2017 - Dr. Adam Farmer - Gastrointestinal Symptoms in EDS

Thanks for presentation. I haven t been officially diagnosed with hEDS so far, as there is only one clinic that does researchvon EDS. I was told my GI symptoms were psychological. Until they got much worse. Even then, tests were negative, so I was not believed by leading gastroenterologist in my hometown. I finally got subtotal conectomy for slow transit constipation, which made things better. Last year I was in Hospital because of EDS and seremverest headaches and very low sodium and an inflammatory rheumatological flare. Even then I felt just guilty and hypochondriac to use a wheelchair and was not believed my synptoms by the doc. I went to medschool and am a family doc now and still get discriminated again and again for my not visible condition.

As an EDS patient with multiple comorbidities AND someone who has multiple types of GI issues....I am so so so so so INCREDIBLY tired of doctors insisting that everything is psychological and can be helped by therapy and antidepressants. You think maybe - just maybe - my GI issues just could be possibly caused by the defective collagen and connective tissues that the GI tract is made up of??? And/or maybe affected the inappropriate activation of mast cells that literally line the GI tract? How is therapy (which I’ve done A LOT of) supposed to help that? Or antidepressants? Also....pain patients deserve actual pain relief. Jfc

Excellent presentation. Very humble, but very authoritative.

It drives me mad when they automatically state ‘opioids’ being an issue. The problem with some of us is that we have multiple conditions not just a moderate/severe case of EDS. Some of us keep needing many surgeries (40 in 10 yrs) and cancer treatments so we need low dose opioids because we’re anaphylactic to NSAIDS, pregabalin/gabapentin, pain patches (the plaster & glue that’s on them) so that rules out lots of meds I could possibly have because of (MCAS) and g6pd deficiency. We need production of new innovative pain medications/legalisation of Cannabis derived medicines also. I had my diagnosis of Bowel motility issues, bladder motility issues, pancreatic motility issues and stomach motility issues (Gastroparesis) while not on any medications. Most testing of organ function in my experience is always done without being on any medications as these can skew the results.

Thank you so much for discovering this link! Doctors thought I was just a weird person or even crazy!

For me, IBS is directly caused from my HEDS, as is everything I experience. Problems with urination also, having the urge to go suddenly at least every 45 mins to 75 mins. All of my joints hurt constantly, as well as my ligaments. Attempting to walk for more than twenty minutes is almost impossible as well as just standing. Also, I cough up a lot of phlegm and have a hard time catching my breath from time to time. Swallowing is also difficult at times, I have liquids go up my nose when I drink quickly every day, my jaw also pops out when I try to eat something hard.

I don't think this doctor has ever suffered from chronic pain! Otherwise he wouldn't suggest that opioids don't make your life better, for chronic pain patients! This made my blood pressure shot sky high!

Thanku for all these wonderful and authoritative talks

Mestinon fixed my digestive motility issues and dysautonomia/POTS associated with my hypermobile type Ehlers Danlos syndrome. It's also reduced some of my exercise intolerance and fatigue. It works by stimulating the vagus nerve and parasympathetic nervous system, and improves muscle tone. Although Mestinon was developed 75 years ago to treat other health issues, it has emerged as a popular medication for treating EDS since it can address multiple symptoms with a single medication. I also take a small nightly dose of Clonidine to reduce some of my pain, migraines, insomnia, anxiety-like symptoms, and dysautonomia. It works by signalling the body to not release so much norepinephrine and adrenaline into circulation, thereby calming the body's "fight or flight" panic and anxiety response. Since this is technically a mild blood pressure medication, it doesn't have the side effects or risks of addiction or dependence that sleep/anxiety medications have. Clonidine's sister drug, Guanfacine, acts in a similar manner while being less sedating.

wonderful talk thank you, you have helped me no end and have probably helped my general practitioner as now I can explain much of what is presenting in me. Thank you.

All of these drugs to treat pain cause weight gain for many people, which puts more pressure on our joints and other connective tissue, compounding hyper mobility problems. There has to be another way!

I developed allergies to all the drugs you named . They gave me chronic, crushing headaches, stomach cramps and then diarrheoa until I am incontinent . Opioids are the only drugs that I do not react too for my pain. To help with my Collagenous Colitis I have Botox injected into right sacro- iliac area.

"Half the people" who came to their office "had Joint Hypermobility!" Three people in my family have Acid Reflux. 4 have Hypermobility & maybe one older immediate family member in the home had it in the past. Suspected hEDS or EDS for 4-5 of us. I am researching this for my family. It seems my suspicions are correct, at minimum on the right track. There definitely seems to be a connection between Acid Reflux, & Hypermobility, (or hEDS, or EDS). Maybe the connection is with all three conditions?

Incredible

Ty for this I've been through 10 GIs and just passed on by 2 more cause I'm a "complicated case"! I've been left to suffer with Idopathic Chronic Pancreatitis flares,Non diabetic Gastroparesis MCAS, and POTS. No one will help me.

It's too bad that he's not mentioned Buprenorphine, a partial opioid agonist /antagonist with doesn't make one high and doesn't depress the respiratory system. I've taken it for 5 years now and it's so much better than other medications!

I was CRIPPLED LONG LONG BEFORE I was prescribed opiates! 😠

I don’t know if I have anything but I have always been very flexible lots of pain when growing up I was told often it was growing pains. I never grew much more I’m 5’ 1” the same height as I was preteen. I also had tummy trouble I have been told it irritable bowel disorder. This sounds so familiar. I am now well over 50 arthritic. A bit stiffer and with a big tummy but I can put my hands on the floor, without bending my knees.

Postprandial fullness!!!!! “Your Eyes Are Bigger Than Your Belly” 😂❤😂 the amount Is hear this, because when we’re hungry we’re very hungry, and we start eating and hit a wall.

Is there a problem with tingling/numb feet in this