avoid it,” “It’s hopeless; I should just accept I’ll end up in a wheelchair.”

Final thoughts:

·         Counseling works toward positive
·         Antidepressants have a place
·         Keep the see-saw under control if you have EDS, Pain, and Bipolar Disorder (you don’t want to stop ups and downs, just try to keep them from tipping too far either way)

My EDSer and POTSy friends from Canada!


Vascular Problems in EDS, Dr. James Black III:

Of note: Vascular problems are underreported in the non-vascular types of EDS

New in 2012 for vascular complications with EDS:

·         Endoscopic catheter procedures are more recommended to address vascular issues
·         Additions of low-dose beta-blockers
·         Multi-disciplinary evaluations by geneticist, anesthesiologists, and surgeons (all should work together)
·         NO stent graphs for EDS patients
·         Liberal use of adjunctive techniques to reduce operative trauma in the endovascular and open setting


It's so fun meeting EDSers from Facebook!


More than Just a Pill, Dr. Anne Lynch-Jordan:
Cincinnati Children’s Hospital, Pediatrics Department Psychologist
Phone: 513-636-4336

The presentation described how CBT is a very useful tool for pain management. I took notes that go along with the PDF, but I do feel they are fairly comprehensive. You could refer to the PDF for exact wording and charts, but I tried to outline a lot in this entry. I really like the idea of CBT for pain management.

(*I am currently in therapy/counseling for PTSD. We are using a lot of CBT techniques, but are focusing only on the PTSD and childhood trauma. I talked with Dr. Lynch-Jordan after the session and she recommended that I seek additional counseling for pain management. She said I need to learn to focus on pain management with CBT designed specifically for pain control and it becomes too complicated for patients to take what they learn in PTSD counseling and utilize that themselves for pain management. I agree. I am having a hard time just utilizing the skills I am learning in PTSD counseling, that I would be overwhelmed to try and add pain management just myself. I would prefer to have guidance by a pain management CBT doctor or therapist. Her recommendation is two different courses. One long one where we work on PTSD (where I can continue to be treated as long as necessary), and one tailored to pain management that is a “typical” pain CBT course which tends to be around 8-12 weeks.)

CBT (Cognitive Behavioral Therapy) has a lot of impact on pain as well, not just depression and anxiety.

In EDS, CBT in combo with rehab (PT, Pain Management, Exercise, Sleep Therapy, etc.), has the best outcomes for people, as opposed to just treating EDS with medications.

People who use CBT eventually use less medication, so the result can be more cost-effective treatment.

Nothing is a magic wand, but CBT can provide tools.

Goal is to take some of the “mystery” out of pain so it takes the fear out of pain.

Relaxation Training:

·         Diaphragmatic Breathing –
o   Promotes a parasympathetic response (reduced blood pressure, muscle tension, heart rate, etc.) 

·         Progressive Muscle Relaxation –
o   Reduces muscle tension and promotes body awareness

·         Autogenic Relaxation –
o   Parallels meditation techniques and focuses on desired autogenic response
o   You could tell yourself “My arms are warm and tingly” over and over and your arms will become warm and tingly. This is good to help yourself relax.

·         Imagery/Visualization –
o   Pleasant mental images designed to distract away from pain or distress.
o   Nights are hard. During the day you are distracted, but nights you are less distracted. This is the time to take a mental vacation. 

·         Mindfulness Meditation –
o   Meditation with a focus on calm awareness of the present moment and acceptance without judgment of bodily sensations and emotions
o   Newer: Notice what body is feeling but tell it not to judge it
o   My flank hurts. Okay, be aware. Accept it. Don’t judge it. Release it.

Behavioral Activation and Regulation:

·         Two types of behavioral problems are common but equally problematic:
o   Cycle 1: Under-exertion
§ Fear of pain, avoidance, disuse and deconditioning of body, disability
o   Cycle 2: Over-exertion
§  Usually high levels of activity, task persistence, disability

·         4 Type of Activity Patterns:
o   Avoiders: Lots of mood problems
o   Doers: Tend to feel lots of acceptance, do lots of activities, but at a high cost to body and mind
o   Medium Cyclers: In-between
o   Extreme Cyclers: High levels of disability, High levels of mood problems, go between doing too little and doing too much, hurt the most of all the patterns (*This is ME!)

·         How do you stay consistently active throughout the day, but break it up so you don’t collapse?
o   Figuring this out is a way to get your disability under control
o   Take breaks, but before your pain is out of control
o   “Proactive Approach”
o   Take intermittent breaks often. Even when you are feeling great, you must take breaks, this way you keep yourself at optimum activity levels always, and keep pain manageable.
o   This is more emotionally satisfying because you get stuff done and feel better because of it, but you don’t wear yourself out to the point of so much pain.

Cognitive Modification:

·         Impact of thoughts is HUGE

·         Thoughts impact all aspects of life: emotions, actions, physical symptoms

Methods of Cognitive Modification:

·         How do you neutralize thoughts to get through the moment?
o   Identify negative beliefs and attitudes:
§  Black-and-white thinking: fortune telling
·         “I cannot function when I’m in pain”
·         “My health is hopeless”
·         “I’m never going to be able to cope with pain”
o   Create calm, supportive self-statements:
§  “My flare-up won’t last forever”
§  “I can get through this”
§  “There are still good things in life”
o   Examine worries:
§  “In 5 years, will I remember (or care) about this worry?”
§  “Do I know for sure it will be as bad as I anticipate?”
§  “What is the worst that can happen?”

Rehearsal and Maintenance:

·          Having a PLAN in place

·          Regular practice of techniques:
o   Promotes conditioned re-training of physiology
o   Serves as a preventative mechanism
o   Prepares for effective use during flare-ups

·         Relapse prevention:      
o   Important to prepare for potential flare-ups
o   Engage problem solving skills in anticipation so disability does not become extreme

Additional Techniques to Help with Pain Management:

·         Biofeedback
o   Biofeedback is computer equipment that shows you how your body is responding
o   It attaches to your body
o   Teaches you how to understand what your body is doing in response to things
o   Does not alone reduce pain, but can help if combined with other methods like relaxation, CBT, etc.
o   Gives one “sense of control” over body

·         Hypnosis
o   Simply a deep relaxation technique with guided positive coping statements
o   Not what you see on TV
o   Sometimes hypnosis alone is better than nothing, but one doesn’t really need it if doing other things like CBT, relaxation, etc.
·         Yoga
o   (*I ran out of time in this session, oops! I have a great post on yoga that works for me, though, so check it out here.)  

Darla (the reason I got to attend!), Me, Renee, and Kat


Foot and Ankle Issues in Collagen Vascular Disorders, Dr. Patrick Agnew:
Phone: 757-525-0414


I took very few notes from this, so I will just give you what I have. You can refer to the PDFs if you need any other info.

Not all EDSers pronate, but pretty much all EDSers have flat feet.

Osteogenesis Imperfecta = bones are brittle

He’s seen a lot of patients that have EDS and lax tendons, but they have very short and tight calf muscles and tight Achilles tendons. This is why sometimes people with EDS cannot bend over and touch the floor, because everything else can be lax, but the hamstrings, calves and Achilles can be tight. (*This is ME! I am an 8 out of 9 on the Beighton Scale because of this!) Night splints can really help the pain caused by this. Look for the splints for Plantar Fasciitis and sleep in the splints.

If you have overly flexible joints, it is easy to get arthritis.

Arthrodesis = fusing joints of foot together = mediocre results in patients with connective tissue disorders, he does not like doing this

Arthroereisis = limiting motion in joint
·         Dr. Agnew is really intrigued with ligament replacement in connective tissue patients
·         MBA arthroereisis = his clinical evaluation has been positive
·        Subtalar arthroereisis (he spells it arthroresis) = implanting a piece of metal into the hole in the foot/ankle to limit motion. He really likes this and has had positive results with EDS. This should not be used to correct the arch, only to limit range of motion. There are lots of photos in the PDF of the implants.

Dr. Agnew talked about ankles rolling inward in his presentation, but my ankles roll out. I talked him after the session about his recommendations for keeping the ankle stable. For me, he recommended orthotics (which I do wear).

Prognosis = people will not grow out of these over-pronating issues when they have connective tissue disorders. Kids will not grow out of them. They need to be addressed.

Orthopaedist or Podiatrist = It doesn’t matter what their specialty is. You want to find the doctor in the area that is the best for treating feet, it doesn’t matter the letters after their name.

 

Aquatic Exercise: Benefits and Principles for the EDS Population, Kathleen Zonarich, PT:

Definitely check out the PDF if you want info on aqua therapy/exercise. I did not attend this session but I did in 2010. The PDF has great notes, instructions, and photos.



Tai Chi for Ehlers-Danlos Syndrome, Ralph Denner:

I attended this session but couldn’t participate in a lot of it because it was hurting my knee too much. I did, however, go borrow a knee splint from the booth selling them in order to complete the session. The knee brace didn’t help much though, as it wasn’t the right one for my knee issues, and my knee is still in awful pain a week later from this Tai Chi class. I love the concept of Tai Chi, and there is Tai Chi people can even do from a wheelchair, so there are options out there. I would recommend that if you do Tai Chi, that you are splinted/braced and very conscious of the stress you are putting on your joints. It is supposed to be low-impact, and it was, but this specific class wasn’t appropriate for me. I will not rule out future Tai Chi, just keep that in mind if/when I look for a class/home practice instructions.

My plan must also include NOT falling out of chairs! Ha!

My Plan:
In summary, there is a lot of information to take in and it all is a bit overwhelming. These are the things I will focus on:

1.       Purchase (trying to get insurance to pay for) ankle splints when I find a doctor who will prescribe them. MalleoLoc Ankle Brace. I got sized already; I am a size 1 on both the left and right ankles. I will get a doctor to write a Rx for the exact splints and send it to the rep.
2.       Increase my Vitamin C to 2g per day, 1 in the morning, 1 in the evening (Dr. Francomano)
3.       Get more blood work done to check magnesium, Vitamin D, chromium, manganese, etc.  (Dr. Francomano)
4.       Seek new yoga practice here in Ohio (I have a few I am looking at)
5.       Look into MBSR and CBT for Pain Management (Dr. Francomano, Dr. Levy, Dr. Anne Lynch-Jordan)
6.       Get an Aspen Vista neck collar for driving in the car (unless neck surgery is an option) (Dr. Francomano)
7.       Wear my soft neck collar or get Aspen Vista collar to sleep in at night (Dr. Durrani)
8.       Purchase Planter Fasciitis splints to sleep in to help Restless Leg Syndrome (Dr. Pocinki and Dr. Agnew)
9.       I have already scheduled an appointment (Sept. 2012) with Dr. Atiq Durrani at C.A.S.T. to evaluate my cervical instability and see if I am a candidate for C1-C2 Fusion surgery.
10.   Start using my TENS unit for muscle relaxation (I have only ever used it for building muscle, but I have heard great feedback from other EDSers)(Dr. Francomano)
11.   Start doing Epsom Salt baths again (I had stopped) and foot soaks
12.   Get a Rx for “Formula H plus Magnesium” (Dr. Francomano)
13.   Look through Dr. Pocinki’s list of ideas and talk to my doctors to re-evaluate sleep management plan (try new meds and such)
14.   Buy smaller, less heavy items, and push/slide instead of lifting/carrying (Marnie Renda)
15.   Talk to PCP during next PAP Smear to make sure I know how to do Kegal correctly, and start doing Kegals (important to me because a family member needs a vaginal and rectal lift, and I can avoid this by proper proactive care) (Kathleen Zonarich)
16.   Organize medical records (I currently have a system but I am changing it) into my new binder (Dr. Brad Tinkle)
17.   Continue to look for some form of pain management doctor here in Ohio that will help me (been an ongoing process, I will post more about it later)
18.   Look into other ways to manage fatigue and Dystautonomia (IV fluids – a few EDSer and POTSy friends use them and they are really helping)


And that's a wrap! (Zita, Tiffany, Bettina, Maggie, Me, and Darla laying across us)

 
xo
dani

23 comments:

Darla Allen said...

egad with the Canadians. what fun we had. LoveLoveLove you each and all.

Anonymous said...

You're the best Dani :)
Thanks for everything !!
- Robert xoxo

laura oshaughnessy said...

Thanks for sharing your experience! I think we attended many of the same lectures, but you caught several things I missed!

And I think I saw a picture I took :)

Your fellow Canadian-adoptee - Laura O'Shaughnessy

Vegan Danielle Davis said...

@Laura O - glad even though we went to the same sessions that you were able to get some info out of my post! Phew! Hopefully it helps you remember all of the stuff we were told. It was a lot to take in! ;) As for the pics in this post, they all came from my camera, but I am sure we all got very similar shots - there were only so many angles to catch everything in! Ha! Lots of love to you!

Everyone else - you all are welcome and lots of sunshine and hugs to you!! xoxoxo

Anonymous said...

Caught ur sight not too long ago looking up some bipolar stuff... Not familiar with your disease however my mom has a disability and is unfortunately on lots ofeds. She walks with a cane and has good days and bad ones. Because of LEDs her liver is 5 times it's size and her kidney 3 times it's size. When her grand kids ( like pets for some and like her cat when it was alive) are around she says it's Easy to ignore her pain. However afterwards she can't get out of bed for days. Something you wrote struck me. ... How people don't understand that you may feel well one minute and be able to walk then need a cane later and people do not understand. My ex saw her and told me that she didn't understand why I said my mother was in bad health cause she was fIne and she treated me like I made up my moms problems. It took my parents two years of fighting for my moms disability and I have met perfectly healthy individuals who got disability for nothingore than not being able to hold a job cause they can't mentally stand people. It makes me mad when my mother and others like her ( for many different reasons) can't get what they deserve without a fight. I see you have the same problem. I should have left my girlfriend when she said that. But I stayed cause I was insecure. I stayed till she cheated and stayed angry for so long it was impossible see straight. Fortunately I'm not straight so that doe t mattering now. As angry as I was it took a few years but was a blessing in disguise. I found myself and I found real love. But I still have issues believing I stayed with someone who was so insensitive about my mother.

Your so upbeat and have such a good outlook with all u go thought. How do you deal when people can't accept your illnesses!!!

Anonymous said...

All the word that don't make sense above is meds.

Anonymous said...

Hey! Your notes are awesome! I attended several of the same sessions; while reading I felt like I was "re living" them!
I especially liked your plan. Mine is similar except Dr. Darrani recommended the MiamiJ neck brace for me!

Thank you for everything!!!
:)Michelle E. from Texas

Madora Pennington said...

Thanks, that was GREAT! I almost feel like I was at the EDNF Conf. I subscribed to your blog. I have one about how I manage my EDS.

www.lessflexible.com

Looking forward to exploring your blog more!

Jenna said...

Hi Danielle
My name is Jenna, you are an inspiration, a hero and you are beautiful. One of my diagnosis is BiPolar
I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.
I wrote this poem
Each of us are Special
Each of us different,
No one is the same
Each of are us are unique in our own way,
Those of us who have challenges, we smile through our day.
It doesen't matter what other's say
we are special anyway.
What is forty feet and sings? the school chior
http://www.miraclechamp.webs.com

Anonymous said...

Thank you so much for the precious time, effort and energy you put into this. I attended quite a few conferences, and was lucky enough to have been originally welcomed into this group by our long missed angel, Nancy Rogowski.

I am one of those people with everything pretty much wrong, and no support. My failure to be perfect seems to be an embarrassment to my family, and they don't speak with me, or consider me or my situation at all. To be honest, lately I've had to really try to just get through each day. I'm quite sick, and basically existing. We would treat our pets with more kindness.

Best part is that I am a Rehab. Consultant, loved my work, helped many, and committed to trying to do more. So rather than only focus on an individual, focus upon the community, businesses, and the gains they'd make, aside from no longer breaking a vast mess of laws, they can be leaders, and recognize how many people would be loyal as a result of their concern for their communities. Nutshell, I keep getting sicker and then more isolated. There's a long(er) story, but the bottom line is that I thank u for making today a little easier to get through.

Thanks for reading this, and I wish you all my best. Please remember, I am a rehab therapist/consultant, and would be happy to try to help out anyone if I can... Laws, resources, rights, support...

Gentle hugs.

Eli said...

Hi Danielle.

I left a comment on your silver ring splint entry a while back.

Well, I went back today to get four more, and the guy who I initially worked with was out, and instead I got a cute little pixie of a girl. And rather than just cut the bags open and throw the away like he did, she handed them to me to open. And that's when I saw that instead of the bags reading "Siris", they read "Patterson Medical - Sammsons Preston". And damn, did that explain why none of my splints fit. They always slipped off at the slighted little movement and now I knew why-- they weren't what I event ordered. They were a knockoff. And my former tech couldn't even listen to me correctly because he ordered the wrong knockoff splints. They were supposed to be the thumb stabilizers, and they ended up being more of the same 'v-stabilizers' which are like Siris' swan-neck splints, only crap.

Well. My new adorable pixie-girl tech is going to order me a sizing kit from Siris and hopefully I'll now actually get what I bloody-well need this time. My fingers hyperextend terribly and these stupid v-stabilizers don't do a damn thing for them.

I thought I'd put this here for anyone who's trying to obtain Siris ring splints. It wouldn't surprise me if other orthodics companies have tried to substitute the Patterson v-stabilizers for the Siris swan-necks. They look identical. But the v-stabilizers are awful. They're too big round the bottom ring and too wide round the top ring. All around, they're completely not worth paying for, and I'm so disappointed that I was tricked into buying four.

misspiggy said...

Wow, thank you so much for sharing all of this - I hope your hands weren't too screwed up from the typing! The cervical instabiity lecture in particular was mind blowing. Wish I could have known all this years ago.

Lala said...

Wow, this is wonderful information! My daughter, who is 12, has so many problems related to her EDS with dislocations, pain, and other injuries etc. It's hard to find the right answers, and it looks like you landed in the best support group! Wonderful :) Very encouraging. We are trying to get in with one of the Drs you mentioned. My child has a low back or hip injury that we are stumped to figure out what is going on. Thank you for posting all of this!

sandy said...

Hi Dani. That was a great conference.

Like you, I can't do land-based tai chi b/c it hurts everything, especially my knees, but I can do water-based ai chi. Yup, Ai Chi. It's amazing. It's the single most helpful wellness activity I've ever used.

Water removes about 80% of our weight, so we do not feel the effects of gravity. We can move within our natural range of motion without ripping anything.

I am so fortunate to have a local warm-water (92degrees) pool that uses salt and UV light instead of chlorine. Can you find any place in your area that offers ai chi?

Also, one of the most basic hints for pain reduction is to stay hydrated. I used to forget to drink enough water, because I was so used to my mouth and throat hurting anyway (due to fragile gums & chewed up cheeks) that I didn't realize I probably was thirsty too. I started drinking more water after I ran out of vitamin C capsules and instead opened a jar of Vit C crystals that have to be mixed into a small glass of water. So now I drink Vit C water shots throughout the day, and it's really helping.

Sandy

Wayne Parker said...

Looks like a great conference. I wish I could have attended. http://medicineshoppeparkridge.com

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