My Wife Had EDS and Did Not Know it!

My wife died in 2008, the same year my daughter was diagnosed with EDS. We have dedicated a new program in her memory at www.edsawareness.com. We are helping to form new EDS Support Groups and creating a directory of EDS Support Groups. We are also hosting 2X monthly live EDS Educational webinars.

Written by edsawareness, published 9 months ago.

My Wife Had EDS and Did Not Know it!

We were married for 41 years. You’d think that after all of that time you would know everything there was to know about a person.

- I knew Carol was a loving person who would do anything she could for the kids and the family.

- She was a social worker and very concerned about the comfort of others

- She didn’t complain and didn’t want others to worry about her.

The symptoms started shortly after we were married in 1967. Carol was a very energetic lady who had just graduated with honors and a master degree in guidance and counseling and she was anxious to start this new career. She also was somewhat a “perfectionist” who wanted to keep the house clean and organized … but started to develop some pains as a result of all of this. I remember we attended the Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented at how “flexible” Carol seemed to be during the exercises. Our first daughter Deborah was 4 weeks premature and the second daughter Deanna was 6-7 weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.

Carol’s joint pain got more severe in the 80s. She was the first director of a new “Crisis Hotline” in the Cleveland, Ohio area and she was working unusually long hours. With all of these mental and physical stresses she was going to a chiropractor monthly and then weekly. She was getting massages on regular bases. Initially, her neck, back and shoulders were the major issues. Then she developed chronic problems with her hips, knees, feet, etc. The doctors did not seem to understand her pain and they could only recommend pain medications, topical creams or muscle relaxers. It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe Fibromyalgia … but they were not sure.

She could only sustain working for a few more years with flexible hours, then it got to be too much for her physically.

She described her constant pain as “achey or throbbing”. She had frequent episodes of radiating pain, stabbing, ’pinched nerves’ and numbness. She would say things like ”I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body.”

She would describe affected parts of her body as: shifted, twisted, crooked or her favorite word “dis-combobulated” (meaning everything is zig-zag and out-of-whack).

We had never heard of joint hypermobility or Ehlers-Danlos Syndrome (EDS). We did not know that her symptom descriptions were suggestive of unstable, loose joints.

Soon, I discovered that I was taking over the household tasks of cleaning, doing the dishes and the laundry. Some family members commented that Carol “looked perfectly fine” – so she must be lazy and just taking advantage of my help. I knew there was a problem with her pain, but I did not know what it was or what else to do to help.

In addition, Carol had severe environmental allergies, IBS symptoms and an extremely “sensitive” stomach. She avoided certain foods, spices, and oral medications due to this. Her allergies often put restrictions on where we went out for dinner or social activities and where we purchased certain items – always avoiding chemical odors, dust, pets and cigarette smoke, etc.

Carol had very flat feet and was prescribed orthotics. Her feet were always hurting and finding comfortable shoes was challenging. She had very sensitive hearing and was a very light sleeper. Even low volume noises or voices in the next room would wake her. Pain and disturbed sleep meant she always woke up exhausted!

Carol had a lot of extra pain if she tried to carry something that was awkward or too heavy (ie. weighing more than 2-5 lbs., depending on her pain level that day.)… By age 8-10, my daughters could carry heavier items than Carol could, so the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and, got the kids off to school.

As a result of her sleep problems and pain, she was in bed until the kids got off the schoolbus. The girls would run upstairs to the bedroom, eager to spend some quality time with mom – as she was getting out of bed in the middle of the day. Moments like these with her girls gave her some comfort and support. The girls remember these as a special times, but they sometimes felt embarrassed – they could not tell anyone that their mother was in bed all day.

Carol’s muscles were always tight, and she often described her pain as if “one part of her body was pulling at another”. (For example, my shoulder is pulling on my neck.) The only exercise she could tolerate was very slow walking – that is, if her hips were having a good day. She loved walking slowing, at sunset, in the park. She had pain driving a car and searched extensively to find the most comfortable car – so that she could remain independent. It was very stressful for her to be a passenger in a car; she would try to brace herself for the starts/stops, bumps, and turns. If I was driving, she would request alternate routes for straighter roads. Even gradual curves on the highway caused additional neck, shoulder & back pain. We would sometimes go 3 or 4 miles out of our way to find a smooth straight road for her to travel on.

We never knew these were telltale symptoms of joint hypermobility.

She was always very discouraged that the doctors did not believe her and she stopped telling them about her pain because the tests came back “normal”. She was told there was no treatment or even a REASON for her pain…. Doctors told her she was overly-sensitive, exaggerating, or “Oh! it’s just all in your head…”

It really bothered her that her medical records said all those bad things about her “mental state”. She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.

We continued to play out this very difficult lifestyle for decades – until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took its toll on her and she had a major struggle with clinical depression for a long period of time. After that she was on so many medications that they masked many of the original symptoms.

Carol passed away in 2008 of breast cancer… the same year my daughter, Deanna, was diagnosed with EDS. In her early 20s, Deanna developed many of the same symptoms and pain as her mom had. They often talked about the similarities and offered each other comfort and understanding. Looking back, Deanna recognizes that her back & joint pain during her child and teen years, wasn’t normal.

Deanna heard about EDS through an EDS patient who worked at a local cancer support center… NOT from a doctor. This EDSer took the time to notice Deanna’s wrist braces and ask her about them. Then she told her about EDS.

This encounter was 10+ years too late! More than 10 years prior to this, Deanna was diagnosed with instability in both wrists by an orthopedic specialist at a well-known hospital. The doctor gave no explanation about hypermobility. He did not mention that she might have a similar condition in any other joints (despite the pain.) The treatment was pain medication and one visit with the occupational therapist for “strengthening” exercises – which made her pain worse. Deanna’s joint pain and other EDS symptoms continued to escalate rapidly during the 10 years between her potential diagnosis and her actual EDS diagnosis…

If only SOMEONE had told Carol about EDS... it would have saved both mother and daughter much suffering, loneliness and judgment. I don’t have room in this article for all the details about how undiagnosed EDS harmed my wife & daughter’s lives. Just believe me when I say emphatically – had they known about EDS, their lives would have been dramatically different!

Tell someone about EDS everyday – I do! YOU could improve a life, or even save one!

Each year, only 5% of EDS sufferers are diagnosed with one of the 6 major forms of Ehlers-Danlos Syndrome. It is estimated that EDS affects more than 1 in 5000 people worldwide, not to mention over 650,000 sufferers per year, in the United States, who go undiagnosed due to physician oversight or lack of knowledge about the condition. Many afflicted with EDS – and the people who care for them – don’t know where to turn for information, advice and help with the issues surrounding EDS such as treatments, therapies, practitioners and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing.

Ehlers-Danlos Syndrome (EDS) is a genetic defect in collagen protein (the “glue” that supports and holds the body together). EDS causes chronic pain, joint hypermobility (“double-jointedness” and fragile joints) and affects multiple other body systems. There is no “fix”- no medicine or surgery – that resolves this condition.

Many of those suffering from EDS are never diagnosed during their lifetimes. They suffer in pain for many years and die still not knowing why they had the pain.

Carol can finally rest in peace. Love eternally, John

_________________________________________________________________________________________________

EDS Awareness is critical!

Only 5% of EDS patients are correctly diagnosed. More than 650,000 Americans/year remain undiagnosed and have never heard of Ehlers-Danlos Syndrome. It is the intent of www.EDSawareness.com to locate these sufferers and help answer their questions, such as:

- How does one learn more about EDS?

- If a person thinks they are affected by EDS, what’s next?

- Where can an individual get help and a diagnosis for EDS?

- Once diagnosed with EDS, what kind of support is available and where is it found?

www.EDSawareness.com is a new resource for the Ehlers-Danlos Syndrome community. Our vision is:

- To assist and encourage support groups to organize and spread knowledge about EDS in their local communities

- To help EDSers locate valuable information, continue to learn, and create resources to share with their EDS peers

- To educate and inform medical practitioners and the public about Ehlers-Danlos Syndrome

- To promote EDS awareness on a local and national level

Tell someone about EDS today and everyday!

Written by edsawareness, published 9 months ago.

42 comments for «My Wife Had EDS and Did Not Know it! »

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  • Monica | published over 4 years ago | Originally written in English

    Dear John,

    Thank you so much for sharing the sad story of your beloved wife Carol, and your children. It breaks ones heart to hear how cruel ignorance in the medical field can be. Your wife's life could certainly have been made easier had someone only had the knowledge to give her the correct diagnosis.

    It is a wonderful thing on your part to have started the special program to help facilitate the diagnosing, and subsequent steps, of EDS!

    God bless you and your family!

  • Graciela | published over 4 years ago | Originally written in English

    Dear John, It is almost incredible how much your wife had to go through, with no answers to her troubles. May she reast in peace.

    It is good and very nice from you to give awarness of EDS and your daughters can take care the correct way of their health.

    I, myself still have troubles with some of my relatives. My aunt was a doctor and she was considered very good and wise; when I explained my troubles she would answer "that never happens, seach better excuses". When I met my husband he at first thought I was lazy, but when he saw with his own eye the joint failiur, he started looking for answer.

    The day I heard about EDS I was so happy, I felt like dancing and jumping. While my husband started suffering a deep depresion. When I told my aunt about EDS she just laughed and said that was an excuse with exotic name, but she was sure I had nothing.

    I had to go though the terrible experience of letting my husband decide if he wanted to keep our relationship or rather get the divorse, so he could go ahead with his life without me. Fear was the only thing I had then.

    He spoke with my family and when he saw the way my aunt had influenced them, he decided he was in love with me, for the my way of thinking and doing, not for being a beauty. So now he helps me as you did with Carol, John.

    Trying to have the best of life that we can enjoy and share with good will as much positive feelings to those close to us. Because as you say, I know there is nothing to be done for treatment to help fight it.

    Thanks for helping with sharing Carol's story, it's a lesson many should pay attention.

  • jaapsmit | published over 4 years ago | Originally written in English

    Dear John,
    Thank you for your heartbreaking story about your wife Carol. It reads like a textbook on all the different symptoms of EDS in a severe form. How utterly unhappy that there was no one who could diagnose or at least figure out about EDS. Elsewhere I have told the story about someone who had 'treatment' in a psychiatric hospital for several months because of her obsessions with symptoms that did not have any reality in her fysical situation, according to the doctors.
    Luckily your daughter doesn't have to suffer this unknowing!
    I know that diagnostication of EDS is inefficient. But I thougt there are several active support groups in the USA. Maybe it is best to work together with them. Or did you try that already?
    I sincerely hope that more knowledge can and will be shared worldwide. This community in Eurordis is certainly a possibility to share experiences and support each other in living with EDS.

  • edsawareness | published over 4 years ago | Originally written in English

    Monica,

    Thank you for your kind words and understanding. My daughter and I have dedicated this new program (www.edsawareness.com) to Carol and her unselfish life, as a social worker, of helping other in need.

    God Bless,

    John

  • edsawareness | published over 4 years ago | Originally written in English

    Graciela,
    Thank you for sharing your story. You are blessed that your husband finally came around and continues to be there for you. We have talked to others with EDS who have had similal problem but not with your loving result. We know the challanges that EDS creates. We have a better understanding and this is my daughter and my passion to impove EDS awareness.
    God Bless,
    John

  • edsawareness | published over 4 years ago | Originally written in English

    jaapsmit,
    Thanks for reading and commenting on our memorial to my wife, Carol.
    In 2008 my daughter and I starting getting involved with EDS Groups. We attended the EDNF.org US National conferences. We asked what we could do to help and they told us that there was a need for more local EDS Support groups. We were recently a sponsor at the 2012 conference in Cincinnati, Ohio and launched this new site to help create new EDS Support groups http://www.chronicpainpartners.com/categor... We are providing information, free web site pages and a directory of new and exisiting EDS Support Groups in the US and Canada http://www.chronicpainpartners.com/support... We are getting a good response. We also select and sell products to help EDSers at www.bodysupportstore.com. These sales support the web site activities. I have since retired and I am spending full time on this mission.
    God bless,
    John

  • jacquip | published over 4 years ago | Originally written in English

    Dear John.Thank you for sharing your beautiful wife's story of courage and love despite all the pain she so obviously had.Thank you for raising awareness for EDS.I truly understand how devastating this condition is,and I am inspired to do more for awareness here in Australia,because of your story.

  • edsawareness | published over 4 years ago | Originally written in English

    Jacquip,
    Thank you for your kind words and support for EDS Awareness. We formed 3 EDS support groups this week and each one is a story of dedication to helping others deal with this devastating disease. We know there is no "fix"... no surgery or pill to resolve this condition. But there are many loving people there willing to help ... just given a little encouragement and guidance.
    God Bless,
    John

  • cherylannferricoffybeans | published over 4 years ago | Originally written in English

    John,
    Thank you for sharing your personal story.. What a touching and beautiful tribute to your wife.. As I read other's stories I find my self nodding.. "yep.. " "oh so true".. "of course".. "why do you have to look sick".. "when will people understand"... and on and on.. At times it feels overwhelming... but it is my hope and prayer that through the stories and information that we as a community are now able to share, we will make a difference.. We will raise awareness, find helpful solutions, and maybe.. just maybe someday erase EDS from the world..
    God bless you and your family..
    cherylann

  • Mariolene | published over 4 years ago | Originally written in French

    dear John, your testimony is beyond everything, and it is with a lot of emotion that I read it, some of the points mentioned show so well the incredulity of the medical professionals when they do not know or do not understand, and it is together that we can be stronger
    I think about Carol and about your daughter of course, they should not hesitate to come and join us in our community, a virtual place but no less concrete as we are close to celebrating Christmas, hugs and kisses, Marie Helene, AFSED, France

    Notice: This text content has been translated automatically by a third-party service.

  • tinacooper | published over 4 years ago | Originally written in English

    John thank you so much for sharing this story. I think it is awesome what you are doing with your situation. You have taken a devistating lose and turned it into a positive. You are making sure that the pain and suffering your wife spent leaves its mark on this world. I am so very inspired by your story. I read this and was like I was reading about myself. Even the picture you have posted. I see distinctive features of EDS. I am so sorry that she was not diagnosed and given some relief. I was lucky. Diagnosed early. However most are not. Thank you for everything you are doing to promote awareness.

  • kathleenkeller | published over 3 years ago | Originally written in English

    I didn't know it till I was 48, when my daughter was diagnosed. Lost so much to this condition, including, based on my ex husbands assumption that I was a lazy good for nothing drug addict, my home and all my possessions ( and of course some of this is based on the fact that he is just a rotten human being) I'm 50 now, maintaining a work at home job, a home and a good relationship. I miss hiking and biking.

  • spanglebelt | published over 3 years ago | Originally written in English

    Dear john, you are so right. x

    "If only SOMEONE had told Carol about EDS... it would have saved both mother and daughter much suffering, loneliness and judgment. I don’t have room in this article for all the details about how un-diagnosed EDS harmed my wife & daughter’s lives. Just believe me when I say emphatically – had they known about EDS, their lives would have been dramatically different!"

    I was left with out the correct diagnosis of EDS until I was 32 and when I spoke to my Prof, he said owing to the lack of diagnosis and the correct care, I have disastrous de-conditioning. It took a long battle with social services, and OT and Physio in a London hospital, but I now have the right care and am able to live a relatively independent life. x

    Good luck in you plan, I have an EDS facebook group which you are more than welcome to add to your directory, and post adverts for your network , or just ask questions on it at any time. x

    https://www.facebook.com/groups/131milewal...

    Keep up the good work.
    And thank you for letting people know about us Zebras (EDSers).x

    Rozz. (Spanglebelt), x

  • debmc | published over 3 years ago | Originally written in English

    So sorry to hear about your wife. I know her suffering well. I was born symptomatic as were both of my children, now adults. In us. the joint hypermobility and neural tube defects were the result of MTHFR deficiency in utero. I discovered the etiology of MTHFR in EDS3 along w/the connection to dysautnomia and mast cell disease. Here is a link to my findings which I make available in the spirit of helping others help themselves. Carol's symptoms smack of untreated MTHFR. Your daughters may want to get tested for MTHFR polymorphism and other methylation SNPs. Except for the small subset w/Tenascin X deficiency, most cases of EDS3 are epigenetic and treatable. Recovery is possible. If I can do it, others can, too. www.mthfrheds.com

  • KatMaritza | published over 3 years ago | Originally written in English

    It sucks that she didn't get diagnosed earlier. Everyone always told me i was faking when I was little and said I was sick. For me I knew something was wrong when I was about 4. My ankles had really sharp pain everynight when I tried to sleep and it would spread to my knees sometimes. I didn't get diagnosed with type 3 eds until I was in grade 12. I also have flat feet which means I have to find shoes that fit with my orthotics in them. I went for physiotherapy to help strengthen my joints.
    In the winter the pain everywhere gets worse. My whole family is trying to be diagnosed. I find braces help with knees and wrists. There's a tea that helps too called horsetail tea. The tea helps with the pain a bit. But I believe that the reason i go through all the pain is so that when my child is born I will be able to help her if she shows signs of having eds too. It's important to stay strong before it gets too bad.

  • deborahdavis | published over 3 years ago | Originally written in English

    Thank you for your testimony John. I too have been on a long road of being dismissed by my doctor. I would make an appointment for a cough that wouldn't go away but bring a list of symptoms and my doctor who I'd seen for many years would tell me he only had time to discus the issue that I made the appointment for. Many times I have gone in about 1 thing and asked him about another like my hernia where an incision scar is from gallbladder surgery is and he didn't even write it in my chart. Many EDS symptoms were brought to his attention over the years, many never were documented in my records, and I was never diagnosed. That is until I was facing having my 4 & 5 ACL knee surgeries at 42. I was in bed watching Extreme Makeover Home Edition: Frisch Family when the mother of this family talked about EDS and it being a connective tissue disease. I never thought to connect my ACL tears to all my other seemingly auto-immune issues and as soon as I looked up EDS, I was like, I got that, I got that too, I can do this, I can do that, etc... I score 9 out of 9 on the Beighton Scale! I went back to that doctor and said, "I've finally figured out what's wrong with me!" After trying to remind him of all the symptoms I've had all these years and asking him, "Do you remember the time I came to you with this or that", it became apparent that to him it was just small talk at the time and never went into my chart! Well he finally believed me and I was on my way to see the rheumatologist. She referred me to a geneticist and a cardiologist. But now I can't go see them or her because my medical ended after my employer terminated me because I was out of work with a torn ACL for 4 weeks! Can they do that? Yes they can but I have an Equal Employment Opportunity Americans with Disabilities Act charge being investigated right now! I am gonna win this for all of us EDSers and other people who have rare disorders, syndromes, and diseases! I'm a creaky, rickety Erin Brokervich staying up late, researching EEOC and ADA and Ehlers-Danlos and getting my ducks all in a row! God Bless you for your story. It hit home and gives me strength. :-)

  • mistipittman | published over 2 years ago | Originally written in English

    Thank you so much for sharing your story about your beautiful wife! My friend suffers from EDS and I suffer from MS. I am always trying to learn more about EDS so that I can try to support her better and be there for her when she's having a rough day. This really helps in so many ways. Your wife was so lucky to have a loving, kind, generous husband as yourself. I will keep your family in my prayers and hope that with your kindness and push for education, more people can benefit from advances in research and knowledge of this "invisible illness". Thank you again for your story and God Bless.

  • Gracie | published over 2 years ago | Originally written in English

    John, I'm so grateful that you wanted to share Carol's story and struggles. I felt like I was reading about my life. I haven't been diagnosed yet, but I have so many of the symptoms. I had a Dr. tell me that he thought I should see a psychiatrist after being rear ended in a car accident and my pain not getting better. I was in shock. Like I want to make up being in pain all the time, from head to toe??? Really?? If I sneeze, my neck and back are disjointed. I can be sound asleep and my ribs, back or neck will disjoint and I wake up from excruciating pain. I feel less alone and can at least get to some acceptance level now from you sharing until I can find the right Dr. I currently regularly see about 9 Dr's no one has picked up on this. I saw my primary care Dr and she had never heard about this but did agree that due to all the symptoms that I should get tested. Thank you again for caring so much for Carol.

  • 1docsayseds1saysnoeds | published over 2 years ago | Originally written in English

    This is such an amazing story and I'm sorry for your loss. Your wife sounds like a sweet angle. I'm searching for answers myself. As my login says one doctor said EDS and his colege says no I don't have EDS. Doctor # 1 is sending me to Cincinnati for genetic testing Dr. Tinkle. I'm thankful for this site and all your helpful info God Bless!

  • ehlersdanlosawareness | published about 1 year ago | Originally written in English

    Thank you for all of your prayers and caring comments.
    We are making progress with our EDS Awareness programs.
    We now have almost 80 EDS Support Groups started in US, Canada, Australia and a new one in Anchorage, Alaska. We completed 2 years of free 2X monthly educational webinars. My daughter Deanna & I will be presenters and sponsors at the August 2015, US EDNF Conference in Baltimore. God Bless, John

  • Krista2075 | published about 1 year ago | Originally written in English

    I am so sorry for your loss. I too discovered I have this lovely syndrome. I have been treated like a attention seeker or hypochondriac for years. My daughter too had it and I'm thankful that my perseverance has finally paid off. I will journal to help her and fight for her. You were a good husband to stand behind your wife's "invisible " illness. Bless you and your daughter.

  • edsawareness | published about 1 year ago | Originally written in English

    Krista2075,

    Thank you for your kind words. My daughter and I will be presenters at the EDNF Conference next month speaking about EDS Support Groups and EDS Awareness activities. This program is dedicated to Carol's memory. God Bless. John

  • Mammabear379 | published about 1 year ago | Originally written in English

    Dear John,
    Your story touched me so much. I felt myself in almost every detail of your story of Carol. I am 36 and I have been in constant pain since I was 12 years old. For the first few years I saw many doctors and had many tests but the results were always negative for everything. My mom's family all have similar issues and I guess they just raised me that this is what we have to deal with so she stopped taking me to the doctor. As an adult I struggled to physically maintain a job because sleep is painful and almost impossible during the night. Once I had my daughter I chose to stay home with her because I just couldn't handle more than the housework. I have been married 12 years and I have slowly depended on my husband more and more. I can't do laundry, if I do dishes I am on pain the entire day/night. My hands are numb, tingling and painful all the night. My car is a mess because I can't carry the items up the stairs into my apartment. The vacuum is too hard to push. I have trouble holding my phone or raising my arms to wash my hair. Even driving the car I always try to slow or stop by taking my foot off the gas because braking is painful. Since I haven't worked and haven't had insurance for the last 20 years I have never been diagnosed. Usually I see doctors for just emergency visits like the many sprained ankles I have gotten over the years and whenever I try to explain the constant pain they just tune me out. This year I have been able to go to a doctor and I am trying to get tested for whatever I can. So far the only major tests that have shown anything are x-rays that show the entire spine is in a stage of advanced degeneration for my age. I am pushing for referrals to a rheumatologist but it's so hard for people who don't know what is going on to understand. I have talked to my mother's and grandmother's doctor to pretty much beg for genetic testing. I am concerned for my daughter too who is ten and complains of knee pain all the time, she has flat feet and is very clumsy and also numbness in her hands alot. Her doctor isn't concerned about it but I don't want her to end up like me. I still don't know what is causing all my pain but I found myself here comforted at 4 in the morning that I am not alone. I am so glad you shared Carol's story and I hope your daughter is doing well. You are both in my thoughts and prayers tonight John. Thank you.

  • ehlersdanlosawareness | published about 1 year ago | Originally written in English

    Thank you for your kind words. My daughter Deanna is stable and doing the best she can with EDS, POTs etc. We had an opportunity to speak and sponsor at the 2015 EDNF conference last month and connected with many EDSers. We have started over 85 local support groups and are hosting free doctor webinars every 1st and 3rd Tuesday. We have over 40 webinars on our site. Check out www.edsawareness.com.

    Kind Regards ... God Bless,

    John

  • viviengianna | published about 1 year ago | Originally written in English

    I understand I did not know I had eds until I was 31. My mother and I are both passages in a car the exact same way. We both hold tight too the handhold above the door.i also get discombobulated. I am often in bed or a chair. I have to decide if something is worth doing or not. I know whatever activity I do I will pay for later in pain. I miss sometimes not knowing I had eds, but I remember the fear of not knowing if I was going to lose my mind..so at least we are all in this together and reinventing the wheel. Thank you John for sharing everything you and your wife and daughter say and did resonates with me. I hope to be able to get to one of the EDS conferences one day. Keep teaching and sharing everyone. I want the world to sit up and take notice.

  • viviengianna | published about 1 year ago | Originally written in English

    Dear john, I too was always a light sleeper and noise wakes me up.but I found out that in EDS central apnea can often be a problem. I was the only 100 lbs female in my "sleep study group" most others were overweight men in their 50's. No one thought I could possibly have a sleep disorder but I do. Central apnea has nothing G to do with weight or gender or diet. I have a retroflex Odontoidbone that pushes on my brain and causes me to fall asleep briefly. I also have central apnea..the brain decides not to give the signal to breathe. If your daughter is having problems with sleep and not awaking refreshed, as her mother may have. She may want to test for that too. I also have problems with my billiary ducts. I am so glad you wrote to help. Hope anything I say is of use. Vivien.

  • edsawareness | published about 1 year ago | Originally written in English

    viviengianna,

    Thanks for your comments. I'll pass on your information on to my daughter.

  • Shasha1013 | published about 1 year ago | Originally written in English

    Hey John, I just read your article for the second time, the first was back in Nov 2015 when I was dx with EDS type 3, however the gentecist is checking me for other types due to cross over symptoms. I wanted to let you know that I forwarded this article to my dad and he took comfort knowing he wasn't alone when going through things with my mom, which matches your wife's story to a tee with a lot of surgery, and surgeries gone wrong. She died unexpectedly in 2007 at 47 with cardiomegaly left ventricular hypotrophy (cardiomyopathy), and she was a just over 100lbs. So it affected her heart valves as well. I was fortunate to finally get the dx after suffering 10 years after switching hospitals/providers. My 10 yr old daughter too was dx last month. There is very little knowledge where I am from in ND, so I will be starting a suppt group ND raising awareness in my area. I too am a nurse, and had to finally apply for disability due to my knees buckling and SI joint/hips popping out and I collapse. It is a struggle to just get up and raise my 3 kids (1 w Autism) that I find I can no longer push myself to work. The disability office thinks I look totally normal, but I definitely am not. I wanted to thank you for your article as it was one of the first ones I read after being dx, and it TOTALLY hit home when you described you kiddos coming home to your wife just getting out of bed, as I greeted my mom the same way, otherwise I'd be bring her a glass of water when she was puking after school. Anyways thank you for sharing.
    Shannon

  • celislonneger | published about 1 year ago | Originally written in English

    Wow, your wife's story sounds so much like mine.

  • edsawareness | published about 1 year ago | Originally written in English

    Thank you for your kind words. My daughter Deanna is stable and doing the best she can with EDS, POTs etc. We will be a sponsor at the 2016 EDNF conference in July and again connect with many EDSers. We have started over 100 local support groups and are hosting free doctor webinars every 1st and 3rd Tuesday. We have over 40 webinars on our site. Check out www.edsawareness.com.

    Kind Regards ... God Bless,

    John

  • celislonneger | published about 1 year ago | Originally written in English

    I was only diagnosed today, after almost 13 yrs of searching for an explanation for the pain. Is there any advice you can give me as far as where to start with pain relief? Feeling overwhelmed

  • Shasha1013 | published about 1 year ago | Originally written in English

    Visit the EDNF website and you will find lots of info. I've found that my heating pad is my best friend, and do lots of yoga, meditation( cheegon), coloring therapy, puzzles. I was taking 5/325 norco prn, and they recently putbme on pain patch called butrans, and I wish I would've done it a long time ago. The more therapy I do, ithe more I hurt, and I need to keep exercising to loseweight. So I agreed to try the patch short term, and intend on taking a medication vacation after losing some weight. Hope this helps. Take care.
    Shannon

  • celislonneger | published about 1 year ago | Originally written in English

    Thank you so much for taking the time to reply. I'll look into all those things. I am so glad that I finally know when I am in so much pain all the time, but there is not much online as guidance on how to gain control of the pain.

  • edsawareness | published about 1 year ago | Originally written in English

    Cellslonneger,

    There is a very good book for pain management and Physical Therapy for EDS.
    http://www.chronicpainpartners.com/free-we...

    Hope this helps.

    God Bless

  • celislonneger | published about 1 year ago | Originally written in English

    Thank you so much

  • Rosserk | published about 1 year ago | Originally written in English

    Hi Join, reading your wife's story is like reading about myself even down to the description of driving over bumps in the road! I have just been diagnosed with Ehlers danlos type 3 within the last two weeks I'm 54. My doctors didn't reach my diagnoses on their own they were directed to it by me after I happened by chance to read an article in a newspaper about a woman here in the UK who had just been diagnosed. Her symptoms mirrored mine and sent me on a search of the net. I gathered all the information I could find that supported every symptom I'd ever had which was connected to EDHT and marched into my doctors office. It was like he suddenly had a lightbulb moment when I showed him the information. I have a Beighton score of 9 and every possible symptom you could name connecting my diagnoses to EDHT and all the evidence resides in my bulging medical file. I'm still fighting to get some help and to see a medical professional who understands the condition here in the UK. My doctor and the specialist so far know less than I do about this rare condition, the effects and the debilitation it causes. I'm going to be printing off your story and giving it to them to read because as I say I could have written in myself right down to the discription of my children carrying things for me! Strangely my husband is also called John and he plays your role discribed above in my story. My daughter and my son are also both starting to show symptoms of having the same disorder. Thank you for taking the time to tell people your wife and daughters story I am sure it will help a lot of desperate people. My warmest regards to you and your family Karen

  • edsawareness | published about 1 year ago | Originally written in English

    Karen,

    Thank you for your kind words.There is an EDS organization in UK that you will want to check out: http://www.ehlers-danlos.org/

    Also we have 50+ educational webinars and 100+ Support Groups on our site. One in Lincoln UK http://www.chronicpainpartners.com/eds-sup...

    Kind Regards,
    John

  • Kilianti | published 10 months ago | Originally written in English

    Hi how can we participate in your live "EDS Educational webinars"

    Then I want to find out from the other people do you just have the pain, flexibility or do you also bruise and tear open?

  • edsawareness | published 10 months ago | Originally written in English

    Kilianti,

    There are > 60 recorded webinars that you can find by EDS presenter's name, location and specialty at: http://www.chronicpainpartners.com/webinars/.

    You can register to attend free webinars 2X per month.

    "Get Webinar Announcements And Our FREE Guide" on our site.

    Many symptoms are described by Dr. Brad Tinkle at: http://www.chronicpainpartners.com/free-we...

    Kind Regards,
    John

  • DawnFae | published 8 months ago | Originally written in English

    Thank you so much for your post!

    Your wife's struggles mirror my own in so many ways.

    My daughter was diagnosed with EDS almost a decade ago, but the doctor's in the area considered it a 'non-illness', gave us zero information, & zero help.

    As both our healths deteriorate, I'm back to looking for answers, solutions, or even just ideas & direction.

    You've given me a cohesive way to explain the symptoms to the rhumatologist I go see next month.

    THANK YOU!!!!

  • oclaire | published 6 months ago | Originally written in English

    Hi John,

    Reading your wifes story litterly brought me to tears, she endured so much but you never gave up on her and it was very inspirational. I am so glad that you have started awarness groups because it is a unheard of disease. I am so sorry for your wifes struggles and your daughters.

    I have a very similar story to your wives. I was diagnosed with EDS type III when I was 14, so a year ago. I have thoracic outlet syndrome and about 6 months ago had major surgery to correct the problem.

    I have fibermaylgia, leg defomities, and the doctors are leading towards a dignosis or MS.

    So many doctors too told me it was in my head, and my family didn't believe me as you believed your wife. They stuck me in a hospital trying to cure me. I know your wife was so greatful for your trust and unwavering support.

    It took them four and a half years, I went to 39 different doctors. I no longer have a good relationship with my family because of it, so I am so sorry you too had to go through that. But you are a good man,for sticking beside her!

    I hope you send your daughter the best wishes from myself, it is so lonely out there now knowing what your future holds and how much longer you will be able to be independent.

  • edsawareness | published 6 months ago | Originally written in English

    Thank you for your kind words, We are making some EDS awareness progress with our support groups and webinars. Hope you find the support and help you need. John info@edsawareness.com

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