Iyengar yoga has taught me just because i can, doesn't mean i should. The balance of getting hypermobility under control by awareness awareness.

I'm 53! My whole life. Surgeries. Long long long recovery times for injuries and non-trauma dislocations of shoulders knees, ankles, thumbs. I easily pass all the Beighton Score Tests. They told me I have fibromyalgia. I only looked into Ehlers Danlos because my daughter is currently being evaluated. I sent this video to my GP. He and I are going to discuss this today.

Thank you for your time making this video. This is myself, my two sons, and my two sisters. It’s so incredibly painful and exhausting.

Does anyone feel like body is squashed by weight while sleeping? Feel numb, stiff and lung feel extremely heavy and tight for hours upon Waking. Of course fibromyalgia dx. Life's so hard 😪

Diagnosed at 56. The dr.s called me double jointed when I was a kid. Nobody believed my pain, nobody. Every step I have taken in memory has been painful, and I can work my way up from there all the way to my head. Two broken and dislocated arms and a bout of paraplegia after a fence fell on me, all of this by the age of 4, and still nobody understood. I use auquatherapy and acupuncture at this time. I don't tolerate pharmaceuticals. I use medical cannabis, it helps, but I wonder frequently when I won't be able to walk any more because of the pain. I also have fibromyalgia and osteoarthritis and neuropathy. I am very, very happy you are now studying this.

I was diagnosed heds at 50 by a rheumatologist and then told by the same that he couldn't help me. Apparently, no one can. No one knows what it is and wants to treat each symptom as a stand alone problem. I'm tired of going to physical therapy when it doesn't help. I have GERD, scoliosis, and arthritis with bone spurs all over. My spine from the neck down is a mess. I have joint and muscle pain every day. Closest doctors for eds are in the state capital and booked a year in advance. I turn 54 on Saturday. I doubt I'll ever find a doctor that understands.

I'm 47 and was only just diagnosed with h-EDS. I have scoliosis, have had 4 shoulder dislocations, IBS, low blood pressure and POTS, lots of chronic joint and muscle pain, tons of allergies, brain fog... I was sent to multiple specialists without anyone ever mentioning or thinking of EDS

🤯🤯... so many kneecap dislocations. started at like 14. scoliosis. the pain. stomach issues and vomiting my whole life. flat feet etc etc. nobody has ever taken it seriously. 😭 there's a reason.

The problem is no you have no who has the disorder studying or treating it, consequently there is a lot still being neglected. For example, after time you may no longer be visibly hypermobile as after years, you develop fibrosis and arthritis. You need one of us on that side to really shed light on what is going on through, clinical practice, and to truly connect with others suffering. Awareness and compassion for this condition it greatly lacking but I have hope that changes soon.

We need a million of these docs in california. i have multiple smashed discs from body building for years with EDS and all they want to do is hook me up with a opiate contract and pin everything on my back, or dismiss it altogether... yet ALL my joints and bones hurt and aaaall the muscle i built up on my back is now spasming(pulling on herniated discs with extreme laxity) and can drop me on the floor if i even point at something too fast. multiple 5-6mm osteophitic bulging discs alongside joint laxity is obscene, but it reads as barely touching in my stationary MRIs... 8/9 5/5 6/12 3/3 on the checklists with no other alternatives diagnosis yet... but all my kids have paper thin skin... can still see all the veins on my sons face along with 8/9 on the beighton scale and he is 4 years old and in love with our trampoline... just scares me for his future and the current lack of knowledge on the condition.

Diagnosed finally at 41. Due to me figuring it out and putting the pieces together and then 3 years after finding the right doctors who listen and take me seriously.

If the moderator would have stopped butting in once a minute to interrupt like we're all toddlers, that would have been great. Patients don't need things dumbed down all the time. These are specialists-- let them shine.

my grandpa is 99 and was just dignose with Eds

#jennyB I have had similar issues. I am 64 and have been dealing with chronic pain for decades. I was diagnosed with fibro, lyme disease, babesia, IBS, chronic interstital cystitis and severe joint and spine issues. My daughter was diagnosed with EDS as a teen. She told me it must be part of my issues as her dad is healthy. She was correct and I was diagnosed last year! At 12 I fell a few times on my left knee due to weak ankles. I had surgery at 19 due to a tear in the cartilage and infection in it. I always had neck and shoulder problems. In the 70s a chiropractor had me put my arms up and place my palms on the opposite shoulder (upper back). He pushed my elbows toward each other. They actually crossed past the point where there should have been a pop, then back. He said he never saw anything like it before. My joints and cervical/lumbar spine have many bone spurs, severe arthritis, and herniated discs. I had shoulder surgery for spurs that they thought was a torn rotator cuff. I was told I would need shoulder replacements before I'm 70!! I finally had my knee replaced in 2014.

My physical therapist told me I’m hyper-mobile, I can kinda slide my hips in and out it doesn’t really hurt other than there’s a permeant stunging/sometimes burning around my hips. He also told me I have bulging disks in my lumbar and possible in my neck because my back burns a lot to. He gave me some exercises and he pokes my back and hips to test for pain and hypersensitivity. Sometimes he pokes and it just aches sometimes it stings a ton. The exercises seem to help some but I’m still in pain everyday and he didn’t give me any recommendations for how to work out as a hypermobile person, so I can’t tell which pains are a problem and which pains I should be concerned about. I also have been in pain for a long time and I feel like I can’t tell what’s normal and what isn’t anymore.

Wow I always held my pencil wrong since preschool because my hand would hurt... never would sit still either because of always being uncomfortable. I have all these symptoms besides the hyper mobile joints. I do have a history of rolled ankles, knee instability, hip instability, shoulder instability, and constant back pain since I was a kid. I also have GI issues. I guess my skin is kinda stretchy... but isnt everyone's? Is there levels to this diagnosis? Like could I have symptoms to a lesser degree? I went to a lot of physical therapy but I think it just irritated things more. Ulnar nerves- numbness in my hands. I'm definitely very strong and my PTs don't think I have any obvious muscular weaknesses...yoga. I'm very very good at yoga. Like as a big muscular guy I blow instructors away who dont know me. But this back pain always flares up later and I eventually found it was better if I stopped going. I always was a serious cyclist but have given that up, as well as any activity that requires riding in the car because that makes my back so stiff. It will lock up on the way home many times. I am reduced to sitting on these special cushions now. I cannot sit without them. I get in a bad mood often and have pushed all of my support system away from me. People dont get it when I just dont feel like doing anything or talking to anyone. I have to make up excuses many times and I think it hurts people's feelings. I also often have trouble at my job. Staying motivated is so hard when some days I feel great and bite off a big task and the next day I can hardly walk. It's such a roller coaster.

I think I need to be tested for this! I have almost all symptoms.

Thank you for doing this series.

I find this to be one of the most interesting syndromes out there fascinating and torturous for whoever has his ailment

I'm 84!!!! My whole life. Weak ankles had to be wrapped as toddler so I could walk. Asthma and allergies at 10 and now have COPD. At 15, both knees dislocate playing football. Continue to dislocate thru life even with many surgeries. Develop IBS in 20s. Constant joint pain. Many anxiety and depression issues over the years. Carpal tunnel surgery. Open heart surgery in 70s. I can't believe the connections with connective tissue disease. These symptoms are shared by my children and my sister's children. WoW.

I know I have EDS , but I just found out last year. You would think as I’ve had pain for 30 years and seen multiple doctors and spent thousands of dollars to try and get well, that surly some doctor along the way would have diagnosed me. NO I had to through videos EVERY ONE in my family has some health problem that can be traced to EDS, it’s terrible to be thought of as a drug addict because you need pain pills to get by. Until COVID I was actually self treating myself with Tylenol # 1 from CANADA now I have to BEG the doctors for pain meds.

I am almost 70 & just dx'd. Granddaughters exhibit many symptoms beyond hypermobility.

Thank you so much for making this discussion available freely online.

I have a marfanoid syndrome and a rare mutation for cEDS and other overlapping syndromes, was diagnosed age 55 after i did my own researchs, my son shares the marfanoid syndrome, this all sucks, there are no knowledgable docs for us here in Germany

Thank you for this very informative presentation, very helpful 🙏.

My 2 kids and i were diagnosed with hEDS last yr. I also have ADHD, IBS, GERD, gastritis, hernia, POTS, MCAS, fibromyalgia, mild regurgitation in my mitra valve and tricuspid valve. I have also torn both my ACLS. My son was also just diagnosed with EoE. I am in movement therapy that teaches me to not hyperextend or hyperflex in every movement. My brain activates the wrong muscles on every movement.

Casa Colina In Pomona, CA has a great physical therapist that specializes in patients with EDS. Dr. John Fagan has a office there as well. He specializes is EDS patients. I give them a 10/10 5 star rating 👍🏼

I also have had exercise related hives since I was in my early 30's IBS, CFS, Fibromyalgia diagnosis. Glaucoma.. and my veins are bulging in areas. . I just can not wrap my head around the doctors missing this for so long.

Should elaborate on the muldowney protocol for physical therapy, prolotherapy before cervical fusion. Also Dr. Virtaj Singh in Seattle is working towards opening an eds clinic, years down the road but should be known to all to help him further his goal so we all can benefit

It's painful and is generally NOT treated in my 30+ years of experience in the EDS world. I'm concerned about my spine again. It's hurting in a new spot. Making moving difficult. Has my permanent fracture worsened? How did I even fracture my spine while bedbound for a decade? Don't have EDS? Be grateful. Be grateful. Woke up in pain aged 11, it hasn't stopped since, my healing is awful - surgery will never be safe for me (that's scary)...Did you just see a piece about how a group believe they may have found the HEDS gene? TNXB is finally being spoken about more.

Dr. Anderson of the muscle and joint clinic in San Rafael, CA, is very knowledgeable of EDS. I've only been seeing him for a month, but it has been extremely helpful in identifying instability, and releasing tight/compensating muscles before doing any strengthening.

As long as I can remember I have bowed limps.Straight /flat neck..Flat feet that clubbed total foot reconstruction surgery 4 years ago. At 52 I am fighting IIH and TOS and disabled.I am my very own Bobblehead..

Great discussion. Unfortunately getting a dx beyond Fibromyalgia is darn near impossible in today's patient care environment. I have been to a great pain clinic. I was diagnosed at thirty by a great Rheumatologist for hypermobility and then assigned FMS as my dx. It is wrong, but I work with what I have. Chronic pain will be a constant problem and managing all of the system issues is almost a fulltime job. At 62 it is good to find out Yoga is bad because that has been my focus lately. Strength training with weights in a very controlled manner seemed best for me. Wishing everyone luck on the journey to wellness. Keep trying, keep living, and stay positive.

My physiotherapist diagnosed me with hEDS, she's a researcher and specialises in EDS. But she doesn't have the authority to formalise that diagnosis, that falls to my GP. My GP on the other hand doesn't belive in EDS ME/CFS, Fibromyalgia and so on. Basically she'll give me anti depressants and paracetamol to solve all my health issues. I've had joint pain, IBS, heart and blood pressure issues, difficulty breathing (asthma diagnosis but the meda don't work), and a myriad of other issues including hupermobile joints which cause instability in my ankles and hips. Which in turn make it difficult for me to walk. I've fallen over many times due to rolled/twisted ankle, locked knee or instable hips. Doctors only ask how much I've been drinking. I don't. I never have. The only thing I haven't experienced is dislocation. I have been formally diagnosed with ME/CFS and in my experience ME and EDS seem to go hand in hand in the same way ASD and ADHD does. The majority of ME patients have EDS as well. And Fibromyalgia, POTS and so on. I've always wondered about my ME diagnosis since I don't feel like I fit the criteria, yet I do have PEM and many of the associated symptoms. But I also have endometriosis so it's hard to know which is which. Or is my endometriosis just a part of EDS? Unfortunately for me, none of the doctors I've been to seem to take anything seriously. I'm 44, I haven't been able to work due to the fatigue and pain in many years now. I even have a wheelchair, but no disability since my doctors don't take any of my symptoms seriously. The level of care is different in various parts of the world. Thank you for a very informative seminar.

I have Buschke-Ollendorff Syndrome and many of my joints are hyper mobile. I have also been found to have the COL2A gene. My defective collagen from my Buschke-Ollendorff Syndrome seems to overlap EDS in many aspects. I have spinal stenosis and had my first spinal fusion when I was 30 years old. Even though I have several hyper mobile joints, I have struggled with not being flexible and having zero athletic ability, I have hypotension and temperature dysregulation which has been attributed to my hypothyroidism. How do you differentiate symptoms for patients with other conditions?

Given how sensitive the GI system tends to be in people with EDS, can NSAIDs really be considered safe for long term use? Daily diclofenac made my guts bleed.

For neck instability you need to find an experienced DOCTOR IN PROLOTHERAPY

very disappointing none of the doctors speak about addressing nutritional deficiencies that contribute to symptoms

In both My pregnancies I had my rib subluxation as I got further along. I also had a lot of fainting and heart episodes about half way through both the pregnancies. The rib pain was horrible! My first baby was breech.

I’m worried I have an undiagnosed condition or syndrome having to do with all my ligaments and or tendons. I’ve dislocated my shoulders 11 times. Had surgery on my left 10 years ago and surgery on my right a couple of weeks ago. There is a lot of grinding around my shoulder blades. I have instability on the left side of my jaw and I constantly pop my ears throughout the day. I have woken up with my jaw dislocated and needed to massage it back into place several times. I have been experiencing ringing in my ears more frequently and loudly lately. All this seemed to get worse after attempting unsuccessfully to scuba dive some years ago. I had orthodontic work done as a kid but now I need more. I was going to start on the TMJ path until I dislocated my shoulder again. There is a spot in my spine around my lower middle back that clicks/pops when I straighten my posture and has been getting more and more pronounced/uncomfortable over the years. My knees frequently lock or stiffen up on me and I have to self adjust in different ways to get them to pop and return to functional, and I have a strange ability to pop my ankles over and over. I need to get to the root of the problem rather than treat each symptom as they arise. Any thoughts or advice? I’m 34 years old.

I have been researching lipedema and EDS for several days, and I need medical help. Sure hope my PCP will be able to direct me for evaluation.

I'm dealing with a torn rotator cuff from painting my house. My niece was diagnosed with EDS and it never occurred to me I might have it even tho I've always been double jointed. We compared symptoms and now it makes sense. I just got used to all the weird physical symptoms I've experienced my whole life. Now I'm about to start physical therapy for my very painful shoulder and think maybe I should get a diagnosis before beginning it.

My kid had a 2 vessel cord, one of the markers of eds. He has it. Runs in family, nobody realizes it causes pain.

I recommend Casa Colina Rehabilitation Hospital. The PT department has EDS trained professionals. I am very please with their care and highly recommend Casa Colina Rehabilitación Hospital, Pomona, California

32:56 Dr Wilson in Ft Worth Texas has experience doing this kind of stuff.

Dairy and berry and magnesium make me feel better. But there all expensive to keep up with.

I am 70 years old, live in Arkansas,….need anything else need to be said. All the symptoms, signs, still no diagnosis 😢. Warm water mild exercise really helped when I was younger but digestive problems..

Is there any Dr's in Indiana? My daughter went to Cincinnati but she's 21 now. I also need to see a specialist too. I have all the symptoms 😔

I've been trying to figure out the type of EDS I have due to having children I can't see genetic doctor is there a clear way to figure out the type

Any recommendations for a knowledgeable Dr in MO. My eds doctor retired, an the doctors I've seen are undoing all the progress made with my doctor. I've went from being a functional adult maintaining a household with kids and a disabled son (age13) who relies on me for bathing,changing,dressing,feeding,ect. to struggling with basic mobility. The reality of becoming unable to care for my son is devastating, knowing it's something that can prevented by following even half of the request my previous doctor made is beyond frustrating.

Is there a known issue with a persons blood vessels bursting while trying to place needles in the vein for sedation? I’ve had multiple blow outs under this issue. I can’t find a Dr to even talk to about what needs to be done for me.

I hate that they want to Gatekeep on fusion surgery out of fear that someone wouldnt heal well. Come on, Sir, that train left the station. It really cant get worse only better. That is the reality when you are looking fir a fusion. Its your last ditch chance. Dont gatekeep that. Before my fusion I had no quality of life

My son shows signs of both eds and akylosing spondylitis is there any info on any connections?

My granddaughter has EDS, POTS, irritable bowel with constipation and autism with dylexia and dysgraphia. She has at age 11 had a spinal fracture we couldn't explain and her feet are turned inward (pigeon toes) despite ankle surgery. Is autism associated with EDS? Learning issues? Her sister also has EDS and had a ciari that had to be surgically treated. Is this common with EDS? Help!

All the drugs you have mentioned , I am Allergic to. Had a nerve block for an Ulnar nerve repositioning and have been having severe headaches and double vision. Could you please shed some light on my signs and symptoms .

I've been diagnosed with Classic EDS and I think my mother had it I'm positive my son has it and my daughter. I was diagnosed at the age of 61 years 9 months and I m waiting for nerve block injections

NSAIDS breaks down collagen. Important to distinguish between tendonitis and tendonosis and especially not apply NSAIDS to the latter. Curcumin a better choice,

Would steroids helps with muscle tone for patients? 🤔

Can you take collagen to help with this diagnosis

...sounds like the symptoms come about because of the body being folded in on itself, due to lack of sufficient structural support. Our bodies have to resist the pull of gravity as well as dealing with day to day wear and tear, let alone being in an accident or falling etc. Despite the injuries that ee have to recover from our bodies and highly intelligent and are built to adapt to any condition, evidence is all around us...ppl walk w limps or mave decreases rom in some areas, maybe cannot "move" as fast as when younger and we chalk these instances up to old age, when in fact our bodies are designed to heal and function at high levels for many years past what is normally considered prime years. Just a few thoughts as i enter year 45...recovering from frozen shoulder brought on from an injury in my 20s.

Is Marfans somehow related or connected to EDS?

The only thing that has helped me is LDN & and cannabis. The entire pharmacy they threw at me only made me sicker and miserable and depressed.

one of doctors mentions 2 helpful plant supplements I havent heard of. Anyone know how to spell the names of the herbs?

I like how everything is non narcotics all because people had to wreck it for ppl like us who suffer from pain by abusing them so glad I’m in Palliative care cause all these pain clinics don’t believe in pain medicine I have autosomal dominant osteogenesis imperfecta and autosomal recessive ehlers Danlos syndrome and caffey disease according to my genetic test results I didn’t start getting worse until March 2017 I’m now 30 years old

I tried LDN for two years, really gave several different doses a good long try and it did not do anything you say it will do at all unfortunately. I really need pain management and i have an appt this week. I just dont know what to do anymore.

Food grade diatomaceous earth might be good for EDS as it is rich in silica which is a building block for collagen.

I have EDS classic and my immune system is so low. Any idea why?

ldn??

All thanks to Dr Aba for curing me from EDS Am forever grateful ..

I have been to so many doctors all my life insurance companies at the top people were the problem they've known about this for a long time

Walking can be great exercize if you do enough. Wear comfy shoes, go faster as you improve. It's a good way to avoid injury and strengthen the spine.

Try prolotherapy for cervical instability 1st

15:00-15:05 multiple organ involvement not really discussed qhen said we got through thus. Perhaps its coming.

I asked my doctor for naltrexone for my Eds and they said only a psychiatrist will prescribe it and only if I’m an alcoholic.

I stopped listening when NSAIDs were recommended. Things that damage collagen... and make me go, "Hmmm!" Nope.

LDN?

I call my EDS a pain in my backside! Because it causes me excruciating pain! My Neurologist was the one who had diagnosed me, I also have Epilepsy. So I’m what I call myself to be is a Purple Zebra ( purple to represent Epilepsy and the Zebra to represent EDS). Collagen is like the mortar that holds our body together like mortar holds the brick on a house together. I play the keyboard 🎹 and it hurts me to hold a ink pen for a long time, I do better using a pencil with a rubber sleeve on it. I have problems with heavy perfume or cleaning supplies, candles. They take my breath away. I have EDS type two. I also suffer from Acid Reflux and Asthma. I take Famotidine for my stomach and ProAir for my asthma.

If I had a penny for every issue I would be rich… I quit taking the pain pills because the only thing that even touches the pain is muscle relaxers and gabbapentin Everything is opposite for us it seems

im 62, my mother died delivering me of a hemorrhaged uterus. My knees would dislocate starting around the first grade. No one had a clue. After many subluxations, dislocations and injuries ive had 14 different surguries to repair damage, arthritis, and relieve pain. Both knees, elbow, shoulders, wrists, hands, cervical and lumbar spine, even my keister. I always had it, so I've adjusted over the years. I often say that if it hit me all at once, the pain would make me want kill myself. Worst thing is i gave it to my kids. At least they know and take easy physically. I didn't find out til my mid 30s. I drove a oil tanker tractor trailer, a redimix cement truck and studied Krav Maga for many years. I should have been playing chess

25:55

19:37

Chopsticks I can never use chopsticks Canadian born Chinese heritage 1963 I was born never got I can’t use chopsticks I don’t know how well I can use them I do know how but it hurts my fingers are like Craig ever since I was a child and I was never forced to use chopsticks thank goodness my parents somehow I understand I don’t understand I was the only one allowed not to use chopsticks and we had major major what do you call it... Functions Gális while we rented out the whole restaurants like in Toronto Ontario siren dragging the whole restaurant will be rent it out because of my grandfather for his birthday any functions like Chinese new years etc. etc. and we’re talking 10 course Chinese servings... And they’re always a traditional 10 course meals that I will technically be a roughly about five maybe four out of the 10 but if you eat them for over 50 years he just get really hungry like you’re starving yeah there’s a lot of healthy stuff but like wild mushrooms not never got into that stuff but the good stuff like the fish the lobster etc. etc.

“yoga is poison” is such a gross generalization I can’t believe they actually said that. everything we do is risky, everything can be made safer through conscious awareness of joint function. since I’ve learned about my body and how to practice safely, yoga has been infinitely beneficial when compared to the dozen shrugging doctors i’ve seen.

Weill Cornell is horrible at treating or coming up with long lasting cures for chronic pain syndromes eg Eds, fibromyalgia, complex regional pain syndrome, myofascial pain syndrome.

NO TO GABAPENTIN

All this sucks

You guys have no idea what yoga is. Come out of that barrel. If you only do passive strech, your doing yoga wrong.

15 APR 2019 When Lyme disease and Ehlers-Danlos syndrome overlap ella steinbeck, ehlers-danlos and Lyme disease by Ella Steinbeck I have been absent. Not just absent from my regular activities or a couple of dinner parties but I have been absent from life. I have something called Ehlers-Danlos Syndrome. It’s painful and horrible and since it affects collagen there is no part of my body that is off limits. If you have time to Google it, I suggest it. It’s all very medical and interesting if you’re into that kind of thing. Very Dr. House-y. You’ll learn about connective tissue, mast cell activation disorder and POTS or dysautonomia. That will all sum up EDS in a very confusing package with a not-so-pretty bow. I have written about it in the past in a column titled “Dealing with Ehlers-Danlos…or why hyper-mobility isn’t a cool cell phone plan and doing the splits is bad” in The Rockland County Times. Lyme disease enters the picture Two weeks ago, I found out that I have Lyme disease. Late Lyme. Chronic Lyme. This means it’s gone untreated and has settled into my body for many years. Another illness. How can this be? I’m not exactly sure when I contracted Lyme or if I had multiple exposures. But I can safely say I either got it when I was 29 years old or when I was 6. I wish I was kidding. How is this possible? Where should I start? This story is not exactly what I would call “linear.” Bear with me. I was (and am) having a ton of cognitive issues, depression, anxiety, and physical pain. My memory had been getting progressively worse. I was having a hard time with word retrieval and getting appointments right. Brain fog is part of Ehlers-Danlos because we often times have autonomic dysfunction. (Depression, anxiety, and autonomic dysfunction are part of Lyme as well, but I didn’t know that yet.) I’d look at the computer and not be able to recall names of who I needed to email. I would start with A’s and scroll through all of them, then the B’s and so on until I’d see something that jogged my memory. Or, I’d put in a word and hope some old emails would pop up that connected to the person and email address that I was hoping to recall. I had a general feeling of confusion, like I was doing something wrong all the time. Disorientation It was very disorienting and hard to tell people about. I couldn’t think of the words to tell them even if I really wanted to. Every time I told a story, it was filled with “never mind “or “uhh, shoot, I can’t remember.” I would fill in sentences with acceptable words but not the words I wanted to use. It was affecting me socially. I’d opt to keep my mouth shut and do a lot of smiling and nodding. I tried to limit my speech to simple interactions. Why was I getting worse? Could it be Alzheimer’s? It’s possible. I was in a severe car accident when I was 22 years old. I had multiple serious injuries and a traumatic brain injury. I also had several other concussions in the past. I knew I should probably have this looked into. I tried to get into a brain study for TBI and Alzheimer’s, but was not accepted. I couldn’t take it anymore. I felt like I was going crazy. I had to do something. I decided to make an appointment at the Psychoneuroplasticity Center outside of Dallas TX in November of 2018. Why there? They take into account the whole person. They look at nutrition, do brain mapping, investigate the adrenal system and assess hormones. I felt this was my best shot at understanding whatever was going on inside my brain and body. Lo and behold, I found out I qualified for Mensa and didn’t have Alzheimer’s disease. Yay! Brain inflammation I do have brain inflammation and some malabsorption issues. I have a bit of a learning disability or ophthalmological disturbance called convergence insufficiency. It’s addressed with behavioral optometry and can be rehabbed. I’ve been pretty successful with that actually. As an aside, I’m not sure you should qualify for Mensa if you didn’t even know your IQ was being tested. My brain also has enough Delta waves. This is why marijuana doesn’t work for me and makes me depressed and paranoid. I’ve never smoked pot successfully. When I say “never,” I mean never. I can’t use medical marijuana and it won’t work even if you have “really-good-stuff-man.” Right before I got my diagnostics back from the PNP Center, a doctor I saw for a pain treatment had a hunch. He said his wife (who was also a doctor) had Lyme. Something about my story made him think I had Lyme. I immediately went for a test, assuming he was wrong. I mean, I was “classic EDS.” Ask anyone or anyone who knows about EDS-cognitive issues, joint pain, POTS and mast cell issues are all present in Ehlers-Danlos Syndrome. Turns out they also show up in Lyme. My weird allergies, interstitial cystitis, and migraines can all be EDS…or Lyme.

Just a note to say that Wikipedia says that the most effective painkiller for EDS is Tramadol, especially for myalgia (muscle pain). Research Tramadol Hydrochloride Prolonged Release tablets - the Marol brand. There are many different brands but some brands are much less well formulated than others and so don’t work as effectively. Maximum dose is 400mg per day and this may be necessary. The Tramadol works best when taken with 400mg of Ibuprofen. Again, chose a reputable brand as some low quality ibuprofen brands are not very effective.

Fascinating . My husband calls it irritable boop syndrome (boop is my nickname) I was diagnosed with ibs after my first pregnancy when I was 21 same time I had a lower back injury from giving birth after being put on bed rest still no one can tell me what happened why it's still painful every day for 11 years now and then it eventually became managed and just became a sleu of other things