Introductions- Tell us a little about yourself!

[Tiffany Kathleen]

Since this is a brand new forum, let's get to know each other a bit.

[twich]

WOO! First post on a new thread!

Hi, my name is Dawn. I'm 29 and was recently officially diagnosed with EDS type 3. I went on sick leave 3.5 years ago from starbucks, and sadly as of October, I can't call myself a barista anymore, BUT I hope that when my stomach problems sort themselves out, that I can go back. I live with my Mum, stepdad, and younger sister. I have an older brother who is also currently dealing with a lot of health issues himself, but is a wonderful father to my 2 year old nephew despite it all. I am happily engaged to a wonderful woman who currently lives in the US, but she will be moving up here for her studies this year, and I can't wait. I have a 9 year old female and a 1 year old male cat- Anabelle and Scout, and a 2 year old male budgie- Jade.

Some of my favourite things are: writing, playing guitar, building things or doing crafts when I'm able, playing video games, animals, photography, spending time with family, and fire trucks.

Some of my other conditions include, but aren't limited to: Autism Spectrum Disorder, Fibromyalgia, Possible Reynaud's, ADHD. On a side note, if I ever say anything that comes off as rude, please PM me to discuss it, as I probably don't realize it came out that way and I'd like to be informed so I can a) Apologize and clear things up, and b) be less likely to make the same mistake again.

I look forward to meeting and helping fellow EDSers!

[Deleted]

Hi Dawn! First off, I'm happy to know that you can upload a REAL picture as a profile picture because to be honest I really don't like these Avatars....this looks nothing like me. lol So, thank you for showing me that can be done!

It sounds like you've got a full house. Love all of the pets, you are a woman after my own heart. Nice to have you with us!

I have EDS Type 3 as well. I also have Chiari, Hemiplegic Migraines Type 2, POTS, TMJ, OA, BPPV, and I could go on but we might be here for a while. I have a wonderful 14-soon to be 15 year old daughter and 2 German Shepherds.

[Tiffany Kathleen]

Hi Guys,

I'm Tiffany and I have Classic EDS. I was diagnosed with Hypermobility Syndrome in 2006 and EDS in 2010. I am 31 and married to a great guy. It's just us, no kids, no pets. I live in Milton, ON. I was born here in Ontario but spent my childhood in Langley, BC.

In other random health issues, I have Asthma, Allergies and almost all other atopic illnesses Ack, LOL!

[scaryclarey]

Hello ! I'm from Birmingham , uk ! I m 48 , single , been off work since '97 . Diagnosed type 3 but possibly moving to classic- tbc .
I have a large Yorkshire terrier , Thunderpaws 111 , the star in my life !! I adore him !!
Thankfully I am well supported by family and friends .
I love to sing and am in two choirs .
Wishing everyone a peaceful new year .

[kat r]

Hi, I'm Kat from Ontario. (i am waiting for approval to join the forum, hence the guest status.) I was diagnosed with EDS about 4 months ago. I am 45. I think I have the hyper-mobile type, but I am waiting for an appt to be able to see a geneticist to determine what type I have.

I am dealing with chronic joint and muscle pain, a headache(dizziness. nausea) that has been going on for almost 100 days, gastroparesis, sciatica and a doctor who only wants to push meds on me. (even though he knows almost all meds make me throw up.) He will not order a scan of my head/neck and won't send me to a specialist. He says it's "probably the eds" that is causing it the headache.

A year ago my life was very different. I was doing at least 8 hours a week of yoga and I was very active. Since last spring, I have really gone down hill. I have just recently started pole walking, so that i can get some form of exercise. I bought some urban poles and I am really finding that they take a lot of pressure off my hips and knees making it easier to walk.

I am happy to have found this forum!

[Deleted]

Welcome! We are happy to have you!

[Tiffany Kathleen]

Adjusting to life with EDS is really a mourning period. You are grieving for your old life and learning to accept a new one. Big changes, indeed!

[happy thoughts]

HI I have been diagnosed with EDS type 4 (VEDS). I live in Ontario and am having hard time finding a specialist in the area. I just read Jolenes post of a doctor in Toronto and was curious as to who she see's as my current doctor is in Toronto as well. I have aneurysms and had a blood clot as well. I suffer from joint pain, which some dislocate and my legs throb everyday. Hoping to find people on here for support maybe with same type and hopefully a doctor who knows something about this syndrome.

[awareness]

Hi Happy thoughts! I guess I'm surprised that your current doctor wouldn't know who to refer you to. One name that comes to mind is Dr. George Oreopoulos at The Toronto General Hospital. There are some really good ones in the University Ave hospital corridor. I can't imagine that they wouldn't have at least some kind of training in VEDS given its complexity. Have you ever been referred to one? Are you connected with any other facebook groups? We have some veds info on our website (more to come in the future)but you can always look to the EDNF.org for more info on veds to take to the specialist for now.


I hope you'll find the connections you are looking for here.

[Annas]

Hi, my name is Anna. Still waiting for approval so posting as a guest. Just got dx with EDS type 3 - hypermobility at age 46 by Dr Hanna Faghfoury after decades of debilitating pain and minimal relief from numerous practitioners, some who made me worse. So I guess my "growing pains" that continued after I stopped growing did not actually mysteriously turn into stress-related pains (thanks dad for leading me down that path). Gave my GP an article about EDS from a British journal about 7 years ago. Also gave the article to my neurologist at the Wasser Clinic at that time and asked him about hypermobility. Only since I lost my ability to work at all have I had the time to research and push my docs enough to get to the right specialist who FINALLY referred me to genetics. Thankfully I qualified for CCP-Disability based on a dx of fibromyalgia along with ulcerative colitis, TMJ, migraines and few other dxs (including ADD Twich. I knew I had it because I learned all about it in university but I didn't have the time or need to get assessed until recently. Feel free to PM me Twich if you want to discuss ADD/ADHD). I have no children bc of this disease but I do have an awesome stepson, age 18, who I've been step-parenting for 8 years and a 21-year-old stepdaughter who lives in BC. I knew I couldn't have kids myself. I could never handle lifting a baby let alone everything else required of a parent, not to mention carrying a baby. Makes me wonder if that's why my bio mom put me up for adoption. She put in an adoption veto (preventing me from finding out her name or my father's name) just before the regulations changed allowing all adoptees to know the names of their birth parents so I can't find out who she is, at least not through the normal channels.



I used to be a psychometrist until a couple of years ago (testing kids for learning disabilities and other cognitive or social/emotional problems). I had a great full time job with good pay and benefits but not a good job for my body unfortunately. Waaaaay to many repetitive movements...flipping pages on easel-style books for kids to look at, reaching across the testing table, writing on clipboard, reaching to get heavy manuals, and typing when I wasn't testing. I adapted my work environment as best I could with zero assistance from my employer who could not even provide proper chairs. No new chairs at all available for psychometrists, only old used chairs tossed aside in a large room for other employees in underfunded depts to sift through. Ya I'm still trying to let go of that anger.



Anyway, I'm soooo glad this forum is here. I'm so glad to see there are already some members. It seems like Canada is way behind the UK re diagnosing EDS. Correct me if I'm wrong. When I searched for journal articles a while ago there was nothing from Canada.



Has anyone found ANYTHING that helps the pain? I'm trying osteopathy for the second time. Also looking into the Alexander Technique which helps you become aware of your posture. I think my proprioception is on the poor side. Now I know why I'm soooo bad at dancing LOL! I even took classes, no luck. This article describes proprioception pretty well. www.sensory-processing-disorder.com/proprioceptive-dysfunction.htm



As for medical treatments, aside from meds, I've tried trigger point injections a few times (both with Botox and cortisone and with the anesthetic alone) at the Wasser clinic, IV lidocaine infusion at Allevio Pain Clinic. Next I'm going to prolotherapy and facet block injection(s) at Allevio. I recently heard about another clinic that offers these treatments in downtown Toronto as well. The doc is Dr. Jag Gupta.



Twich, your girlfriend is lucky to have you. You seem like a lovely caring person. I have two cats too. They were rescue cats. They are sisters and they were both preggers when they were rescued. They had their litters around the same time and they nursed each other's kittens! How adorable is that?! the kittens were adopted out first so we didn't get to see them but we have picks. We were only planning to adopt one cat but how could we separate these two after all they'd been through together. Molly and Peakers saved my life when I was going through a really bad time. My main hobby aside from posting about Karina Hansen (that's another story) is taking photos of the endless adorable things our kitties do. Sorry for the looooooong post. I just so glad to have a private forum that's Canadian! Yay! I like the GTA-ME-FM Facebook site but I recently discovered it's not private! Hopefully it will be soon. I notified the moderator. It's a new site so I don't think she realized she needs to set it up as private.

[Annas]

Question for Jolenelisa. I Googled Dr. Chandran. Is he a rheumatologist at Toronto Western? I found thus link www.cepd.utoronto.ca/psoriaticarthritis/faculty/vinod-chandran/ (If this is by chance the Jolene I happen to know through Jo-Anne, my lips are sealed.)

[awareness]

Hello Anna - just a quick note (I'll write more later) Welcome aboard! Dr. Chandran is a gp in the downtown GTA. He unfortunately isn't accepting new patients at this time.

[kat]

hi anna: have you tried the rumble roller for trigger point/muscle pain? it's really helping me more than osteopathy, massage, other rollers or acupuncture. i got the big blue one. using the rumble roller is painful at first, but i cannot believe the difference in my muscle pain.

take care!

[Anncanguest]

Awaiting approval.

I am Ann in the Niagara region. I have not yet had an official diagnosis but I'm pretty certain I have EDS type 3

I'm currently pulling together my history to present to my Dr. Until about 3 years a go I had never heard of EDS. I had been told as a child I had joint hyper mobility but that was it - I just put up with all the sprains and partial dislocations. Over the years I have had issues with headaches, my back, my digestive system and it wasn't until I heard of EDS that I realized they were all connected. Due to several relocations, my doctors have changed and therefore haven't had a full picture of my health issues.

I am married with two children and we have 2 dogs, 2 guinea pigs and a hedgehog. I homeschool our children