It has been a while, thanks for your patience with my delay in posts! Summer months are especially difficult for POTS, the back pain I typically experience has gotten exponentially worse, and the general ‘bad days’ are abound; though, I have had my fair share of summer fun keeping me occupied, as well! And, I am sure you can relate: when I have a good day (or even some good hours) after a stretch of bad, the last thing I want to do is sit in front of the computer and type! On to the excitement…
Meeting the wonderful Dr. Brad!!
In July, I had the pleasure of attending the Ehlers Danlos National Foundation‘s EDS Learning Conference! This wouldn’t have been possible without the kindness and generosity of some amazing friends and family who donated and allowed me this opportunity! I am so grateful for each and every one of them. (Thank you!!!) It was truly one of the most amazing experiences; there is nothing like a room full of 500 people that understand exactly what I deal with! It was a very validating and surreal weekend. I met many amazing EDSers and POTSies, met some of the most incredible researchers, doctors and therapists who are continuously working hard to increase EDS awareness, treatment options and research, and attended many lectures and presentations on a variety of topics which provided much needed information.
The weekend started off with a welcome reception, was followed by two days of lectures, and wrapped up with a wonderful banquet. It was held at the Renaissance Harborplace Hotel in downtown Balitmore, MD, which provided a lovely backdrop and great things to do around the hotel. Admittedly, I only got out for an hour before the conference to check out the area, and the rest of the weekend’s downtown was spent relaxing and recovering in my hotel room, but the hotel was very nice and I think we all really enjoyed ourselves! I learned more than I thought possible and look at this conference as life-changing, eye-opening, and hope inspiring!
Inner Harbor, Baltimore, MD
I will surely be referencing the conference more in upcoming posts, but I wanted to dedicate this post to information I gathered while there. I decided to make an outline from the notes I took at each lecture, and hopefully they will make sense as you go through them. The notes are grouped together by presenter, and if you have questions about the content, please post them below so I am able to respond. It was very difficult to compile this all so it is understandable by each reader, but I think it makes sense! I hope you find this to be of benefit, especially for those of you unable to attend the conference.
Finally met my friend, Christa, face-to-face!
Much love to all of you! May this find you high in spirit and low in pain!
Ehlers-Danlos Learning Conference 2010, Baltimore, MD (EDNF)
EDS: What’s in a Name?
Lecture by Dr. Brad Tinkle
-Night-time leg pain in children
-Chronic knee, hip, and joint pain
-Comorbidity: Fibromyalgia and Depression
-Disability in adulthood
-Older adults are less hypermobile
-Vascular problems (this is not the vascular type of EDS, rather vascular complications for HEDS):
-Risk of rupture: Don’t know long-term rates
-Don’t know extended risk
-A major vascular complication of EDS
Comprehensive Pain Management
Lecture by Dr. Francomano
-“Pain is whatever the person having it says it is.”
-Highly subjective, often leading to undertreatment
-May not be proportionate to the amount of tissue injury
2 types of pain:
-Nociceptive pain: in response to tissue damage. Usually, when damaged tissue heals, the pain resides.
-Neuroceptive pain: frequently chronic and less responsive to treatment.
-Poorly controlled acute pain can expose/predispose patients to debilitating chronic pain syndromes.
Headaches w/EDS of all Sorts:
-Low pressure (weather)
-Myofascial pain headaches (muscle spasmsa)
-Myofascial trigger points
-Sphincter of ODI dysfunction
How to Reduce Pain:
-Employ Myofascial Trigger Point Release
-Injection of lidocain
-Dry Needling (medical)
-Reduce muscle spasm via Physical Therapy (PT) techniques to reduce spasms
-This type of PT is Passive Therapy
-Can also try ActiPatch
-Physical therapy to tone and strengthen
-This type of PT is Active Therapy
-Warm water therapy is most helpful
-Magnesium is used to reduce muscle spasms
-The body depletes magnesium to keep heart rate stable
-Too much oral magnesium can disturb GI
-Well absorbed through skin
-Can try Epsom salts (add 2 cups to warm bath or foot bath)
-Pharmacological Therapy, Drugs, Including muscle relaxants
-Vitamin D – very important
-Sleep (drug and non-drug)
-WHO (World Health Organization) Therapy:
-Adjuvants – Integrative
-Try Diclofenac lotion
-Drugs like Tramadol/Ultram
-20-30 minutes daily
-Integrative medical approaches
-Mindfulness-based mind and body meditation
-Analgesia triggers same response as Opiod involvement
-Other new approaches
-Aromatherapy for headaches
-Inhalation or topical
-Disc disease does occur early in EDSers
-Disectomy may help pain
-Fusion to stabilize spine
-Craniocervial Settling/Instability Surgery
-**Beware of post-surgical pain management
-“Pain is a more terrible lord of mankind than death itself.” –Albert Schweitzer
-EDS predisposes to certain kinds of pain, but DOES NOT cause pain itself.
Dani and Comedian and EDSer Dustin Wood
Myofascial Pain and Dysfunction
Lecture by Dr. Jay Shah
Dr. Shah is a former chronic pain patient himself.
-Works at the NIH Clinical Research Center in Bethesda, MD
-Most chronic pain is not neuropathical, it’s musculoskeletal.
-Nociception (the firing of nerves [electro-mechanical event]) vs. Pain (subjective)
-Acute pain = kid skins knee
-Physiological pain = Eudynia= “ouch pain” = good pain
-Pain remits as tissue heals
-Chronic pain = clinical maldynia = a disease in and of itself
-Pain is not serving any useful purpose anymore
-The tissues have all healed
-Hallmark of sensitization
-Lowering of thresholds
-Tissue texture changes
-Widening of receptive pain field
Living with EDS
Lecture by Linda Neumann-Potash
Tips for living with EDS:
-Keep positive self-image
-Make sure to exercise
-Don’t use distance as an excuse – you can have a partner far away to be accountable to, like an exercise partner.
-Ask for help if you need it; utilize your networks.
-Help others by being a good friend, listening/talking with them, etc.
-Make sure to tell friends/family/community what’s going on, how to help you, etc.
-Prevent injury. Ex: Use of a wheelchair might not only be for after an injury, but used to prevent injury.
-Work around your nutritional needs; be sure to try new things.
-Medications aren’t the primary things that are going to help you – the most important is your head.
Chronic Pain and Sensitization
Lecture by Dr. Shah
Pain is essential to differentiate good stimuli from bad.
Chronic pain = non-painful sensations recognized as painful.
Chronic pain is neuromusculoskeletal:
-Area of skin supplied with afferent nerve fibers by a single posterior spinal root.
-Myotomes —patients have pain in these, too, not just in dermatomes
-A group of muscles innervated from a single spinal segment.
-Sclerotomes —patients have pain in these, too, not just in dermatomes
-One of the bony, cartilaginous, or membranous partitions which separate the myotomes.
-A great treatment option is the Acumed TENS US Unit
for electrical stimulation (not the same as a standard TENS unit).
-Pain management doctor – best bet is to find osteopathic physicians that do pain management.
-Look for osteopath that is also a physiatrist.
Curing Chronic Pain with Prolotherapy **Controversial in EDS treatment**
Lecture by Dr. Scott R. Greenberg
Chronic pain is the #1 reason for disability in the U.S.
“A joint is only as strong as its weakest ligament.” –George S. Hackett, M.D.
Hipocrates – thought to be the 1st person/doctor to use prolotherapy (created by scarring tissue via hot pokers).
-A series of injections that stimulate the immune system to cause the PROLIFERATION of new ligament, tendon, and joint tissue.
-Importance of Tendons and Ligaments:
-Provide joint strength
-Provide joint flexibility
-Provide basis of range of motion
-Relay info to the body about a joint’s position
-Send signals to the brain regarding joint damage in the form of pain
-Refer pain in a similar fashion as a nerve
-Ligaments and tendons will usually not heal on their own when they are more than 6 weeks old.
-Prolotherapy is not usually covered by medical insurance.
-Prolotherapy is a long-term cure.
*according to this doctor*
-Prolotherapy – joints heal/regenerate better than the joints one is born with.
PRP (Platelet Rich Plasma):
-Different than prolotherapy
-Only used on worst joints because it is expensive
-Concentration of platelets, growth factor and plasma made from your own blood.
-Works faster than Prolotherapy but causes more pain and inflammation, soreness, and is pricey.
-Can find some doctors that don’t do these under ultrasound, so less radiation exposure.
-Can use both Prolo and PRP:
-Usually can inject PRP in joint and Prolo around joint.
-Wide range of treatment times:
-Some people require just a few sessions, other require 1+ years of treatment.
Unique Perspectives in EDS
Presentation by Sara E. Strecker, M.S.
Great research website to check out:
Click on the “free full text” link, don’t pay for anything
Go to the article you want to read; click on one of the two links on the right-side of the page to pull it up.
“Don’t let the disorder define what I can do.”
-Standing up = not enough blood to the brain = body goes into SHOCK.
-Coming out of shock = adrenaline rush.
-Heart rate goes up. Anxiety.
-Notes about blood pressure readings:
-The difference between the systolic pressure (top number) and the diastolic pressure (bottom number) should be around 40.
< 20 = BAD!
-Trick: Weekly infusions of saline trick the body into thinking it has more blood in it. This can be very helpful! Go to an endocrinologist to do this.
Management of EDS: From Joints to GI and More:
Lecture by Dr. Howard Levy
How the EDS body works:
Laxity –> Frequent Minor Subluxations Reflective Muscle Spasm
Reflective Muscle Spasm –> Osteoarthritis
// \\ //
Tone and Strength are NOT the same thing:
Strength = NOT GOOD for EDS = voluntary source of power
Can sublux joints
Tone = Important and GOOD = how tight muscles are at rest, without thinking about it.
Can support joints
Resistance is USELESS:
-Use CAUTION with:
*Be very careful how much resistance
-PATIENCE is key, it takes time to show results. Don’t overdue it; yes it is frustrating.
-Low or non-resistance exercise
-Walking, Eliptical, Swimming
-Bicycling, Water exercise
-Building repetitions, duration, frequency
-Start slow, go slow
-Long horizon – months to stop getting worse, years to start getting better.
Treating Joint Instability:
-External bracing when needed
-Temporary thing to use if joint is too unstable to use
-Use while toning, if need be
-If can’t do toning, use a brace
-Joint stability surgery ???
-Increased rate of immediate and short term failure
-Surgery is a way of buying a few months/years to temporarily stable a joint, in order to then tone the joint to actually make it better.
-He doesn’t like. He says he is biased and believes scar tissue is still lax, doesn’t become non-lax, but he doesn’t use prolotherapy and doesn’t know for sure if it works/doesn’t work.
-Feels connective tissue defect may limit stability of scar tissue.
Pain (From spasm)
-Not a cure, but will provide temporary help
-Usually just a few hours of relief
-Use relief time to tone
-Special mattress or pillow
-Stay in a neutral position
-Water, air or foam mattress
-Muscle relaxing medication
-“It’s my destiny to be the king of pain.” –The Police, 1983 (Joke!)
-Multiple causes of pain:
-DJD (Degenerative Joint Disease, aka Osteoarthritis)
-MBSR (Mindfulness-Based Stress Reduction) or other psychological approaches
-Nerve Root Blocks
-Limited, can’t repeat indefinitely
-Block signal where pain originates
-“State of mind changes your experience of pain.”
-Joint or Bursa pain – steroid injections
-Limited, can’t repeat indefinitely
-EDS is NOT an auto-immune disease.
-Analgesics & Anti-inflammatories
-Acetaminophen, NSAIDS, Tramadol, Pain killer receptors
-EDS is NOT an inflammatory disease.
-Inflammation is secondary to EDS, if we damage a joint.
-Neuropathic pain control
-It will take a COCKTAIL of multiple meds to treat each person.
-Scheduled, preventative meds are often more effective than ‘as-needed’ meds.
-Goal with pain management is to limit –but not eliminate—pain.
-See pain management specialists.
-It is not realistic to get rid of pain, but to manage it so you can live with it.
-GERD and Gastritis
-Acid irritation of stomach and esophagus.
-Acidic foods and/or NSAIDS may be factors.
-Acid neutralizers (Tums, etc.) may help.
-H2 blockers (Zantac, etc.) may help.
-Proton Pump Inhibitors (Prilosec, Prevacid, etc.)
-Safe to take ONE of EACH category in same day
-May be triggered by acid and/or NSAIDS
-Calcium channel blockers – Rx
-Sublingual Nitroglycerin (see specialist for this)
-Delayed stomach emptying
-Worse with opiods
-Can use Rx Metoclopamide/Reglan/Erythromycin (antiobiotic)
-No idea what causes IBS
-Possibly caused by certain triggers, including stress
-Pepto Bismol, Immodium
-Keep in mind constipation can cause overflow diarrhea à if taking something to relieve constipation, once harder stools pass, the stool that follows can be diarrhea
-Smooth muscle relaxers (for the gut muscles) (dicyclomine, Bentyl, hyoscyamine)
-Management of stress/anxiety
Dietary factors for GI:
-Fiber – important, make sure to take with plenty of water
-Dairy, sweets, fatty foods – worsen IBS, may worsen GERD
-Spicy or acidic foods – may worsen GERD/Gastritis
-AVOID things that worsen symptoms
-Aortic Root Dilation
-Up to 1/3 EDS patients develop (not including Vascular Type)
-May not need to repeat if normal
-Any age – annually if dilated or enlarging
-Treatment if enlarging:
NMH (Neurally Mediated Hypotension) & POTS
-Tilt-table test to confirm
-Don’t really know WHY
-Routine exercise – vascular toning
-Salt & Fluids (BOTH and LOTS)
-Beta Blockers (slow heart rate), florinef, midodrine
-Tends to improve with age (less severe around 40s?)
-Once improved, may be hard, but necessary to then give up salt to keep heart healthy
Having EDS doesn’t protect from everything else – can still get all other diseases/illnesses, like heart disease, cancer, etc.)
-Usually clinically insignificant
-Usually responds to meds
Skin & Soft Tissue Fragility
-Avoid elective surgery – especially with inflammation
-Don’t pull tighter
-Consider liquid bandages
-Difficult to treat
-Rest, ice, pain meds
-Surgery as last resort
-Calcium with vitamin D – TWICE DAILY
-Check 25-Hydroxy Vitamin D Level – keep below 40
-Do weight-bearing exercise (NOT weights)
-Walking, elliptical, etc.
-Get DEXA no later than menopause
-Repeat every 2 years
-Depression, anxiety, low self-esteem
-You ARE NOT mentally ill
-You have chronic pain
-Living in bed takes toll
-Loss of freedom
-Loss of preferred lifestyle
New friends: Emily, Christa, Dani, Alicia
Surgical and Interventional Practices in EDS:
Lecture by Dr. James Black
Refrain from using stent grafts
-Tissues are too fragile
-High rate of re-intervention
-Provigil (expensive without insurance)
-Takes longer to kick in
Take lots of vitamin C
-Though your body won’t absorb excessive amounts (greater than 250-500mg)
-Possibly may provide some lasting effects
-Requires lots of treatments at first, then maintenance treatments
-Lots of people find very helpful
-Helps for constipation, can take 3x/day, one time each meal
-Can take as much as you can stand, until causes diarrhea
-Can take up to/more than 1 year to get magnesium levels in body normalized
-Keep feet UP!
-If you are run down, symptoms are worsened! Be careful!
Clinical Autonomic and Sleep Disorders in the Joint Hypermobility Syndromes:
Lecture by Dr. Alan Pocinki
Autonomic Nervous System (ANS)
-Regulates all body processes
-ANS Dysfunction is very common in EDS
-Over-response to body stressors
Basics of ANS
-Regulates everything that happens automatically, including sleep
-Functions in ‘Fight or flight’ (the biological response of animals to acute stress)
-Functions in ‘Rest & Digest’ (Parasympathetic Nervous System)
Circulatory problems with ANS Dysfunction:
-“Tip of the iceberg’
Chronic Fatigue Syndrome (CFS), Hypermobility, and Orthostatic Intolerance (OI)
-Often times occur together
Diagnostic criteria for CFS:
-Concept of adrenaline reserve:
-The “over-response” phenomenon (lots of adrenaline causes energy, flight or fight, invigorating state of mind and body, panic) – adrenaline increases when heart rate goes up, etc.
-The “over-correction” phenomenon – when heart rate goes down, etc. and blood pressure become more regular, the adrenaline becomes depleted, which causes low/no-energy, fogginess, exhaustion [CFS, etc.])
-Concept: The more depleted the adrenaline, the more exaggerated the response
-Tilt table test, QSART (Quantitative Sudomotor Autonomic Reflex Testing, Sweat test, etc.
-ANSAR – painless , non-invasive diagnostic procedure that determines how well a patient’s autonomic nervous system is functioning)
ANS Over-response Symptoms:
-Orthostatic Intolerance (OI)
-Address underlying problem:
-Can include dehydration, low blood sugar, etc.
-Prefers Benzos over Ambien, etc.
-Likes Propanerol at bedtime; it gets into brain
-Pick drug that will kick in quick enough but be worn off by morning
-Other drugs that are used at Xanax, Adavan, Resteril, Valium, etc.
Chronic Pain and Coping: Reducing Depression, Anxiety, and Pain through MBSR:
Lecture by Trish Magyari
Active coping leads to increased adaptation.
Increased coping leads to decreased disability.
-Talking about it
Strategies that focus on internal cognitive control lead to increased functioning and adaptation.
Positive pain coping leads to lower depression and anxiety.
Self-efficacy = How much we feel inside ourselves that we can find ways to do what needs to happen.
Mindfulness-Based Therapies (Mind-Body Techniques):
CBT (Cognitive Behavior Therapy)
DBT (Dialectical Behavioral Therapy)
MBCT (Mindfulness-Based Cognitive Therapy)
MBSR (Mindfulness-Based Stress Reduction)
MBSR (Mindfulness-Based Stress Reduction):
-Hot topic in Western Psychology
-“Changing our thoughts to change our behaviors.”
-Effective for increasing emotional intelligence
-Aspects of Mindfulness:
-“What else is happening at the present moment that we can focus on?”
-Recognize “good” and “bad” present feelings
-Safe and present in our own mind
-No judgmental thoughts
-“Can I be with it in a friendly way?”
-Cultivate self-compassion, self-forgiveness, self-acceptance
-Mechanisms of Action
-Elicit “relaxation” response
-Decrease stress hormone levels
-Calm “fight or flight” reaction
-Cultivate quiet, alert state (homeostasis) in which healing and growth can occur
-Developed by Dr. Jon Kabat-Zinn in the 1970s
-Widely used now world-wide in hospitals, schools and communities
-Description of course:
-Practice formal and informal mindfulness
-8 weeks, 2.5-3 hour classes
-Daily practice of 20-30 minutes
-Mindful Yoga – 2 routines
-Loving Kindness Meditation
“Increased self-efficacy leads to Behavioral Activation.”
Book recommendation: The Mindful Way through Depression
New book coming out in September, 2010 –
Trigger Point Needling – Friend recommends with Lidocaine over without.
Senna tea for constipation – Friend likes Republic of Tea
Friend uses skate shoes for support
– DC Mateca Mid-Top – cheap on eBay, and
At the conference, they sold Fit Flops for use as ankle supporting sandals (one of the vendors); friend likes them also and has several pairs
– cooler with pad attachments, good for icing injuries
Dr. Brad [Tinkle] recommended the following to a friend:
Recommends a daily preventative combo of Tramadol (Ultram), exercise, daily NSAIDS. Muscle relaxers if needed. If need narcotic, take same amount everyday, every 4 hours plus more if needed for breakthrough pain.