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Post by carriel on Mar 4, 2014 13:32:05 GMT -5
Hi, My name is Carrie, I was just diagnosed with EDS 3 though I have known I had hypermobile joint syndrome since I was 27, I am now 50. I live with my partner Don and he is extremely supportive. I am currently off work as an x-ray tech and am challenging my disability insurance. Have to go to mediation on thursday, boooooo. I have chronic pain that they thought was fibromyalgia. I have had prolotherapy and botox in trigger points but it didn't last for pain relief and for me was not cost effective.
I have been doing Yang style Tai chi for over a year and have found it helpful. I have a great teacher who recovered from complete paralysis with Tai Chi and she is so supportive.
I have a doberman named Hunter who is 3 and a half and a big goofy boy. I cant wait to go to Arizona this spring as it is immensely helpful for my pain.
I hope with my diagnosis I might get on a better track with my pain.
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Post by AnnieTOttawa on Mar 6, 2014 18:00:02 GMT -5
Hi everyone. Just heard about EDS when my nephew was diagnosed. He is facing eventually fusion of the cords (?) in his neck as he soon won't be able to hold up his head. He just got married (before diagnosis) and he and his bride have decided not to have children because of this. Now we are all trying to figure out who we inherited this from so that we can alert other family members. Suspect that a detached retina and failed rectocele operation last year are tied to EDS plus a knee that can move in any direction it wants plus plus plus. Knowledge is good and with that we can move ahead, right?
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Post by mince2dginger on Mar 24, 2014 10:21:05 GMT -5
Hi,
My name is Anna and my G.P agrees that I most likely have JHS but he also told me that JHS is not a billable diagnosis in Ontario. So what to do now? If I push for the diagnosis what really changes? My mother and grandmother both were hypermobile, and I am sure there were others in the family tree. I am not as 'bendy" as my mother and grandmother were, but still have a lot of health issues that I believe to be part of JHS. My mother died in her early 50's from heart attack following surgery for Hiatal Hernia. I see what I believe are signs that my children and my grandchildren have some of JHS issues. My children would not want to know anything about this and would deny that it is even possible.
If I can get a referal and I am diagnosed what does that really do for me or my kids and grandkids? is it really worth the fight?
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Post by alissa on Mar 27, 2014 9:57:11 GMT -5
Since this is a brand new forum, let's get to know each other a bit. Hi everyone. My name is Alissa. Im 39 years old and after years of being bounced around from one doctor to another for unexplained pain and symptoms, I've finally been diagnosed (through a positive skin biopsy) with EDS 3. At first i was devastated, cried a lot and felt a sense of overwhelming panic, anxiety, fear and devastation. TOday, only 2 weeks later, i feel calmer, more optimistic and less fearful. Its places like this site and other support groups that have given me the strength and reassurance that i am not alone in this fight. I am pretty fortunate in that I am still able to be active and do most of the things i love (minus tennis) but i know that my body is progressively getting weaker and less stable. I feel constant pain in my neck, traps, shoulders and back. MY knees feel wobbly and my wrists and ankles are weak. I am aggressively seeking out the best medical management team for myself so that I can learn to cope with my symptoms and hopefully prevent further damage to the joints. I love reading peoples recommendations (thank you so much tiffany)and stories of hope and inspiration. SO much of pain is mind over matter and all the positivity helps to cope on a daily painful basis. |
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Post by Tiffany Kathleen on Mar 27, 2014 15:22:58 GMT -5
Welcome to all the new members. I am happy to help Alissa <3 The forum is still growing in members, so it's not the most active just yet. Feel free to start your own threads asking questions and exploring other topics  |
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7 
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Post by Carrie Lawson on May 8, 2014 18:33:40 GMT -5
Hi all, Carrie age 51 tomorrow. I have EDS III, I have struggled with Major Depressive Disorder for most of my life, I recently had to leave work behind and joint those on CPP- Disability. I was an xray tech for 25 years and the strain of all the lifting, squatting pushing and the emotional stress of dealing with people who didn't understand my limitations made it impossible for me to work anymore. I love doing x-ray and CT maybe because of all the challenges I have had.
I have fibromyalgia, sleep apnea, TMJ, chronic fatigue, reflux to the extreme, what I now know is gastroparesis, thanks to people sharing. Chronic fatigue, and the nastiness of hyper-mobile joints.
I have a very supportive family Dr that has known me for 26 years. Unfortunately EDS III seems to like to present itself as one ailment at a time, just far enough apart to make it difficult to put the puzzle pieces together into a diagnosis that makes sense.
That is where Dr Gordon Ko comes in. I have been working with him for 3 years. He has tested for Lyme, Vitamin Deficiencies, Digestive Deficiancy's, Fibromyalgia, sent me for a sleep study, genetic testing for EDS, hormonal testing. Had 'em all but Lyme. But I didn't get better, yes the PROLOTHERAPY helped greatly with my SI joint slipping out of place, the BOTOX TRIGGER POINT injections helped with the pain, temporarily! Did he give up? No way.
Now I have a physiotherapist Vincent Warcop who specializes in EDS. I have met with him once and am already pleased. He has reaffirmed my belief that chiropractic is not for me, especially in my neck. He is giving me baby steps to take towards better health and strength which I hope will let me get strong enough to start moving and lose some weight and get some relief for my joints.
I have been wearing orthotics since I was 23, have turned over on my ankles so many times it no longer hurts other than the embarrassment of falling in public, I am afraid of slopping ground for that reason. I have had SLAP repairs on both shoulders, I have spina bifida occulta which may or may not be related, don't know yet.
I wish I could afford all the alternative therapies Dr Ko would like me on but love how understanding he is about my financial situation and how he is fighting the government every step of the way to get things like chronic fatigue, fibromyalgia, Lyme disease etc recognized as serious health problems that are costing the government more in medical costs than preventive medicine that is not covered would cost.
I seem to be on a bit of a rant so I will stop now.
I have a wonderful partner Don, a too cute doberman named Hunter Too and a very supportive family. I live in a house in north Toronto and I love Tai Chi, I recommend it highly, for anyone, even if you are in a wheelchair. My teacher Tai Chi'd her way out of a wheelchair and I love her.
How many other people have gastric issues that have been diagnosed with 100 different issues? The best one on my list is 'nutcracker esophagus".
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Post by JennSmith on May 15, 2014 6:41:16 GMT -5
44- almost 45 yr old mother of 2- WAS fulltime in CCU until recently. Multiple issues have lead me down this path of EDS. All these 'issues' I've had over the years and people thinking.. 'what is wrong with her NOW?!!" and I'm hoping for a diagnosis soon. WIll bring some of these names forward to my Dr tomorrow. I recently had a lumbar facet 'block' and it didn't 'block' anything. In fact, since I don't take to local anesthetics it was awful. Immediately post block I had unilateral facial tetany. No idea why and it still comes and goes. We are also working on a diagnosis of Multiple Sclerosis that has been in remission for 24 years!
I'm looking forward to seeing how everyone is!
Jenny from Muskoka
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Post by Rosemary on May 18, 2014 23:55:10 GMT -5
Hello, I am 59 and have been diagnosed with hyper mobile EDS X 10 years. My two sons have bicuspid aortic valves and aortic dilatations. My two girls have the more hypermobile symptoms, the soft skin, flexible limbs and bruise easily. I find that the effects of the disease are more intense for me the past two years. I wake up in pain every morning now and fear exercise. These are some of the symptoms that I and my family members have that I believe May be connected to EDS, please send me some feedback about these: migraines, loss of memory or foggy brain, fear of hot weather, terrible stretch marks, dizziness, painful feet, painful hands and fingers, hyper light and sound sensitivity. Thanks for this great site to share and learn!
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7
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Post by Carrie Lawson on May 25, 2014 10:22:16 GMT -5
Hi everyone. Just heard about EDS when my nephew was diagnosed. He is facing eventually fusion of the cords (?) in his neck as he soon won't be able to hold up his head. He just got married (before diagnosis) and he and his bride have decided not to have children because of this. Now we are all trying to figure out who we inherited this from so that we can alert other family members. Suspect that a detached retina and failed rectocele operation last year are tied to EDS plus a knee that can move in any direction it wants plus plus plus. Knowledge is good and with that we can move ahead, right? |
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7
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Post by Carrie Lawson on May 25, 2014 10:28:03 GMT -5
Hi AnnieT, about your nephew. When I was working at TWH we did a lot of spinal fusions. They are used to stabilize the spine to guard the cord from damage. We used to put in screws and rods and had great success. I can understand the decision not to have children though it is hard for the families. Don and I decided not to have children because he has inherited Colon Cancer and our children had a 50/50 chance of getting it and I had depression. It was only later that I discovered that I had EDS. I am 51 and though I have days where I miss the "idea" of having kids, it just wasn't in my reality and I am happy. We have a pretty good life but I am glad I have not subjected children to it. One of the most selfless things someone can do is decide what is right for their children before they are born, even if that choice it for them not to be conceived.
I hope you find some support here on the pages.
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7
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Post by Carrie Lawson on May 25, 2014 10:31:17 GMT -5
44- almost 45 yr old mother of 2- WAS fulltime in CCU until recently. Multiple issues have lead me down this path of EDS. All these 'issues' I've had over the years and people thinking.. 'what is wrong with her NOW?!!" and I'm hoping for a diagnosis soon. WIll bring some of these names forward to my Dr tomorrow. I recently had a lumbar facet 'block' and it didn't 'block' anything. In fact, since I don't take to local anesthetics it was awful. Immediately post block I had unilateral facial tetany. No idea why and it still comes and goes. We are also working on a diagnosis of Multiple Sclerosis that has been in remission for 24 years! I'm looking forward to seeing how everyone is! Jenny from Muskoka |
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7
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Post by Carrie Lawson on May 25, 2014 10:34:22 GMT -5
Hi JennSmith,
It can be tough being in the medical field and getting the 'what is wrong with her NOW?!!" I started thinking I was crazy! Sorry you had a bad experience with the facet block. I found Prolotherapy helpful and though painful it was just for a few seconds. That with the botox did relieve my back pain. Dr Gordon Ko is amazing though you might not want to come down to Markham. Good Luck and we are here for you.
Carrie
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7
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Post by Carrie Lawson on May 25, 2014 10:35:26 GMT -5
Hello, I am 59 and have been diagnosed with hyper mobile EDS X 10 years. My two sons have bicuspid aortic valves and aortic dilatations. My two girls have the more hypermobile symptoms, the soft skin, flexible limbs and bruise easily. I find that the effects of the disease are more intense for me the past two years. I wake up in pain every morning now and fear exercise. These are some of the symptoms that I and my family members have that I believe May be connected to EDS, please send me some feedback about these: migraines, loss of memory or foggy brain, fear of hot weather, terrible stretch marks, dizziness, painful feet, painful hands and fingers, hyper light and sound sensitivity. Thanks for this great site to share and learn! |
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Carrie Lawson
New Member
I have two profiles, oops, EDS brain
Posts: 7
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Post by Carrie Lawson on May 25, 2014 10:38:36 GMT -5
I hear you Rosemary. I am 51 and getting out of bed can be hard, I hate that pain that traps you to the mattress! I was diagnosed with fibromyalgia before EDS so have been working on pain management with regards to that. The morning pain was part of it. I too am fearful of exercise but have found a wonderful Tai Chi teacher who is disabled and very compassionate. I can relate to everything except the migraines. I hope you get some pain relief before the summer heat.
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Post by Ali on Jun 24, 2014 22:48:43 GMT -5
Hi everyone,
I'm in the Vancouver area (BC Canada) and am having a really hard time finding a doctor with a good understanding of EDS. Any recommendations?? I am newly diagnosed EDS III however still having a direction as this is under discussion between 2 doctors. Like many of you I've spent a lot of time with quite a few different doctors over the last few years and most recently sat with the diagnosis of fibromyalgia for the last 3 years until this new finding. I'm really looking for any input regarding doctors in Vancouver who have an understanding of Ehlers Danlos or any resources you've found helpful.
Thanks very much!
Ali
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