2017 - Dr. Adam Farmer - Gastrointestinal Symptoms in EDS

From the 2017 EDS Global Learning Conference (Las Vegas), Dr. Adam Farmer's plenary session (and Q&A) on September 9, 2017, "Gastrointestinal Symptoms in EDS". His slides are available at www.ehlers-danlos.com/2017-ed.... A transcript is being prepared, and will be linked there and here.

[@annettesuterswiss]

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.

[@melissafarrugia9531]

Well done, Your determination is admirable. Very soon hEDS gene association will be addressed publicly and for the majority of the EDS community being hEDS sufferers this I do pray will help people immensely. I understand I’ve gone through the gaslighting too. People like You make a great difference for the community and may you continue your good work ❤

[@miltonwaddams2564]

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

[@jeremybowen2517]

Excellent presentation. Very humble, but very authoritative.

[@zeaw119]

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

[@murielbilly4296]

Exactly. And then the most unbearable thing to say : "you are too nervous, you need to be calmer". I heard it thousand times. I'd like to answer sarcastic : Oh yes, I'm in pain for 53 years, gastro-intestinales big issues etc because of hEDS, and I never think and try to be more zen, how stupid I am. 🤯

[@deedee99ist]

Just been thinking exactly the same thing. Why Is if you have EDS they want to refer you to a Psychiatrist. Surely tools from a physiotherapist is more beneficial than a drug that can cause secondary health issues .

[@symbolistartist]

Yeah I don’t know how antidepressants would really help anyone, they are terrible drugs that can exacerbate diarrhoea. The older you get, the more sensitive you become, too. He didn’t even mention Buscopan which is slightly more useful.

[@saturationstation1446]

pharma companies literally give yearly bonuses to doctors for prescribing certain amounts of anti depressants. its really the only way the population hasnt done a gigantic mass suicide because most people are literally worked to death for no compensation and no one with a functional brain would have the capacity to actually do that without being drugged into a stupor

[@rafael1207]

Sorry for my english, first of all. I suffer the same thing and I got always tired of the same things doctors always say to me. As time goes by, I eat less kinds of food, feel weaker and got brain fog. It really sucks, but I keep pursuing ways of improve my condition and not give up.

[@MOJORAPSCALLION]

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.

[@CoDeMiTri]

Agreed!! Personally cannabis has been the only thing that truly relieves me of chronic pain

[@realness_rarity]

I had gastroparesis and severe constipation before I even was on any meds, I am now on naloxegol to stop the effects on my gastro and bowel system due to the fact I have severe psoriatic arthritis, small fibre neuropathy, degenerative disc disease in my spine, scoliosis and damage from a car accident so need pain relief I am on prucalopride and domperidone which don’t do much. I am under prof aziz he’s lovely

[@clarewillison9379]

Well said 😫🤬✊🏼

[@patriciajump9511]

I think he probably doesn't mean you. I think he means people with just IBS, not anything else, taking opioids for the IBS. I think, anyway, because he says avoid "where posdible."

[@sethtaylorm925]

Opioids work best for me, eds, mcas, and pots, had back surgery and others, but this war on opioids just making life hell.

[@elizabethvandeventer5487]

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.

[@aryanbryson933]

instaBlaster...

[@the_real_littlepinkhousefly]

Yep yep yep

[@terrimccann3006]

May I ask you a question?

[@elizabethvandeventer5487]

@@terrimccann3006 yes you may, it might take me a few days to answer.

[@terrimccann3006]

@@elizabethvandeventer5487 Do you eat grains like corn, wheat, sugar on a regular basis? Are you taking any drugs...like antibiotics, etc.

[@malinichandra6953]

Thanku for all these wonderful and authoritative talks

[@jobell7356]

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.

[@MK-mj9gx]

"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?

[@aftonhalters]

likewise (all things mentioned) with my family. It sure does vary from one person to another though

[@melissafarrugia9531]

GERD too it’s a bit more severe than acid reflux but it feels related…

[@Dulcimerist]

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.

[@conniegarvie]

I took Mestinon for 4 years and stopped taking it earlier this year because it actually was making my heart intolerance MUCH, MUCH worse. My continuous sweating and drenching the bedsheets stopped instantly after stopping the Mestinon! I feel much better now.

[@Dulcimerist]

@@conniegarvie That's an odd reaction to Mestinon, but everyone responds differently to medication. Were you on it for myasthenia gravis?

[@julieporter1293]

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.

[@ZeldaZelda-RichesToRags]

Me as well...I can't take ANYTHING except opioids but my GP doc said he wants me OFF of them, thinks I'm taking too much. OMG...3 of the 10 mg per day....HE's nuts...I just had failed spinal surgery that tripled my back pain. MRI proved my spinal fusion went bad....it was after the surgery that I was DX with EDS and Mast Cell...every day is pain...unrelenting pain. I cry all time. I was learning to play piano, had done very well for my being an old lady...my hubs got me a 6 ft grand piano and I found a teacher willing to teach old dog new tricks. I took off like race horse, 3 yrs ago. Practiced several hours per day...often 4 hours...I was able to play for church. I've wanted to learn to play piano my entire life...was told I was too stupid...my folks were wrong! Everyone tells me I'm gifted, talented, but now with my anemia, fatigue and back pain...sitting at the piano is impossible. Here's link to my playing...was just after 3 months. kzbin.info/www/bejne/f6ekkmhpq8eYqZo whenever I;m playing music, i can play thru the pain, it almost disappears.

[@kittyarcade2296]

I just literally made moaning noises to hear about botox for the si joint because I have been wanting this. I, too, react to many medications and respond well to botox in my neck ligaments. What specialist helps you with the si joint? Wishing you well!

[@julieporter1293]

I am in Brisbane and see a Dr Bruce Jones for my Botox injections . All the pain management doctors blatantly refused botox and I was laughed at when knowing medications were not doing it for me. My muscles had been in spasm for 7 months after I was T-boned in a car accident , nothing was stopping the spasm ,until I thought why not Botox ! It was happy accident that the Botox controlled my Collagenous Colitis ,I was human again . I have it every 3 to 4 months ,the powder diluted in only 2 mls of water , it is at its most concentrated. I hope this is help for you . We truly are ZEBRA'S!

[@symbolistartist]

Yes it could be serotonin overload for example. Those drugs make me very sick (vomiting, diarrhoea, dizziness etc etc).

[@amandabuhlinger4504]

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.

[@melissafarrugia9531]

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

[@user-xp8kd7vw3i]

Incredible

[@AliceDaley1995]

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

[@MOJORAPSCALLION]

Thank-you! Me too! X

[@chaverim5189]

Thank you for this very interesting podcast, I am very grateful for this information. May I ask a question. I am suffering from -chronic idiopathic pancreatitis, -chronic coronary artery spasms, -the Arteria-mesenterica-superior-Syndrome, -gastroparesis -the Ehlers Danlos Syndrome and a pathologic too long colon. My doctor is thinking about a correlation between all those illnesses I am suffering from. Does anyone know about a correlation between all those different illnesses? If yes, please get in contact with me, I would be very grateful for further information on that. Thank you very much . All the best, Alice B.

[@mandyrobbins2160]

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!

[@conniegarvie]

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!

[@DAYBROK3]

Is there a problem with tingling/numb feet in this

[@emilyalternative9519]

Yes. This was one oh my first complaints in my early 30s. I have no issues with diabetes. Just (h)EDS.

[@ZeldaZelda-RichesToRags]

OH YES...and I often get upset that my cats or dog is shaking the bed, then I realize its my own body....feels like I'm hooked up to an old motor....buzzing all time.

[@kerriskaraoke]

@@ZeldaZelda-RichesToRags thank you. I'm not crazy afterall. Lol

[@lelanicampher4813]

Magnesium supplement helps me with this symptom.

[@Musika1321]

I get that too.

[@conniegarvie]

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!

[@erinmarie99]

I’m desperate for this information! I’ve been trying to get to the bottom of what’s “wrong with me” for years! I have mercury poisoning but I think I may have eds underlying and causing bad GI issues.

[@deedee99ist]

I would love to hear a presentation from a parasitologist on how parasites may induce changes in the DNA methylation profile of mature immune cells that can alter the accessibility of transcription factors to genes (Morandini et al. Why do gastroenterologists never talk about this issue . ????

[@sarahleclair855]

I know that EDS is most likely one of my major issues yet I can’t find a dr in my area, any suggestions. Oh I live in Maine USA

[@DAYBROK3]

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.

[@melissafarrugia9531]

Sounds like you have enough to warrant an assessment. I wonder if you had one done in the past six years since the comments here? The hEDS gene is apparently associated with hormone and adrenal functions, and is undergoing clinical identification currently. I also found research on the growth factor association between connective tissue syndromes in Ehlers Danlos material l, as my cousin was put on growth hormones (steroids) during adolescence because he was obviously not thriving, but I think the same happened to me, although it’s more acceptable to be a small/petite woman than a small/petite male so I do believe it gets missed or overlooked in women more than men, when growth is stunted. I’d be really interested to hear if you eventually had a diagnosis.

[@DAYBROK3]

@@melissafarrugia9531 growing up in northern bc canada in a town without a hospital drs did not have many options, besides the 1960/70s these things were not known.

[@AliceDaley1995]

Also, all the way through a discussion about EDS and GI symptoms, he hasn't mentioned Gastroparesis!!

[@ctfromnh]

Check out 4:50 to 4:58. Mentions gastroparesis.

[@malinichandra6953]

Yes he does mention

[@fleurrebelle7043]

yes he does...few times

[@MOJORAPSCALLION]

There’s not that much on Gastroparesis which is a common co-morbidity for many of us.

[@connie2372]

My daughter has had diagnosed Eds since the age of 10 the gastrointestinal problems began in her teen years she would go sometimes 2 weeks without a bowel movement bloating and then with like dumping syndrome of severe. Diarrhea and lots of strings of mucus and incredible severe pain when this. Happens

[@AliceDaley1995]

Why does everyone compare everything to cancer!!!

[@Sam34292]

My GP sorted my upper abdo pain quickly with Somac. Pain gone.

[@tknzdworldfirstidentylinke6404]

What kind of doctor can diagnose me for EDS? I think I have it.

[@mandarkumthekar8565]

Rheumatologist

[@connie2372]

I noticed you did not mention the terrible death rate from ruptured Bowell is of great concern to me with this. Condition. This is new to our family G nome I'm the oldest of 9 children. My husband is the oldest of 6 he was exposed to Agent orange in Vietnam. And genetically favors him. This the gene is now mutated and her daughter who is 16 was diagnosed with Eds last year

[@muhammadabdurrahim752]

Why is the audio quality so bad

[@PlasmaJunkie]

It seems like all the videos from this conference have a bad hissing sound. They probably could have fixed it in post but didn't have the experience to do it.

[@ZeldaZelda-RichesToRags]

ITS just FINE...its your ears! LoL...seriously, I think they've made mistake with upload on audo just to piss us off.

[@grizeldatulian4526]

The gut brain axis is a hypothesis, and none of the treatments work. Should one not then change the hypothesis because obviously treatments based on this hypothesis do not work. I do believe a lot more research is needed for functional diagnosis!!! This diagnosis also leads to things like MACS and other issues being missed. I’m my opinion hypersensitivity is a symptom of something maybe not so “functional”. If you look at Fibromyalgia many people have no success on these drugs. Again because it’s another umbrella diagnosis not understood. Why don’t doctors just admit they don’t know enough and they are just guessing!!!!!

[@deedee99ist]

WRONG!!! we have lots of GMO in the U.K.

[@lavenderwindsor632]

I really think this is what is wrong with me

[@melissafarrugia9531]

Did you find out?

[@gabbiebarnard7580]

Could this all be related to increase pollutants in the drinking water. PFOA's and PFOS from the water course and fallout of Chernobyl and Fukushima? And an increase in mothers using baby formula high in these chemicals?

[@AliceDaley1995]

I was with him until he started talking about the "opioid epidemic" Then I shouted "BULLSHIT" at my phone, and decided I am NEVER seeing this doctor EVER!

[@christinagiannaros9817]

I wish I had spoken to him before I went on patches, long term use has created horrific and crippling gi issues, my dr indicated when I was on them that it was common, not one dr warned me that even after going off them my severe gi issues could continue and perhaps be permanent, it can take 3-6mths for the gut issues to resolve, I am waiting to see if it ever does. Totally devastating and life changing. I should never have been prescribed them except for the short term with my gi history.

[@catmomlavender3036]

Especially when he used the US reports , because the CDC had got caught using *FALSE INFORMATION* but that was just pushed under the rug and was never really spoken of much. Doctors now can no longer even claim to be in support of opioid use for fear if being scrutinized or to be perceived as a pusher .Sadly they speak of cancer patients suffering and the need to help them out of pain because they may not make it , but with debilitating pain for others its just not as important for relief from pain ... unless you may die other than that .. just suffer 😖

[@marinmarin9911]

What a profound logic. Hope you have grandkids, someday.

[@symbolistartist]

It shocks me that this doctor recommends antidepressant for GI pain. They don’t work for IBS! And what is more, 90% of serotonin is found in the gut and people who already have diarrhoea are very likely to respond to more serotonin by having more diarrhoea. Personally, these medicines make me extremely sick. And while opiates isn’t a great solution, it should also be quite easy to determine whether people develop increased GI pain from them or not. They are not made equal and some also increase serotonin by a lot. So constipation isn’t always the issue. However, there are co-morbidities and restless legs syndrome is one that might require opiates. Doctors need to be better informed and take a more nuanced view. We are not all the same. Oh and where’s Buscopan in all of this? At least that was of some use for a period of my life.

[@tknzdworldfirstidentylinke6404]

My mom definitely had it but not diagnosed and they put her on opioids.

[@maryamp1867]

Opioids are bad for us because of our gastrointestinal problems. I take methalfenidat “Concerta” 54mg and my pain is gone, it comes little only in the morning because my medication is out from the system. I wish your mom the best don’t give up

[@michelebenedetti2674]

Yes please please contact me my son 26 year old who was always healthy but had signs of EGS almost died in October from a bowel perforation please contact me I really would like to find out if you can give me more information

[@cosmicalchemist8219]

I liked everything you said except for the cannabis hyperkinesis syndrome thing. That’s totally false.

[@grizeldatulian4526]

And to add - if most EDS patients have pain in joints and various parts of body due to over strain and stress is it not possible that you do not know how bowel issues eg constipation causes undetectable sprains and strains in the bowel that can’t be understood!!! Do more research and stop putting forth hypotheses making patients feel more gaslit and only pushing more anti depressants. There is not enough focus on EDs specifically and the possible impacts on gut. And mechanically what conditions are linked. Many people with EDs or functional diagnosis can have missed diagnosis like compression syndromes etc. DO BETTER

[@deedee99ist]

Just wondering because we are moving into a new technological era, if certain radiation and frequencies can cause problems with collagen and mast cell activation. Has anyone read the invisible rainbow. A history of electricity and life by Arthur firstenberg. We now have lots of WiFi smog and 5G . Just curious to see if any connection . 'Few individuals today are able to grasp the entirety of a scientific subject and present it in a highly engaging manner, in plain English, without losing any of the details. In The Invisible Rainbow, Firstenberg has done just that with one of the most pressing but neglected problems of our technological age. This book, which as a medical doctor I found hard to put down, explores the relationship between electricity and life from beginning to end: from the early eighteenth century to today, and from the point of view of the physician, the physicist, and the average person in the street. Firstenberg makes a compelling case that the major diseases of civilization--heart disease, diabetes, and cancer--are in large part related to the pollution of our world by electricity.' --Bradley Johnson, MD, Amen Clinic, San Francisco 'Firstenberg is a pioneer in the sense that Rachel Carson was a pioneer.'

[@connie2372]

I am a n Rn and have done observation of her and care most of her life at her side she is 42 years old now and weighs. A terrible gaunt looking 84 pounds

[@shannonriley575]

So disappointed. Citing pseudoscience and incredibly patronising.

[@the_real_littlepinkhousefly]

Hmm ... clearly we didn't watch the same video.

[@gabbiebarnard7580]

It was the gut focused hypnotherapy bit, and calling it Cinderellering patients instead of calling it 'gaslighting' like it is!

[@deedee99ist]

Yes I agree …..making out that people with gut issues need antidepressants or psychological help . Wrong!!!!

[@deedee99ist]

I can’t bear to watch this any longer.

[@connie2372]

Same old same old. Money cost and pain med controls. Not appropriate for lifetime no cure conditions. Poor outlook above all. 🤨🤨

[@melissafarrugia9531]

Mixing unsubstantiated claims in with truth, leads to misinformation. This presentation needs scrutiny over this exact issue… The costs are inflated exponentially by the practitioner not recognising facts, ignorance and gaslighting of the patient and not knowing or accessing contributing educational resources for improvement!!! FRUSTRATING

[@kengray1291]

E. Gray here: 15 years use of dr prescribed narcotics with great help of much pain ( I have hEDS & several co-morbidities) and Madt cell activation disorder which causes much havoc with day to day living. After 15+ years of morphine and oxycodone I developed Achalasia II by 3 GI specialists where the lower sphincter in my esophagus where food would pile up & rot and I’d throw up 5-12 times/day including regurgitation and bloody esophagus. With much research I learned long term use of narcotics can cause Achalasia I, II, III, AND IV. I had many mobility tests, Bravo, biopsies, upper GI,s at 3 teaching hospitals. All same results: manometry tests, FUNCTIONAL MRI,S……… I took myself off narcotics and started rx of low dose Naltraxone rx by pain doctor and cure ting on 8mg titrations up and had one injection of 100mg of Botox into lower sphincter which helped for 8-10 weeks. I’m using cymbal to and gabapentin with success. I have POTS, dislocate all joints with several joint replacements, now at age 66 I have developed serious spinal issues in cervical, thoracic, lumbar & sacrum areas. A variety of xD: tumors, stenosis, dura punctures, pituitary tumor, severe arthritis from head to toe; approved for disability at age 50 on first application, sadly preventing me from my career as a hospice social worker! I am being referred to Stanford Hospital,s Pain clinic and to Stanford Hospital’s neurology clinic specifically to see Dr. Ian Carroll re: possibility of a cerebral spinal leak. I have developed extreme laxity in my bladder and fortunately being treated for 20 years by same gastroenterologist who has helped me immensely. Life is difficult w/pain and headaches, falling, and heart difficulties; but seeing a great psychoanalyst has been helping me stay focused on learning techniques to live with the pain; physical therapy and Jon Kabat Zinn’s method of meditation have given me much needed tools to live for today and accept that I must continue to study and teach my physician’s & share research with them ( neurologists, PCP, internists, endocrinologist, rheumatologist, cardiologist, ………. My background in medical social work has helped me learn how to communicate with the medical model here in US. I’ve been actively impacted/sick since age 25 & now know that any family members are affected by same hEDS. Becoming associated with EHLER’s DANLOS SOCIETY & sharing this resource with ALL my treatment providers has really improved my care! Thank you! Long term use of narcotics has been shown to also cause EMJJO- a motility disorder similar to Achalasia.